as for me and my house

sedona

2012-01-31T12:02:00.000-07:00

my parents have a timeshare in sedona that we have used each year since i was a little girl. i have very fond memories there and i am excited to start traditions like this with gavin. this was his first time up there and he absolutely loved it! we were able to walk around some shops (although we had to stay pretty bundled up because it was so chilly!).

gavin ready for the cold weather

jeramy and i were also able to spend some time together hiking around the various trails in sedona. we had a blast. one day, we went on a hike with my dad to this gorgeous place called devil's bridge. if you look above us, you'll see it. purely magnificent!

the next day, jeramy and i went hiking again-this time just the two of us. it was such a special time. he is my best friend and i just love his company! we always have so much fun together!!

we left sedona on thursday morning and decided to head up to flagstaff for the day so that gavin could see the snow for the first time. the weather could not have been better. clear, sunny skies with just a little chill to the air.

we had such a wonderful time and i am so thankful that jeramy could join us for a couple days. love my life. love my family!

eye surgery follow-up

2012-01-14T10:05:00.000-07:00

we had gavin's 3 month-post op appointnment yesterday. it went so well! he told me that gavin's eyes look "perfect" and that he really "hit the bullseye". he also said that he didn't expect it to only take one surgery. since his eyes look so great 3 months after his surgery, it is pretty safe to say that they will stay straight. down the road, he may need to have another surgery but his doctor told us that if he did need one, he probably wouldn't need it until adulthood. i can live with that :)

jeramy and i have seen a huge improvement from gavin since his eye surgery. he is sitting up, still using his hands to prop himself up on the floor, he is rolling all over the place. his favorite place to play is under the dining room table.

here is a picture of gavin rolling everywhere around chirstmas time.

he has been doing so well. it is very exciting to see him getting more mobile. the more he moves, the more he develops muscle tone. we are so excited about the progress gavin is going to make this year.

our friends, nate and emily are back in the states right now. they are missionaries serving in the czech republic. they were expecting their little boy at the end of the year and they received their little bundle of joy on new years eve. it is so great to see them starting their own little family.

here is a picture of emily, gavin and me at her shower before she had Titus.

...and here is one of gavin at the shower that my friend jenni took as he was trying to grab her phone

love him so much!

quick little update

2012-01-11T12:59:00.004-07:00

hey there! sorry it's been so long since i've posted. we have been so busy these last few months. here is a quick recap of what you might have missed.

last halloween, gavin was too sick to go out and get dressed up. this year, we made sure to go trick or treating with him. we went over to my sister in law's house and walked around with her kiddos while the men sat outside, handed out candy and watched football :) gavin fell asleep by the time we got to the end of the street, but i like to think he enjoyed himself.

my little monkey :)

at the pumpkin patch

gavin also got his first haircut! we took him to a little salon called cool cuts for kids. i spent just under 60 bucks by the time we left there. haircut, first haircut package complete with lock of hair, shampoo and of course baby hair gel. from now on, i will cut it myself :)

gavin and daddy

love my boys!

we spent thanksgiving in northern california with jeramy's family. we had a little family reunion and had such a wonderful time. gavin did so great on the trip. he needed oxygen for the flight but did not need it for the remainder of the trip, with the exception of the last couple days when he spiked a high fever and was sick. here are some pictures from our time in california.

gavin playing the piano with g.g. and asher

gavin with his second cousin, sophia (she loves him so much!)

me and christy in yosemite - sisters!

me, star and christy (so happy i married into this family)

gavin with jeramy's cousins, steve and dan (who, i think, will never have children after vacationing with so many. haha!)

the 3 of us at the giants stadium in san fransisco

we had such a blast! after we got back from california, it was already time for christmas. i hosted christmas eve dinner, christmas day breakfast and christmas dinner. perhaps i took on too much?? but it was all worth it to be able to spend such a wonderful time surrounded by family.

me and jeramy on christmas eve (gavin fell asleep early)

gavin with santa :)

snuggle time with grandpa

after a crazy couple months surrounding the holidays, jeramy and i were able to go out together for new years. his old boss was throwing a "white party". we had a great time with great friends. thank you to my mom and dad who watched g!

all ready to go

what a fun night!

see...i told you it would be quick :) i hope you all had a wonderful thanksgiving and christmas! i look forward to sharing all that God is doing for gavin. it has already been such a wonderful start to the year. (more to come on how well gavin is doing!)

here's to 2012!

tough guy

2011-09-19T15:03:00.000-07:00

gavin's eye surgery was last thursday at phoenix children's hospital. we are very pleased to report back that everything went very smoothly. we arrived at the hospital around 3:30 to check-in. poor gavin wasn't able to eat past 10:00 that morning but he surprisingly did very well with that. his surgery was scheduled for 5:00 in the evening. jeramy and i both felt at peace with the procedure so thank you to each of you who prayed specifically for that.

phoenix children's was great! the anesthesiologist, who has helped with gavin's past procedures, allowed me to go back to the operating room with him. i was able to stay with him until he was asleep. i have to say that although i am glad that i got to stay with him since he was so scared, i also had a much harder time with this surgery than past surgeries. i think it was a combination of this being a more invasive procedure as well as witnessing the process of putting him to sleep. it was a very long hour to wait but thankfully, i had jeramy's shoulder to lean on. in addition to that, my parents also came and waited in the waiting room. it always helps me to have them there. also, two of our friends are child life specialists at pch so they accompanied us back to our room prior to gavin's surgery. i felt much more at ease knowing they were there. they also brought fun toys for gavin to play with while we waited.

once the doctor came to get us after the surgery was over, we started making our way back to the recovery area where gavin was. i heard him before i even walked through the doors. i'm not going to lie, i didn't listen to a word the doctor said at that point-again where jeramy comes in as such a support. i scooped up gavin as he cried the saddest tears. children coming out of anesthesia is not a pretty sight. he was keeping his eyes closed in a tight squint as little blood-tinged tears rolled down his cheeks.

i was nervous being at a hospital that i was unfamiliar with because all of his procedures have been at scottsdale shea. a dear friend prayed specifically for that and i was amazed at how God totally provided in a way that i know had nothing to do with coincidence. as i was holding gavin, his nurse came over and i was stunned to see a man who had been gavin's nurse twice in the picu at scottsdale shea. instantly i felt relieved as i knew that he remembered exactly who gavin was and who we were as well. it turns out that he just transferred to phoenix children's. gosh, i love how the Lord works and i love how He answers prayer.

we were able to go home later that evening and i was amazed at how well gavin was feeling the next morning. he did need to go back on oxygen for the first night do to the fact that the pain meds had really knocked him out. when that happens, he becomes a "lazy" breather, which is to be expected. he only needed the oxygen that night and then was back to his old self. the day after his surgery was filled with high highs and low lows. you could tell that he wanted to play but that he was also still in a great deal of pain.

his eyes look pretty good today. they are a little bloody still but we were told to expect that. i actually think that he is seeing things more clearly. our physical therapist told me this morning that he looked more engaged so that's wonderful. he is also really taking a big interest in our dog, fitch. when i ask him where the doggy is, he finds him and gives him the biggest smiles. he seems a lot more engaged with me and jeramy as well, locking eyes with us and keeping his focus. yippee!!

we give him antibiotic ointment 4 times a day to help lower the risk of infection and we see his eye doctor this thursday for a follow-up. although his eyes look much straighter, we will not be able to tell if the surgery was 100% succcessful for quite sometime. there are really three options moving forward. one, the surgery could be a complete success with no need for glasses or additional surguries (obviously that is the scenario we are praying for). two, the surgery could be successful enough that he will still need glasses to correct any additional crossing without any future surgeries. or three, that both the surgery and glasses are not fixing the problem and that he requires additional surgeries. i am cautiously optimistic that this surgery will be our last.

thank you for praying specifically for a good outcome. i will let you know what the doctor thinks on thursday.

progress!

2011-09-07T21:12:00.000-07:00

gavin has been doing so well lately. he has been making strides in so many different areas. he has been eating so well lately and his reflux has been pretty minimal-only about once a day, if at all. he has occasionally been taking some baby food too. we are so pleased with this part because, as any mother knows, feedings are the most frequent thing we do for our children. when feedings are tough, it really can alter the entire perception of how your day went. needless to say, gavin has been eating quickly and efficiently. we thank God for that blessing.

he has also been sleeping so well! he has been going to bed around 6:45 and has been waking up between 7:30 and 8:00 in the morning. in addition to that, he has also been napping for 2 hours in the afternoon. he recently went to one nap a day, which i love! here is a picture of him after he fell asleep in the car on our way home from church. isn't it the worst when they fall asleep 5 minutes away from the house when it's close to their naptime?? oh well....still so cute!!

gavin has also been making a lot of strides in therapy. he has been working on bearing weight on his legs and sitting independently. he is so close! he was invited to another 3 day NDT clinic (with his occupational therapist). i love how much they have taken a vested interest in him. i am so thankful for each of those women.

just a reminder that tomorrow is gavin's appointment with his opthomologist. please keep us in your prayers as we will most likely schedule surgery for his eyes. our appointment is at 8:20. we will update as soon as we know anything concrete. thank you everyone!

looking back, looking forward

2011-09-01T21:53:00.030-07:00

tonight, i looked back at all of our posts in 2010. i began in march when we first found out about everything going on with gavin. i have not yet caught up to present posts. to be honest, i am too emotional tonight to read any further. it's weird how i have forgotten some of the specific, terrifying ordeals, yet i can instantly go back to that day as soon as i read it. actually, it seems like i have done that a lot today.

this afternoon i brought his baby swing downstairs because his occupational therapist wanted to see if he still fit in it. i placed gavin in it and turned it on. as soon as the music started playing, i became shaky and anxious. i remember each of those songs. i remember them playing the first months that we had gavin home. i remember how sick he was and how tired he looked swinging in it daily. i was also instantly taken back to how my house looked when gavin was first home. it looked like a hospital. jeramy and i took turns sleeping on the couch downstairs as we took 4 hour shifts at night while the other one slept. there were machines, monitors, cords, tubes, feeding pumps, and numerous alarms. i stood there stunned at how fast all of those memories came back from a song and, as you can imagine, i turned the music off rather quickly.

then, this evening, i was holding gavin after he finished his bottle. ironically, i was holding him while i was wearing the same exact tank top i wore when i held him for the very first time. the nurses would place him right in my shirt. and now, i cry thinking about how big he has become...much too big to fit in there now.

i'm glad i looked back at those blog posts and i'm thankful for the tears i shed after hearing those songs on his old swing. gosh, i have been crying throughout writing this entire blog post. in some ways, it is hard to look back and become so emotional, but in other ways, it's really good for perspective. gavin has come so far and i am beyond thankful for what God has done in his life and in ours. i am also extra thankful for each of you tonight. you stood by us and continue to stand by us as we go through this journey.

i am feeling convicted tonight. i am impatient. i sometimes doubt God's faithfulness and His goodness. i, too often, ask Him where He has gone and why He has forgotten about my family. but looking forward, i will remind myself that God is who He says He is. He is faithful and He is good. i need to be patient. the verse that is on the green bands that we had made for gavin is jeremiah 29:11 "for I know the plans I have for you declares the Lord. plans to prosper you and not to harm you. plans to give you a hope and a future". i need that reminder tonight because so often, i recite that verse without fully taking in its truth. Father, thank you for the reality check today.

fingers crossed

2011-08-30T16:16:00.001-07:00

gavin is almost 17 months old. i can hardly believe it! he is turning into such a little boy. he is making so many noises these days and is doing many new things recently. he claps when you ask him to, he can grab your nose when you say, "where's my nose?", he raises his arms when you say, "arms up", and he is starting to identify your mouth when you ask him, "where's my mouth?". i love this stage. i love watching him learn something new every day. here is a picture of him with a group of therapists at a occupational therapy clinic i took him to:

some other news, gavin got his glasses. he wears them all day long and actually doesn't seem to mind them all that much. he doesn't really pull at them or seem to be bothered by them. this poor kid always has something on his face that i am guessing he is getting pretty used to it. he will continue to wear the glasses until we see his eye doctor on september 8th to schedule surgery. i will keep you posted on that appointment. i really do love this kid-such a trooper in these glasses. they are so cute and i think they make him look quite studious.

another big milestone for us is that gavin has been off oxygen COMPLETELY for 6 days!! prior to this, he was still needing the oxygen at night while he was sleeping, but his sats have been so good all night that he doesn't need it. i think he knew he was done with oxygen before we did because he started pulling it off his face within a couple hours of falling asleep for the past week and a half. like i said, he's feisty. i imagine that gavin will remain off oxygen unless he comes down with a sickness of any kind that impacts his respiratory system. please join jeramy and me as we pray against that. love you all!

flathead lake

2011-08-29T12:09:00.000-07:00

we had the privilege of taking a vacation to montana. some great friends of ours own some property right on flathead lake. it is gorgeous there! we flew for the first time with gavin, who does not travel lightly. we had to order a portable concentrator, take his pulse oximeter to see how his oxygen levels were on the plane, we had a carry-on full of various medical supplies and medicines, a diaper bag and oh yeah, a baby! despite the overwhelming amount of items to take with us, gavin did excellent! he played the whole way there - even after a 4 hour flight delay. he didn't take a nap until 4:45 that afternoon. you would think that would make for a cranky baby, but he was a gem! we definitely knew that the Lord's hand was on us during that flight.

our first complete day there was very eventful. we woke up and jeramy and me decided to take the jet ski out. once we had our fun, jeramy began bringing the jet ski back to our dock. there are poles with rope that hang off the dock for you to lasso the jet ski so that you don't have to dock it completely. you wrap the rope around it and a metal piece comes down to tighten it right around the steering column. the mistake was taht we left the jet ski in idle while trying to bring it in. as jeramy was wrapping the rope around the column, it tightened down on the throttle. jeramy reached down to quickly take it off but before we knew it, the rope tightened around the throttle and jeramy's finger and took off. it broke jeramy's finger completely.

we drove straight to the hospital where he had xrays and various pain meds. they told us the break required surgery. they took him into surgery about 3 hours later to place a plate and 4 screws in his hand. the surgery took about an hour and a half. jeramy was such a trooper! i felt so bad for him since the majority of our vacation centered around lake activities. he also had plans to play golf with a friend of his, which obviously didn't happen. here is a post-surgery xray of the plate and screws:

the remainder of the trip went pretty smoothly. i got stung by a bee our second day there and i got a black eye the last day of our vacation after swimming down to retrieve a golf ball from the bottom of the lake-only to hit my face on some rebar that was in the water surrounding a pipe. with jeramy's busted hand and my black eye, we looked like a poster for domestic violence. ha ha!

gavin did the best out of everyone! he was such a social little boy and even ate some baby food while we were there. hopefully next year, our trip to flathead lake will be more uneventful.

thanks for lifting us up in prayer!

what is BPD?

2011-07-27T14:14:00.006-07:00

i get a lot of questions about gavin's diagnosis in regards to his lung disease. i thought i would clear up any misconceptions or, if you are new to the blog, give you a quick overview of what gavin has and what that means for him in the long run.

when gavin was born, he was diagnosed with bronchopulmonary dyslpasia, or BPD. here is a little overview of what that means exaclty.

what is BPD?

in BPD, the airways and lung tissue are damaged, and cause a breathing problem that lasts a long time (chronic). many babies who are premature or are born with medical problems need to be treated with breathing machines (mechanical ventilation) or oxygen to stay alive (gavin was on mechanical ventilation for about 2 months). these necessary breathing machines and the strong mixtures of oxygen cause some damage. BPD is seen most often in babies who have had these treatments. most babies with BPD need extra oxygen and medicine at home. the good news is, as babies grow they can get new lung tissue. it takes a long time for a baby with BPD to get better, but most do well over time. the lung parts that are damaged in BPD are the parts that take in oxygen and put out carbon dioxide, or do the gas exchange. these are bronchi and alveoli. gavin needs extra oxygen to make sure enough oxygen gets into his body. damaged airways in the lungs don’t always behave normally. they tend to be twitchy and react to things. at times, airways may be too narrow to let air through easily. these reactive airways may go into bronchospasm. when this happens, babies with BPD may have trouble breathing and wheeze, and his or her chest may suck in with breaths (retractions). when this happens, babies need to get rid of carbon dioxide and get more oxygen.

What kinds of problems do babies with BPD have?

there are several problems babies with BPD tend to get. babies with BPD may have some or all of these problems.

• many respiratory infections: in the first year of life about half the babies with BPD will be back in the hospital with a respiratory infection. their damaged lungs catch germs easily (this has happened for gavin many times).

• slow growth: babies with BPD may have trouble gaining weight because they use large amounts of energy just to breathe. this is why special additions need to be added to his bottles in order for him to get the extra calories that he needs.

• trouble with feeding: some babies with BPD have trouble with reflux and throw up quite a bit (umm....definitely pertains to gavin).

• congestive heart failure: lung problems can make the heart work harder. medicine, fluid balance and diet can prevent or control congestive heart failure (gavin sees a cardiologist now to closely monitor this).

• trouble with electrolytes: too much fluid in the lungs can make it harder for babies with BPD to breathe. medicine that helps babies get rid of extra fluid is called a diuretic. this fluid also contains electrolytes. electrolytes are salts that flow in and around body cells. the fluid and electrolytes have to be kept in balance. babies may need to get extra electrolytes added to formula or have the dose of their diuretic changed often. babies with BPD need regular blood tests so the doctor can watch the electrolyte balance (gavin received several doses of a diuretic while in the nicu but none since we have been home). yay!!!

• developmental delay: some parents say their babies with BPD took longer to sit up or walk than other children. this happens because they spent their first few weeks or months ill in the hospital. this is why gavin receives all of the therapy that he does.

i hope that helps everyone understand exactly what gavin goes through each day. he works so hard just to breathe and everything is second to that.

if you wish to read the entire article, click here and please don't hesitate to ask me questions if you have any.

cardiologist update

2011-07-27T13:37:00.001-07:00

today i took gavin to see a cardiologist. since his pulmonologist was concerned about his lung disease causing stress to his heart, he referred him. i actually went with my friend's mom. her son sees the same cardiologist. it was so great to have her support and her background knowledge.

everything came back completely normal today! praise Jesus! the cardiologist did an EKG and checked his blood pressure as well. he said that his EKG looked completely normal and that his blood pressure and heart sounds were great. he scheduled an echocardiagram (an ultrasound of his heart) for gavin just to double check that everything looks up to par with his valves, arteries, etc. he anticipates that everything will come back completely normal with that test as well. i scheduled that appointment for august 11. i will make sure to keep you posted with the results.

thank you again for praying. getting good news today was exactly what we needed. we give every bit of praise to the Lord for that. He has His loving hands on gavin. we trust that.

let there be sight

2011-07-22T17:02:00.001-07:00

yesterday, we had an appointment with gavin's opthamologist. we have known for awhile that gavin's eyes cross occasionally-specifically, the left one. this time they got gavin a prescription for glasses. his glasses should arrive in about a week or so. the doctor told us that the glasses are really a last ditch effort to help with the crossing but that he fully expects gavin to need eye surgery.

with that, we scheduled an appointment for september 8th. we will go in that morning and if gavin's eyes are still crossing, we will schedule surgery. yes...another surgery. the surgery is not a typical lasic procedure that we are used to. rather, it is a cutting surgery. he will cut the muscle in both of gavin's eyes to loosen them until they are center. when we asked why they do both eyes if it is only his left that is crossing, the doctor said that it is like going to get your wheels aligned. you just get them aligned, not just make an adjustment to one of them. that makes sense i guess.

sometimes it takes more than one surgery to get the eyes straight. let's pray specifically that it just takes one. we are hopeful that this will help gavin with a variety of things. parents of other children have reported changes in their child's gross motor development-that they are able to sit better, walk straighter, etc. we hope and pray for that.

jeramy and i are happy that gavin will be able to see better. i am just bummed that it is going to take one or more surgeries. obviously, as his mom, i don't like it. i don't like the stress of the surgery, the anxiety over the anesthesia, and the pain he has to go through. it saddens me beyond what i can even express and i feel like it has just been one thing after another for him. that is what makes me sad....he needs a break. we need a break.

we will keep you all posted on this surgery as it approaches. you are all such supports for our family and we greatly appreciate all of your prayers for gavin. he's quite special.

blessings,

down but not out

2011-07-19T17:45:00.002-07:00

this post may be a downer. sorry for that. but the reality is that i'm feeling pretty down...

this morning i took gavin to gilbert to see his pulmonologist. he is the one that did the bronchoscopy portion of gavin's procedure last monday. i fully expected to walk in there and just discuss the future plans for getting him off steroids. i was a bit surprised with the amount of information i was given when i got there.

first, he told me that gavin is not aspirating anymore! praise JESUS. what an answer to prayer!! that was about the only good news i got though.

from there, he said that the results show that there is still significant inflammation in his lungs. no real surprise there....we kind of figured that. however, the inflammation is causing the blood vessels in his lungs to also be inflamed and because of that, it is causing minor bleeding in his lungs. i don't really know how to wrap my brain around that. there really isn't anything to be done at this point in regards to the bleeding, with the exception of continuing steroids to decrease inflammation. it is such a catch 22 because although the steroids decrease inflammation, they also compromise his immune system. that's not good. and that led the doctor to his next point...

gavin has an infection in his lungs. it is the same strain as a sinus infection/bronchitis type of an infection. gavin was given a 10-day antibiotic to treat that. i'm pretty good at knowing when this little boy is sick, but i had no idea. with the exception of a little cough, he was fine. no temp, no stuffy nose, no increased work of breathing, nothing. i figured that because of this crazy weather and the countless "haboobs" (sorry, i couldn't resist), everybody in phoenix has a scratchy throat/cough of some sort. i guess i was wrong.

i want gavin off steroids so badly. it is such a tough thing to balance. i know he needs them to help with the inflammation, but he has been on them since he was 12 days old and they also have significant side effects, some of which can be long term. those are the ones that scare me the most.

if you thought that would be all of the news i would receive, you would be mistaken. gavin's pulmonologist then referred us to a pediatric cardiologist. gavin has never seen a cardiologist. i was hoping a cardiologist would be the one specialist we wouldn't have to see. so much for that. due to the severity of gavin's lung disease and how hard he has to work to breathe, it could be causing a strain on his heart. i am not about to stress out too much about this appointment until i am given a reason to do so. no need for the extra anxiety right now. however, let's all pray that everything is just fine with his heart.

then came the real kick to the stomach. his doctor told me that he expects gavin to be on oxygen through the winter. umm, that is 5 months away!! gavin is off oxygen during the day so i guess i figured that he was closer to coming off oxygen than his doctor seems to think. he said he may come off for a bit this fall but will most likely need it whenever he gets sick during the winter months or just in general. i'm in the market for a second opinion on that one.

so, needless to say, the appointment didn't go quite as i planned. it seems like that has been the theme though....i think God is trying to teach me a little bit about my expectations and His plan for gavin. i sure wish i was more teachable.

my sister once told me about a book called, "just enough light for the step i'm on". i feel like that. i feel like God gives me just enough for each day and not an ounce more. have you ever felt like that? don't get me wrong, i am thankful for those hopeful moments, even if they are brief. i just wish that we had a little more breathing room and time to catch our breaths before the next hit. it doesn't look like they'll stop coming anytime soon.

again, sorry to be a downer, but i'm down. here's to tomorrow...

i need a maid

2011-07-16T15:23:00.003-07:00

remember when saturday was the day that everyone got all of their chores done? i do. so, today i cleaned. then i realized that i don't just clean on saturday. i clean every day. so i thought to myself, have i always needed to clean this much? nothing really changed in our lives-except having a baby....and how dirty can a baby be? it turns out, they can be dirty. very dirty.

the day after gavin's first birthday, i came downstairs and realized that gavin got a lot of toys. maybe it was just the excitement of the day of his actual party that i failed to notice the plethora of new toys. if you're a mom, i'm sure you can relate to this feeling. i literally said to myself, "how does one baby need SO many toys?!" i still find myself asking that question almost daily.

since his birthday, we have added to the collection, thanks mostly to grandma. as i clean up everyday, i am simply stunned at how his toys somehow end up in every room of the house. how is this? there are toys in the kitchen, the dining room, the living room, our bedroom and yes, even the bathroom. i'm sure the answer is obvious to you if you have children; however, gavin isn't even mobile yet. :) am i the one carryng his toys to various rooms? how do they end up in rooms that gavin didn't even go into that day? i'm at a loss.

i am learning that as a mom, my job never ends. there's always a load of laundry to be done each day, toys to pick up, dishes to clean, and things to put away. so, i'd like to give a shout out to the mothers out there who have more than one child. i seriously applaud each of you....and i totally understand why moms need housecleaners!

how do you keep your house clean and clutter free?

under construction

2011-07-15T16:04:00.000-07:00

please excuse the mess.....the blog is getting a whole new look!!

thanks!

where do i start?

2011-07-14T09:28:00.019-07:00

a lot has happened since our last post. sorry for that. gavin is changing so much. it really is true what they say, "they grow up so fast". gavin is sitting (prop sitting) for 5 minutes at a time. that means that he is using is arms to help support him. he places them on toys or on the floor. he is doing this all by himself. yay!!

gavin is also talking a ton! he makes the funniest noises and squeals i have ever heard. he prefers to do this at home...he's quite shy in public. but i love that about him. he is so cautious....observes everything! it's almost as if, as soon as we get in the car or we get home, he starts telling us about all of the things he saw.

he also has a mouth full of teeth! he currently has 10, if you can believe that, with 2 more sprouting through any day now. it is so funny to me that he has all these teeth, yet doesn't use them. he is still taking a bottle-goat's milk. we have found that the goat's milk really helps his reflux. since we started him on goat's milk, we have been able to take him off ALL reflux meds! praise Jesus! he is going to feeding therapy once a week to work on eating solids/baby food. gavin has textbook oral aversion. i don't blame him at all. with the numerous times he has thrown up and the countless times we shoved tubes up his nose and into his stomach, i can see why he's hesitant.

our weeks are pretty routine. we go to church on sunday and then have lunch as a family so that jeramy and i can talk about the upcoming week. i love sundays. on monday morning, gavin has 2 therapies. first he has physical therapy and then his developmental specialist comes to work with him. on tuesday, he has feeding therapy. this is our only therapy that does not take place at home. we go to the hospital for it. on wednesday, i have Bible study and jeramy's folks get to watch gavin for a few hours. we also try to go up to the anthem outlets where they have a thing called 'kids play'. it is a half hour program for children under Kindergarten age who go to sing, listen to stories and act out plays. we go with my friend Chrystle and her 2 boys. it's a lot of fun. on thursday, he has occupational therapy, and on friday, my mom comes over to spend time with us. i try to schedule his/my appointments on wednesdays or fridays. gosh, i love that we are so busy. it actually feels so nice to be back to the daily routines that i missed so much. our life is more predictable now than it's ever been. we waited a long time for that.

gavin had an endoscopy/bronchoscopy procedure done on monday. it was a huge success. we checked in at 6am with his procedure starting at 7. no joke, we were discharged by 8:30! gavin did so well coming off anesthesia, which as you know, is the hardest thing for him. i was able to be with him when he was first waking up and let me tell you....he did NOT want to be there. he was thrashing around like crazy and then reached down and pulled his iv out of his hand. he's quite feisty....i have no idea where he gets that from. ;) the doctors took a few biopsies. we won't get the results back until early next week. i will keep you posted.

thank you so much for your continued prayers and support for my family. also, special thanks to all of the people who participated in the day of fasting and prayer that we organized last sunday. i am confident that God heard all of these prayers and that gavin's surgery was so successful because of it. there really is no other explanation for it

we love each of you.

i'm not that strong

2011-05-10T19:02:00.000-07:00

i read a blog post from the mother of a little boy who just passed away a few days ago from neuroblastoma. this is a very rare form of cancer. as i read her account of the final hours and of the bravery that the whole family displayed, i found myself in tears in my office. i'm talking serious, hurting tears. it doesn't seem to really matter what the circumstances are that lead up to the pain and heartache this woman and her family were enduring - or any other family for that matter - it is the fact that they were in severe agony and pain over the hurting of their child.
gavin has left an indelible mark on our family's heart. his remarkable story of survival and the pain he has endured to get here is really beyond measure as far as words are concerned. i love my little boy more than anything. my dear tracee loves our little boy more than anything. i'm pretty sure i'm not that strong. there is something about the innocence of a baby or a child that breaks your heart for their life in ways i never thought about. life is so convenient, until it's not.
tracee and i were up on stage on sunday for mother's day being interviewed by the pastor at bethany bible church. the message was on the courage and faith it takes to be a good mom. my wife exudes this beautifully. one of the questions that he asked us was "did you ever expect something like this to happen to you?" answer: no. how could we really? 2 very healthy athletes get married and decide to start a storybook life together with an all natural pregnancy and a beautiful full term baby as the result. we never once thought about a premature birth. who did i know who's had a preemie? no one. we can't say that now, as our lives are filled with preemie babies and their beautiful parents who love and care for them.
our life together was picked up and turned on its head and we've been forced to pick up the pieces very slowly. i'm not very patient. but then i stop and realize that i've been in this storm for well over a year now and wonder how to actually measure my patience.
i pray the same things over and over again. i sound like a broken record and i feel like one sometimes as i keep pleading for the same things over and over again from God. please strengthen his little body...please heal his lungs...please help him with his reflux and his feeds...please heal his eyes...
i have heard that the definition of insanity is doing the same thing over and over again yet expecting different results. am i insane? i do that. i do the same thing (pray) over and over again and expect a different result than the one i've gotten every single time. i won't stop praying though.
anyways, i'm not that strong. it was way too scary to even read the blog post about her losing a son let alone actually losing a son. if anything, through this journey, my heart and emotions have become aligned with the hurting, the less fortunate, the long suffering and the oppressed.
i like that my eyes have been opened to the hard knocks that this life can bring, primarily because it causes me to long for better days - a day when the Lord returns and a day when there is no more pain and suffering - when we get to see Jesus face to face.

jeramy

tough week

2011-04-27T16:08:00.000-07:00

sunday fun day? unfortunately, not this Easter sunday. gavin began to get sick on saturday night. tracee and i listened to him moan and groan all night off and on. it's a horrible feeling as a parent when they are too little to talk and also too little to really give many medicines to. in times like that you just have to grind it out. well, we were all up at the crack of dawn on Easter sunday - praising the Lord for conquering the grave (amen) and also praying for a quick healing of whatever was bothering gavin. it became evident that gavin was having a run in with a stomach virus as he threw up his entire bottle just before heading to church. thankfully, he did great during the church service at bethany bible church. it was awesome to finally get to church as a family and to be able to do it on Easter. kent delhousaye preached a wonderful service on the fulfillment of all of the prophecies given about Jesus and how it is not scientifically possible to duplicate what He did. moreover, the fact that Christianity provides a way to God through faith in His son Jesus - there is no working your way to salvation. it is by grace that we were saved, not of our own doing but of God's. it is a gift.
for all of the mistakes i make i'm sure glad to know that i'm saved from my sins through my faith and not by a list of works i have to attain.
we made it through church and had tracee's family join us for brunch. that didn't go so well. gavin was miserable the whole afternoon and just couldn't get comfortable. everything we fed him was coming right back up. we were set to go to my sister's house to meet up with my side of the family for a late aternoon meal but we had to cancel. :-(
by monday afternoon tracee and i were both sick. i headed home early from work with horrible stomach cramps and tracee was feeling the same way. i had my folks come over to keep an eye on gavin for a few hours just so tracee and i could lay still! we were both throwing up at this point and things were getting rough. we prayed that gavin would sleep through the night and thankfully he did. tracee and i on the other hand did not. i spent most of the night around the toilet praying for mercy. i called my dr. and had them call a prescription in for me which really helped calm things down for us. g was still having a hard time fighting through this bug so we were concerned about his dehydration.we kept pumping pedialyte through his g tube as much as he would tolerate. the nurse told us "if he doesn't pee by 1pm bring him in." we knew what that would mean. they had already told us that there wasn't much they could do for him with a stomach virus other than refer us on to the hospital to get IV fluids if he was dehydrated. you all know how we feel about the hospital and that's the last place we wanted to take gavin. we decided to give him a bath to help him feel better and hopefully lay down to take a nap. it was almost 1pm. i stripped off his diaper and sure enough it was wet! (it really is the little miracles in our life that we cling to these days)
late yesterday afternoon he began to take bottles again - 1oz at a time and he was slamming them down and i'm not even exagerating. he was hungry! the food stayed down so we were able to get him several bottles before bed. today he has been on a 3oz bottle schedule and keeping them down so that is great news. both tracee and i are sore and recovering from this nasty virus. stomach flu is the worst.
i weighed gavin this morning and he has lost about 1/2 pound due to this illness. we have had to go up on his oxygen from 1/8 liter to 1/2. that's not the direction we want to go but understand that when he gets sick and his body gets stressed that those things will happen.
the next 3 months are going to be really critical for gavin's development. all of his therapies and support physicians are really wanting to see him make a lot of improvements. we do too. a lot of the things gavin is doing are at the age of a 5 - 6 month old. it makes sense to us. he was born 4 months early and then spent his first 2 months of life heavily sedated and not really in a position to do anything but lay there. that is 6 months of time that he didn't have to be growing and developing like a full term baby would coming into this world. we ask that you continue to pray for complete healing in every area of gavin's life. also, please pray for us as we battle this out everyday too. it is hard and it takes its toll. we have a hard time sometimes seeing what God is doing. i'll keep saying it but we are ready for a break. we want some rest and relaxation and we want gavin to be able to start experiencing life off of his back and sitting up and enjoying his toys from a new perspective.
we love you all - thanks for your support!

jeramy

gavin turned 1! april is busy...

2011-04-17T11:20:00.002-07:00

first and foremost, i want to thank each and every one of you who participated in gavin's birthday in one form or another! it was a beautiful celebration. the sun was shining last sunday afternoon and the air was cool and crisp. we woke up to not a cloud in the sky after a very cold and dreary saturday - it only got up to the high 40's i think with quite a bit of rain! once again, God is so good to us and blessed us with a beautiful day to celebrate. the theme of his party was "carnival" so we did EVERYTHING we could to make it a carnival! i'm so thankful for such a creative and talented wife. tracee was very busy for weeks in preparation of gavin's party. well...everything came together beautifully! we had a hotdog cart to serve hotdogs to our guests as well as a popcorn machine, beautiful cake pops that tracee made, and a number of magnificent sugary treats for all the kiddos to nibble on! tracee had little paddle balls for the kids to color and take home and call their own as well as a sack race that the kids could partake in. all in all, it was beautiful and perfect! around 3:30 or so we got to doing gavin's smash cake. he definitely wasn't sure about that but both tracee and i helped him as he tried to figure out what to do. we first tried him in his high chair but he just wasn't having it. he still has a lot of difficulty sitting up in that thing and with everyone gathered around and singing to him and laughing, etc. it scared him. :-)

we moved him to the grass and helped him "dig in" to his cake. that was a lot of fun for us and i'm sure for him too!

as gavin's party wrapped up, tracee sent each of the kids home with their own little parting gift. there was a message from gavin attached to each of them that said something like "thanks so much for coming to my party..." i don't know for sure because, truth be told, i can be horrible with paying attention to little details like that! (my bad.)
after we completed most of the cleanup, the family sat around and began to unwrap and break out all of gavin's toys and goodies he received. oh my gosh! gavin is truly loved and supported - our play room here at the house (our living room converted) looks like a mini toys r us - we are so excited for all of those toys and to watch is development improve as he gets a chance to play with them. thank you to everyone! it was really great to have my grandma von in town from northern california to be here for his birthday. it was also especially fun to have tracee's nanny and her aunt kelly and kids with us. for her aunt kelly and her kids, it was their first time meeting gavin. as a matter of fact, for a lot of people it was their first time meeting gavin. he has been so critical and so under wraps for so long that his birthday celebration was finally the opportunity to really expose him to all of our friends and family. FINALLY!! we are so excited to be able to begin to do more normal things again and visit with friends and their kids, etc. RSV is such a scary respiratory virus that is so prevalent during the winter months and with gavin's lung disease, it could have been fatal for him to contract it. obviously, it made us live like a recluse family but we are over that now!
along those lines of "getting out" and living amongst society again - i have to say that it's been hard for us. here is where the vulnerable and candid part of the post comes in. tracee and i have had a difficult time when we begin to see where other babies are at. naturally, we are at that age where most of our friends are starting families too and so we are now beginning to see these babies interact and the level of their development. i know that for us it creates a lot of different thoughts and emotions. i think the strongest emotion for both of us is fear. we fear what gavin's long term outlook will be and it becomes so difficult to stay in the moment and focus on the here and now. as a parent you want the absolute best for your baby. tracee and i would and will do anything and everything possible to give gavin the best we can - to give him the best opportunities to succeed and develop. but, in this journey of ours, there are so many things that are out of our control that aren't up to us. i don't know if i have ever wanted something so bad as to have gavin gain the core strength he needs to sit and play and begin to crawl, etc. i just know that he would begin to experience life in a different way and it would really propel him to a new level of development because he would be seeing everything differently. but, as i said, it's not up to us. we do his physical therapy every week and tracee works with him a ton - he sees his developmental specialist and everyone pitches in to help gavin along.
where are you in this process God? even Jesus in his final and darkest hour asked "my God, my God, why have you forsaken me?" have you ever felt that way? i certainly know that if Jesus had that kind of thought and expressed that kind of emotion that it's a-okay for us to do the same. we serve a big God who can handle that and clearly has us in His hand and has a plan for us.
nonetheless, things are hard. life continues to drag us through some difficult things. i have found that most people can endure things when they have a time table on how long it will be for. with us, it has been and continues to be open-ended. that is really hard, i'm not gonna lie. i pray with such fervency for God to heal gavin on the spot! my heart is broken for the Lord to intercede and for complete healing to take place for gavin. i've never wanted something more. i've cried so many times out of my heart's desire for gavin to experience life the way all of these other kids around him are. tracee and i are just a couple of people trying to be faithful and striving to follow the Lord in all of this.
i'm a desperate man. i am. i've heard that the definition of insanity is doing the same thing over and over again yet expecting different results. i guess i'm insane. i keep praying over and over again - trying the same things with gavin over and over again - and expecting different results! i don't want lose that perseverence.
the truth is that we are stuck. we are stuck in a really hard place in life. we have been seeing a wonderful counselor who has been helping us to navigate through some of this stuff and that has been our saving grace in so many moments. in a session the other day it was mentioned "i bet if we scanned your brains right now we would see a lot of post traumatic stress disorder going on." no doubt that is happening to us. throw that in with a tough economy and uncertainties in that area of our life and it leaves us stuck. we feel hopeless at times. that feeling sucks. i'm not sure what to even ask for right now. so many of you have been so faithful to us - it has helped so much. there's not much pride in this season of our lives to keep us from asking for help and direction and prayers and support on all levels.
if God leads you in a particular situation with our family - I ask that you listen to that leading and share it with us. See...for us, it's through those things that help us see God at work and experience Him beside us in this. it's why i cry when i read the responses on the blog or when we get cards or messages of encouragement, etc. it feels good to know that we aren't alone.

jeramy

a year in review

2011-03-28T14:57:00.000-07:00

on a monday 1 year ago tracee was admitted to the hospital indefinitely as we hoped and prayed that we could keep our baby boy gavin inside as long as humanly possible. tracee's ongoing diagnosis of her pregnancy problems at the perinatologist office located across the street from the hospital finally came to an urgent conclusion: you and your baby are at risk. we need to get you under constant medical supervision.
i think that both tracee and i thought we would be there a while but certainly not with the birth of our son right on our heels. i mean, she was only 26 weeks along - or so we thought. the whole preeclampsia thing was certainly a frustration and a nuisance as it was keeping tracee completely bed ridden. as we consulted with various doctors, it became more apparent that gavin was going to come sooner rather than later. tracee's body wasn't responding well to this pregnancy. i remember the saturday night before she gave birth (April 3rd) with her blood pressure at 220/110 and sicker than a dog on magnesium sulfate - that was rough. it looked like that might be the night to bring gavin into this world. we prayed hard that it wouldn't be as tracee's OB was out of town for Easter and wouldn't be back until monday. we didn't want to do this without her there! thank God, things settled down and we celebrated Easter in her hospital room with family visits and more meds to control the preeclampsia.
monday rolled around and it was pretty apparent to one of the perinatologists that it was time to get that baby out of there. tracee was battling. she was fighting hard for our unborn son to get as much time in the womb as utterly possible. the call came in from her OB that we would be having a baby later that day. he was set for delivery some time around 7 i think. i could see tracee's condition worsening. i knew the timing of this was essential. several hours before delivery, tracee sat me on the bed and said to me "my body is shutting down." now, if you know my wife that means something. she is a fighter and is one of the toughest people i know. she sensed her life was on the line and i remember feeling the severity of the situation: i could lose both my wife and child.
well....here we are just about a year later. 51 monday's ago gavin was born. it's true what they say - you don't know what you don't know. tracee and i have come to know a lot more than we had hoped or imagined we would. certainly none of it by choice, this wasn't our plan, it was God's. we had a much different plan in mind. we expected to deliver a baby about the same time as my sister did and that those two little boys would grow up within weeks of each other, sharing in every developmental monument along the way, together. but, as you have all witnessed and we have lived, we continue to plug along in our journey of giving birth to, and now raising a micro-preemie.
i have fears. i know tracee has fears. the one thing i have found true in this whole experience has been that there is always a new challenge to encounter and always something new to endure. as the parent of a micro-preemie, i've clung to the success stories and the development paths of others who have endured this same journey. the thing is that gavin is not them and his set of circumstances is very different than any other kiddo we have crossed paths with.
i'll speak for myself: i need your prayers. i need God's miraculous hand to step in and save the day. gavin is still on oxygen. we seem to be moving in the right direction as he grows and develops but it could still be a while before he is completely off. i can't even begin to tell you how much i wan't him off of oxygen. up until about 2 weeks ago, gavin was having a horrible time with reflux. we would spend hours feeding him to have something gag him and then have it all come back up. i remember one day in particular where i fed him 14 ounces to only have 12 ounces end up on me and the couch and him and you get the picture. very frustrating!! he is now taking prevacid and zantac which is helping a ton. please pray for his eating and for his ability to keep his food down and to continue to GROW and DEVELOP. keep praying for gavin's eyes. right now his eye doctor just wants to take a look at him every few months to monitor things, but please PRAY that God would make all things new and all things corrected if there are any issues with his vision!
lastly is his low muscle tone. gavin continues to get physical therapy and early intervention activities with a developmental specialist. he has been making progress but as he is getting older i can see how frustrating it is for him at times to try and do the 'normal' baby stuff. rolling over is extremely hard. lifting his arms up to push his head off the ground is almost impossible right now. he can sit in a supported position with pillows and his boppy, but trying to sit on his own - we aren't there yet. this low muscle tone is a big question mark right now. there are so many potential things that can cause it, but nothing that we are aware of pertaining to gavin. please PRAY that God would intervene and deliver core strength to our son. PRAY that God would heal gavin's body in every way possible and that he would be able to function as a happy, healthy little boy. my heart aches for the desire i have for complete healing for my son. i can't begin to even describe the longing i have for restoration for gavin. maybe i just need to remain patient.

Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and His understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:28-31.

i'm not gonna lie. life has been tough for the past few years. even before gavin we went through some difficult circumstances and continue to struggle with the economy and changes to my industry. there are a lot of times where i just want to tap out - send the white flag up the pole - give in and give up. but...the Lord then shows me:

where can i go from your Spirit? where can i flee from your presence? if i go up to the heavens, you are there; if i make my bed in the depths, you are there. if i rise on the wings of the dawn, if i settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast. Psalm 139:7-10

nevertheless, i'm ready for this season to be over. please please pray for us and think of us. please pray for healing. pray for our finances and for our ability to handle what we have been given. please pray for our marriage and the strengthening of our relationship.
join us in petitioning for God's grace and mercy on us and on our precious boy gavin james:

love, jeramy

good report!

2011-02-21T14:17:00.000-07:00

hey there - i just realized it has been over a month for us since we posted last. i think with all of the emotional as well as physical stress we have experienced over the past 10 months, we have just desired to "take a break" whenever we can.
gavin was admitted to the hospital on february 8th for an overnight stay due to dehydration and a possible bowel obstruction. our heat went out during the coldest week of the year - yes, of course, something like that would happen to us. luckily, my parents took us in for about 5 days while i was trying to get the heat resolved. just to give you an idea: it was 46 degrees in our house one morning when i came back to take a shower and get ready for work. we ended up getting a whole new unit and it's been a completely different home since then! well...during our stay at my folks, gavin began to get bad stomach pains. he wasn't eating very well and he was throwing up almost everything we were putting down him. we tried pedialyte through his tube and even that wasn't working to keep him hydrated so we had to make some decisions. tracee was able to get a direct admit through our pediatrician so we could avoid the ER. this was a HUGE answer to prayer as RSV is in full affect right now. once again, that is the last thing gavin needs as it could shut him down and kill him.
once into the PICU, gavin had an IV put in and a series of tests run (uppper GI, tummy xray) and all of them came back negative. thank you God! he was released on februrary 9th after a successful feed. we determined that he has been struggling with reflux so we need to maintain the thickening of his foods. things have been fantastic since he has been home - he is doing so well! he saw his pulmonologist while in the hospital and gavin has dropped to .5ml of prednisalone every other day from being on .5ml everyday. he is still on less than .5 liter of oxygen - these are steps in the right direction!
gavin has been laughing more these days (tracee found a great tickle spot on the back of his hips and he LOVES it!)
since our last post he has seen his pediatric eye doctor twice to check on what appeared to be a crossing of his eyes. over the past month we have been having him wear an eye patch once a day for 30 minutes. he hates it...longest 30 minutes of our day! we visited the doctor again this morning and are pleased to report that we are holding off on the patching and will follow up again in 2 months after gavin turns one. he said that "gavin's eyes look the best they've looked." we like to hear that!
he is now up to 16.5 pounds and we have decreased his formula to 24Cal from 27Cal - all steps that gavin is taking to catch up. please continue to pray for us and for him. we don't want anymore surprises! financially things have been tough for us with settling on his medical bills and then dealing with new trips to the hospital and a car that needed $1450 worth of repairs. due to gavin's need for his Synagis shot to protect him against RSV, we have been paying $713 per month for COBRA insurance to keep he and tracee covered. we have 2 more months of that before we can look into some other solutions but until RSV season is over we are held hostage.
we know God provides as he has shown us time and again. thank you for keeping up with us friends and family! all of the other life "stuff" pales in comparison to how well gavin is doing and we are so thankful for his life. he is a miracle, our miracle. i love to have days like today where i get to spend all day with him. he is screaming and talking on the floor right now as i write this. i wish you could see my smile.
with love,

jeramy

extra! extra!

2011-01-16T17:57:00.000-07:00

gavin is doing so good lately with the amount of oxygen that he is requiring. if you remember, he was discharged from the nicu on one liter of oxygen (continuous flow). at times, he was anywhere from one and a half liters to two liters. as of today, he fluctuates between just a quarter of a liter and a half of a liter. this is such tremendous progress for him and we are so pleased to report it. also, we have been able to wean down a bit on his prednisalone (his steroid).

in addition to the wonderful progress with his lungs, we are super pleased to report that gavin is also taking full feeds occasionally. there are days we don't have to use his gastric tube, with the exception of using it for his meds. having the gastric tube has really helped get rid of the oral aversion problems that we were facing with g. he doesn't necessarily "love" to eat yet....we're still working on that. but......he's eating. and THAT makes us very happy.

enjoy your sunday....thank you for continuing to keep us in your prayers. they are working. i hope everyone can see that!

blessings,

new year. new outlook

2011-01-12T13:43:00.003-07:00

every year, millions of people approach the new year in one of two ways. one, they either become nostalgic-thinking back on all the wonderful things that happened in their life in the past year, OR two, they are so elated to see the passing of the previous year, focusing all of their attention on the year to come-hoping it will be anything but what they experienced in the past 365 days. i don't know how your 2010 was, but for me, i originally wanted absolutely nothing to do with it. my heartache in the last year overshadowed the happiness....and there was happiness. i was just too hurt to see it.

the biggest thing i have personally dealt with is the feeling of abandonment. that word may seem quite deep and a bit extreme. believe me, it is. but i felt it. i have never before been to the point that this journey has taken me to. at times, i didn't know how to handle it. i felt more isolated than the word "alone" does justice describing. even amidst the support of my husband, family and friends, I FELT ABANDONED. thankfully, i have a personal relationship with Jesus Christ; however, even with that relationship, i still struggled a ton. why was it that i felt abandoned by a God who is always with me? i really wrestled with that.

one thing about my journey over the past 9 months is that i changed a ton. i changed the moment i gave birth to that little boy. with gavin in such critical care, i began to take his life into my own hands. i watched skilled nurses and doctors save his life every single day. i learned how they did it. i listened and i asked questions because i refused to sit there while people talked about my child and not understand what their words meant. so yes, in some ways, i became very much like a nurse.

parents of typical children go about their day trusting that God will keep their kiddos breathing. but i watched machines breathe for gavin for months. and even now, i watch machines provide oxygen to him. and people control those machines. i didn't know how to balance that. i didn't know how to trust gavin's life to Him while doctors, nurses, respiratory therapists and even myself had SO much control over his outcome. it became exhausting to me. i couldn't sleep, i couldn't even think about anything else. it consumed me. and THAT is when i started to feel abandoned.

now, i am sure as an onlooker, the solution and answer is obvious to you. but it wasn't to me. when you are in the midst of a crisis, nothing is obvious. i see now how God is not only in the picture, but He IS the picture. gavin wouldn't even be here if God didn't have an ultimate plan for him. and gavin's life is HIS job, not mine. my job is to raise that boy to know Jesus. i am not supposed to have His job. it is exhausting for a reason. it isn't meant to be done by imperfect people.

originally, i did think about leaving 2010 behind without looking back twice. but that wouldn't be a good idea at all. God taught me a lot this year and it would be foolish of me to move past it having learned nothing-having not reflected at all. so....i will take it with me into 2011 and learn from it. i will constantly remind myself not to take gavin's life into my own hands (because i will forget) and i will remind myself that i am not alone and i will remember that in the times that i felt like i was.....He was right there with me.

i hope that you all have a wonderful year and if you had a rough 2010, i sincerely hope that you can find something to reflect on too....you never know how it can help shape your 2011.

all my love,

merry christmas!

2010-12-25T15:27:00.000-07:00

from our family to yours we want to wish you a very merry Christmas! gavin has really been on the road to recovery since his surgery a little over 2 weeks ago. closing out this 2010 and looking forward to what God has in store for us in 2011. we had a wonderful time celebrating Christmas Eve with my folks, josh and grandma von. it was her first time being with gavin and it was very special!
this morning we were up bright and early (thanks son!) and we had a beautiful time reading about the birth of Jesus in both Luke and Matthew.
this afternoon it's time to celebrate with the nikolin side while we have a mexican fiesta and open gifts and watch some games!
we just want to thank you all for your love, prayers and support of us during this very trying and difficult year. thank you so much for your comments along the way - they have really helped us feel your presence - making it just a bit easier to go through this.
looking forward to many more updates into the new year...

jeramy, tracee and gavin

surgery update

2010-12-10T12:04:00.001-07:00

gavin's surgery went well. they ended up not taking him back until 12:20 to start the surgery. i hated waiting. i know hate is a very strong word but i hated it....wondering what exactly they were doing at each moment. first they put gavin to sleep with a mask, then gave him a shot in his lower back, similar to an epidural. then they started his IV and intubated him. she ended up going in through his belly button and then inserting the tube and she went ahead and fixed his umbilical hernia on the way out. score! killing two birds with one stone, i'll say!

the doctor came out once his surgery was over and told us that the anesthesiologist was able to take him off the ventilator and that we could make our way up to the picu and he would meet us there. we walked with the doctor as she told us how the procedure went....(i wasn't listening). all i cared about was seeing gavin. where was he? i knew he wouldn't be awake yet but i just had to see him and know that he was okay. we waited outside the picu doors for only a few seconds before we saw the anesthesiologist and a nurse wheeling him toward us. he was on a mask and the anesthesiologist was trying to stimulate him so that he would keep breathing. although they extubated him, they had him at 15 liters of oxygen. to give you some perspective, gavin (who has significant lung disease) is on 1 liter at home and our concentrator at home only goes to 5 liters. in fact, jeramy and i didn't even know that oxygen could go that high. we know enough about his sats that just by looking at the monitor we knew that gavin was still struggling. he was satting in the high 70s/low 80s for his oxygen and his heartrate was low (which is why he needed the continuous stimulation). the anesthesiologist said that if didn't begin to show improvment and wean down on his oxygen, it could possibly lead to reintubation......no!!!!!

thankfully, over the course of the evening, he was able to wean down to 10 liters and then down to 3 and this morning, he is back down to 1 liter. praise Jesus! indeed, He has protected gavin once again and He has brought us through another trial.

today, we have gavin on continuous feeds (for a time being, you have to do that with g-tubes). the doctors (and jeramy and i) don't want to change anything about how we were doing feeds at home so we want to try to reintroduce bottle feeds to him. he was eating about 2 ounces by bottle and then we gavage 3 ounces. we tried giving gavin a bottle about 30 minutes ago (just an ounce) but he instantly started gagging and spit it right up. it didn't even get into his tummy. the speech therapist was here with us and she told us to expect that since he was just intubated. his airway is now floppy and his vocal cords are more open than they usually are because of the tube so...it is probably going right into his airway. we are going to give it a few more hours and try again. please pray that he eats. we fear that they won't let us go home until he shows that he can take an ounce or two and the last thing we want is to stay another night here in the picu. there are sick kiddos in other rooms around us and g doesn't need that exposure.

thank you for all of your support and prayers during this time. we greatly appreciate it. gavin is such a fighter. he is inspiring. he has tubes, wires and IVs everywhere and all he wants to do is play! he woke up this morning all smiles. he was giggling and cooing like crazy. the doctors and nurses were all amazed. they all said it is not typical for them to see such alert (and happy) behavior for babies after surgery. i love that kid.

we will keep you all posted on his progress (hopefully from home)! thanks again for the prayers.

i think it is very obvious that there is One who is making all of gavin's progress possible. to deny that, would be ignorance. he's not just a "lucky kid". i get mad when people say that. his progress has nothing to do with "luck" or "stars aligning". he is a little boy loved by the Heavenly Father-who has a plan. gavin has touched a lot of lives already. he's touched mine. has he touched yours? i hope so.

let us never forget that God is good....all the time.

on bended knee

2010-12-08T15:55:00.003-07:00

gavin's surgery is scheduled for tomorrow at 11:30. we check in at 9:30 where we will meet the anesthesiologist and get started. gavin will need to be intubated and put on the ventilator for the surgery. this is obviously our biggest prayer request because of his lungs. we pray that there are no complications coming off the ventilator and that gavin is able to return to the oxygen that he is on. a kiddo like gavin with his lung disease has the possibility to struggle coming straight off the ventilator since his lungs will love the break. fortunately for us, it is not a lengthy surgery. we are grateful for that. we are also grateful for the surgeon that we have. she is the best out there. in addition, we have a top pediatric anesthesiologist who also does a ton of work with nicu babies so he's use to the more critical, tiny babies.

we will be staying a minimum of one night in the picu. hopefully we will be able to come home on friday. Jesus, hear our cry. hear our plea. please hold our baby once more and get him over another hurdle, as You have already done so many times before. we trust in You.

please please pray for me and for jeramy as well. i know that we are both dreading being away from our baby tomorrow....even for a bit. i know that every mother out there can relate to the pain they would feel having their baby put under anesthesia. i think i would feel a thousand times more confident going into this if gavin's lungs were not as bad as they are. it makes me nervous...nervous to the point that i feel sick today. the good thing is that this kid is the toughest kid i have ever met and it is truly inspiring.

thank you for praying. specifically, we would love it if everyone could join together at the time of his surgery tomorrow and pray. 11:30. be there. be praying. our God is an awesome God.

family

2010-12-01T17:07:00.001-07:00

here is a picture from our first family photo shoot that we had. my dear friend natalie montez-miller took them. she is one of the most talented photographers in arizona and we were so blessed to get to spend this day with her. check out her site if you get a chance. her link is to the right (or you can go to photosbynatalie.com. this picture melts my heart...more to come soon!

mommy and daddy love you sweet pea!

surgery

2010-11-30T12:39:00.001-07:00

our worst fear has come true. gavin has to have surgery. we have made it so far without surgery for this little guy and for that, we are blessed; however, we are experiencing a wide array of feeding problems with this precious little boy. i had to place his feeding tube back in last week because he was not getting the amount of food he needed to gain weight. in fact, he was losing weight. gavin cannot lose weight. it compromises a variety of things for him that tend to cause everything to spiral out of control. his breathing becomes compromised because he doesn't have the nutrition he needs and it requires him to work harder and he doesn't receive the calories that he needs in order to grow healthy lung tissue. ultimately, our overarching goal is for his lungs to heal and without proper nutrition, they are unable to do so.

the feeding problems began for gavin about 4 weeks ago when he began to teethe. as exciting and "typical" as teething is, it presented some problems for gavin. all children develop excess saliva in their mouths as a result of teething; however, for gavin, the saliva caused him to gag a lot. because he was intubated for so long (2 and a half months), he has a condition called esophogeal dismotility. this means that he doesn't always feel the sensation that there is stuff pooling in the back of his throat or slightly down his throat and he won't swallow as often as he should like other children do as an every day reaction to that sensation. so he would gag. the problem with the gagging was that his ng feeding tube goes down his nose and into his stomach and each time he would gag on that excess saliva, he would throw up his ng tube and any food that was in his stomach whether it was a partial or even whole feed. it was so discouraging to us because feeding gavin is already a huge challenge in our household and it is a time that is stressful on us and on gavin. in an instant, 30 minutes of feeding could be wiped clean. so.....gavin wasn't getting the volume that he needed. i had to keep reinserting his ng tube and my poor baby just hates that (do you blame him??). we tried for a period of time to just feed him without the tube in and hoped that he would just take enough volume by bottle (since he is on high calorie formula-30 calorie). but, his lungs can't do that much work. it is too hard for him to eat that much and we see drastic increases in his work of breathing and his oxygen requirements.

after talking with doctors throughout the past week, we have collectively come to the conclusion that the answer to solving this problem is to have a gastric tube (which is also called a g-tube) surgically inserted into his stomach. the surgery will take about an hour to an hour and a half. now, i am well aware that kiddos have surgery every day. i understand that. but kids with lung disease don't. putting gavin on a ventilator seriously compomises him. the process of intubating a kid like gavin is difficult because gavin's lungs will LOVE the break and as "typical" kids are extubated right off a ventilator after surgery, gavin might not be as easy. as many of you, who keep up with our blog have read, it has been a challenge to get gavin to the place we are today. we don't want any setbacks.

jeramy and i are both ready for the g-tube. we know that it is what gavin needs. we know that it will give him the best opportunity to grow and develop without the stress of having to eat. we will still be able to give him bottles which is great for his development. we are looking at it as a short term solution to our problem and we hope and pray that this will not be a long process for him. hopefully, this is exactly what his little lungs need. that way, we can continue to play with him and do more developmental things with him. right now, feedings consume our days and make him so tired that he doesn't have strength for much else.

we are trying to make it until next monday when we have our consult with the surgeon. that means the surgery will likely take place tuesday or wednesday of next week. please pray that between now and then gavin's ng tube can stay in (that is how we are doing all of his feeds to give him a break). pray for skilled hands from the surgeon. pray that the anesthesiologist (who i hear is the best) can possibly do a partial intubation-just to the vocal cords and avoid the ventilator. pray for a fast recovery for our little sweet pea. and please please please pray for me and pray for jeramy. we are struggling. the battle seems never ending. we feel like we are wandering in the desert and we have no idea how long we are called to be out here. it is so easy to lose hope when there appears to be no end in sight. it is easy to lose hope when you can't feel His peace. i pray everyday for the Holy Spirit to intercede on my behalf. i am weak. i know God's Word reminds me that when i am weak, He is strong.

i'm sure glad someone is...

thanksgiving

2010-11-27T12:23:00.002-07:00

so many things to be thankful for this year. i am thankful that i have a little boy that i get to hug and kiss, that i get to tuck him into bed every night, that i get to watch him grow and learn new things, and that God spared his life. i am thankful that i have a wonderful husband to walk through life with. there is not a doubt in my mind that what we have gone through would most definitely break most marriages. jeramy is my angel.

we had a great thanksgiving. we had my parents and sister over to our house, along with jeramy's parents and his brother, josh. unfortunately, we were unable to have his sister, her husband and their precious kids join us because of the risk of possible exposure to gavin but they were missed indeed. we also missed my sister's husband, Ryan who is a firefighter and worked that day :(

i loved hosting thanksgiving. i made my first turkey this year! i brined it for a few days and did a dry rub on it with a variety of herbs and seasonings. so yummy, so tender and juicy! the recipe is a definite keeper...go food network! we had so many yummy things on the menu and i just love going overboard on the decor and with the presentation of everything! :) jeramy knows that if i host something, it is going to be overdone for sure. is there any other way?? ha ha!

it was so nice to have family here at the house and to enjoy gavin at this very fun stage he's in. he talks/babbles a ton! gosh he makes the best noises. we praise Jesus for his progress every single day. of course we had to get him into a cute little thanksgiving outfit! i can't help myself. thank you mom for his onesie...so adorable! here is a picture of the little turkey! :)

we feel so blessed beyond belief. 24 week babies don't survive everyday, let alone with the outcome that gavin has had. no brain bleeds, surgeries, or physical deformaties. he is a miracle and this thanksgiving reminds me of my friends whose precious little babies-some 24 weeks old and some older-didn't survive. i think of each of you everyday. you are always in my prayers.

let's all remember to be thankful for our children this year.......may we never forget how blessed we are.

gavin!

2010-11-23T19:41:00.001-07:00

dude!

mommy and gavin when he was in the picu (not super recent-don't worry)

gavin sleeping

gavin and his aunt christy

gavin and his little tool man outfit

gosh, he's cute.....

another day, another doctor

2010-11-23T19:18:00.000-07:00

the past few days have been eventful to say the very least. i mean...for those of you who read our blog regularly, i am certain you are far from shocked. it seems as though the calm always comes right before the he storm. as i said in the last post, gavin's feeding tube was out. yay! well, we had tried taking it out for a bit but he just wasn't getting the volumes that he needed to gain weight so we decided to put it back in. gavin also started teething...which is AWESOME. however, along with the teething comes a lot of excess saliva and since gavin has a tough time sensing that there is stuff in his throat all the time (because he was intubated for so long), he has started gagging randomly when he gets too much of it back there. the only problem is, if he anything in his stomach (formula), it is going to come right up. the tube that goes down his nose and into his stomach doesn't weigh a lot and when he gags, even the slightest, he starts throwing up and then can't stop and ends up throwing up his entire feed. so....that has been happening about once a day (sometimes more). gavin hasn't been gaining weight because of this and he needs to gain weight in order for his lungs to grow and develop. we would love to be able to give gavin all of his volumes by bottle (which we thicken anyway) but he doesn't have the strength to eat that much. he also seems to be getting some oral aversions since he has been throwing up so much lately...poor baby! it just breaks my heart.

we went to see his pulmonologist yesterday and his pediatrician today and we were referred to a great gastroenterologist in scottsdale. we will be meeting with her next week to come up with a different game plan for gavin. right now, we don't know what that is going to be. it could be a simple fix (hopefully) like a different high calorie formula. we already have him on super high calorie formula though. we know it isn't a lactose thing so at least we've ruled that out. another thing she might do is an nd tube instead of an ng tube. an nd tube goes a little deeper and is weighted a bit more and hopefully wouldn't come up as easy as an ng tube. the only problem with that is that placement has to be checked with an xray. i love being able to insert his ng tube and check placement if he needs it. the last thing we need this winter is to be frequenting hospitals around the valley! :) one thing we want to avoid is a gastric tube, which is surgically inserted into his tummy. i just don't think we are to that point quite yet and we definitely want to explore all of our options first.

gavin gets his first synagis shot tomorrow, which is the rsv antibody. we are looking forward to getting some of those under our belt since there have already been cases of rsv in the valley. gavin cannot get rsv. as blunt as this sounds, it could kill him. we ask that you pray against that specifically please.

i will be posting some new pictures of gavin tonight! be sure to check back in!

the smell of rain

2010-11-15T11:52:00.001-07:00

a wonderful friend of mine emailed this story to me. my friend is also the mommy of a micropreemie. when you read this story, please remember that gavin AND my friend's baby were even tinier than this. gavin was 1 pound 3 ounces. my friend's baby was 1 pound 2 ounces. miracles happen everyday. our little boys are living proof of that. this mom's story about her little girl is so touching. i hope to hear Gavin say something like this one day because there is not a doubt in my mind that God was with him when we couldn't be....

The Smell of Rain

A cold March wind danced around the dead of night in Dallas as the doctor walked into the small hospital room of Diana Blessing. She was still groggy from surgery. Her husband, David, held her hand as they braced themselves for the latest news. That afternoon on March 10, 1991, complications had forced Diana, only 24-weeks pregnant, to undergo an emergency Cesarean to deliver couple's new daughter, Dana Lu Blessing. At 12 inches long and weighing only one pound nine ounces, they already knew she was perilously premature.

Still, the doctor's soft words dropped like bombs." I don't think she's going to make it," he said, as kindly as he could." There's only a 10-percent chance she will live through the night, and even then, if by some slim chance she does make it, her future could be a very cruel one." Numb with disbelief, David and Diana listened as the doctor described the devastating problems Dana would likely face if she survived. She would probably never walk, she would possibly never talk, she would probably be blind, and she would certainly be prone to other catastrophic conditions from cerebral palsy to complete mental retardation, and on and on. 'No! No!' was all Diana could say.

She and David, with their 5-year-old son Dustin, had long dreamed of the day they would have a daughter to become a family of four. Now, within a matter of hours, that dream was slipping away. But as those first days passed, a new agony set in for David and Diana. Because Dana's underdeveloped nervous system was essentially 'raw', the lightest kiss or caress only intensified her discomfort, so they couldn't even cradle their tiny baby girl against their chests to offer the strength of their love. All they could do, as Dana struggled alone beneath the ultraviolet light in the tangled tubes and wires, was to pray that God would stay close to their precious little girl.

There was never one specific moment when Dana suddenly grew stronger. But as the weeks went by, she did slowly gain an ounce of weight here and an ounce of strength there. At last, when Dana turned two months old. her parents were able to hold her in their arms for the very first time. And two months later, though doctors continued to gently but grimly warn that her chances of surviving, much less living any kind of normal life, were next to zero, Dana went home from the hospital, just as her mother had predicted.

Five years later, when Dana was a petite but feisty young girl with glittering gray eyes, she had an unquenchable zest for life. She showed no signs whatsoever of any mental or physical impairment. Simply, she was everything a little girl can be and more. But that happy ending is far from the end of her story.

One blistering afternoon in the summer of 1996 near her home in Irving, Texas, Dana was sitting in her mother's lap in the bleachers of a local ball park where her brother Dustin's baseball team was practicing. As always, Dana was chattering nonstop with her mother and several other adults sitting nearby when she suddenly fell silent. Hugging her arms across her chest, little Dana asked, "Do you smell that?" Smelling the air and detecting the approach of a thunderstorm, Diana replied, "Yes, it smells like rain." Dana closed her eyes and again asked, "Do you smell that?" Once again, her mother replied, "Yes, I think we're about to get wet. It smells like rain." Still caught in the moment, Dana shook her head, patted her thin shoulders with her small hands and loudly announced, "No, it smells like Him. It smells like God when you lay your head on His chest."

Tears blurred Diana's eyes as Dana happily hopped down to play with the other children. Before the rains came, her daughter's words confirmed what Diana and all the members of the extended Blessing family had known, at least in their hearts, all along. During those long days and nights of her first two months of her life, when her nerves were too sensitive for them to touch her, God was holding Dana on His chest and it is His loving scent that she remembers so well.

one day i overheard jeramy talking to gavin. he said, "gavin, what does He look like? what does Jesus look like? i bet you've seen Him, haven't you?" jeramy said this to gavin with tears streaming down his face and i will always remember that moment. we always prayed for Him to hold gavin in His arms when we couldn't, when we weren't able to even touch him. i know He did. and i know that gavin felt it.

we love you all so much. gavin is doing well. he weighs 14 pounds and currently has NO feeding tube! yay!! please pray that he can continue to take his volumes and put on weight so we can keep it out. also, please pray for g's health during this cold/flu season. pray that we stay out of the hospital and that we ALL stay healthy!

blessings,

point of view

2010-10-29T15:34:00.003-07:00

yay!! gavin qualified for ddd (developmental disability). this means that g will be receiving services in our home instead of having to travel to them. these services include physical therapy, speech therapy (they work on feeding goals), and we also get a developmental service coordinator. these three people will come to our house both separately and sometimes together to work with gavin. that's three hours of services each week! praise God! i am so confident that gavin will continue to make progress as we move forward! he's such a rock star. at our meeting on monday, i received a packet of papers for gavin. if there's one thing i have discovered in this process, it's paperwork, paperwork, paperwork......oh, and PHONECALLS! I have taken on a "browse" type approach to the what i deem the "unnecessary fillers" in each of the packets we receive. however, one paper caught my attention this week. it was titled, "welcome to holland". for all of you wondering what it has been like mourning the loss of what "we had originally planned" for ourselves, this article written by a parent in our shoes perfectly depicts what it is like. because as i sit here today......our life is perfect.........just as He had planned it to be.

Welcome to Holland
By: Emily Perl Kingsley

I am often asked to describe the experience of raising a child with special needs-to try to help people who have not shared that unique experience to understand it. To imagine how it would feel...it's like this..........

When you're going to have a baby, its like planning a fabulous vacation trip-to Italy. You buy a bunch of guide books and make wonderful plans. The Coliseum, Michelangelo's David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean Holland?? I signed up for Italy. I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you'll stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you must meet a whole new group of people you never would have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for awhile and you catch your breath, you look around and you begin to notice that Holland has a lot to offer. Holland has windmills.....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy.....and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say in your head, "Yes.....I know how great Italy is. I had planned to go there too."

And the pain of that will never, ever, ever, ever go away.......because the loss of that dream is a VERY significant loss. But.......if you spend the rest of your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, very wonderful things.......about Holland.

i just loved that!!! i think it is a great picture of where i am at, personally. gavin is a miracle.....nothing short of it. there is not a doubt in my mind that he will continue to get stronger and stronger. i have faith in a very big God to get us there. however, i know that the road to getting him there is a long one. it is a road that is filled with appointments, therapies, and possible surgeries. my job as his mommy is to do EVERYTHING i can to get as much support for him! the earlier the better! that's exactly what we are doing. and we will continue to do it.....

we, as always appreciate your prayers. and honestly........i ask sincererly for sensitivity. we have very fragile moments. this has been a very tough time for us. although we LOVE our son more than words could ever describe and although we have grown accustomed to this "way of life", we are still mourning the loss of what many consider as "typical" and "normal". thank you for loving on us during our sad days and rejoicing with us during the happy ones. lately, there have been more happy ones. i'd say that's a pretty good thing :)

all my love,

ps. the boys taking a snooze...

it's a new month

2010-10-01T10:06:00.000-07:00

we made it out of september. i celebrated my 32nd birthday on the 28th with family (at home) as we continue to work to get gavin healthy. since i wrote last, gavin had to be taken to the ER last sunday night because he was choking and couldn't seem to catch his breath. gavin has a feeding tube in his nose right now to help his lungs heal because he had been aspirating all of his feeds. basically every time he would swallow his food would end up in his lungs making it that much more difficult for his lungs to heal! as part of his cares, we are to check his tube placement in his stomach by measuring it from his nostril and listening to his belly with a stethoscope by injecting a small amount of air. well...gavin was experiencing some bad gas and was very uncomfortable so i injected some gripe water (designed to relieve colic and upset stomach) into his tube without thinking to check. within a minute or two of giving it to him, he started to sputter and choke and we had to immediately pull his feeding tube. once he started to settle down, we had a nurse friend of ours come by and re-insert a new tube. everything seemed to be ok until his feed about 11:30pm. within a few minutes of feeding him through his tube he began thrashing and was visibly agitated. we quickly pulled his tube again and gathered everything together - got him in the car and headed to the ER. we now keep a bag ready to go at all times so we can head out the door quickly if we need to. not what we want to do but we've learned!
i prayed that God would go before us and help us with the right dr.'s, nurses, etc. we got him in, checked him out, took an xray and then had him admitted overnight for observation. he was up to 2 liters on his oxygen at the time we brought him in.
thankfully, gavin didn't have to be IV'd or any blood drawn for this stay! however, he had a very rough night as they didn't re-insert his feeding tube until morning and he just cried all night with tracee because he was hungry. i didn't experience that part as i went home about 3am. poor guy! poor tracee! important note: the PICU sent us home with the wrong tubes for gavin's feeds - so the one that we had re-inserted at home was causing him agitation. doesn't that just fit our journey?? we were upset with the PICU staff that didn't have the knowledge to know that what they gave us for gavin isn't what is to be used.
we were able to take him home on monday afternoon and he had been weaned down to 1.5 liters at time of discharge. before we left on monday, our pulmonologist took a sinus xray to double check what was going on for gavin. within a few hours of getting him home monday we had him turned up to 2 liters again. it just didn't make sense how he was doing so well at the hospital and now was struggling again at home?
we got a call on tuesday to determine that gavin had a sinus infection! the radiologist who looked at his sinus xray determined that his maxilary glands were either so blocked up that they couldn't be seen or they were extremely under developed. they called in a 10 day antibiotic for gavin and he has been on it now for 3 doses. during this time tracee and i have been suctioning out all kinds of gunk that saddens our hearts because we know how hard it must be for gavin to breathe with this in the way, and his weakened lungs.
i am attaching an email dialogue i had yesterday with some dear family friends regarding this:

Hi Jeramy and Tracee,

This morning in my devotions I came across this verse in Romans and I had to share it with you.

Romans 15:30 - "I urge you, brothers, by our Lord Jesus Christ and by the love of the Spirit, to join me in my struggle by praying to God for me." The footnote says - "Prayer is...a weapon in all believers' armor as we intercede for others who join in the fight against Satan." I could also add....In the fight against weakness, against discouragement, against worry, against anxiety, against exhaustion, etc., etc. Whatever the struggles are, Gene and I stand with you in prayer.

Our small group Bible study meets on Wednesday nights. It's an awesome group of mature Christians. We have all been praying for Gavin's development, and your stamina and spirits. Know that you are loved and supported. May God use you as a tremendous witness to the whole hospital staff as they watch how you deal with all of this stress. I pray for God's supernatural strength when you just don't think you can go on.
With our love,

Gene and Norma

Here was my response:

Norma,

I have tears in my eyes right now as I read this. I am feeling a little under the weather today. Fatigue for Tracee and I is an understatement. Nevertheless, we continue to push on. Thank you for the prayers for me and my family. They are so coveted and so necessary with the turmoil we continue to endure.

Gavin has a sinus infection right now that has really been taking its toll. You just can’t imagine the pain it brings Tracee and I to have to perform various medical procedures (like power suctioning his nose and mouth) when he just cries and struggles to breathe and looks at us with fear in his eyes like “why are you doing this to me???”

I often put myself in Gavin’s position and God is us and I’m crying and asking: Why are you doing this to me?”

Thank you so much for your donation to Gavin’s account – we so appreciate it and know that it goes to providing for his needs and the continued unexpected turns we take with his health care.

I feel encouraged hearing that there are people out there praying for us by name and lifting us up. There’s a battle that rages on and the spiritual warfare that we are experiencing is real and rough. The nights are hard – Gavin usually has his toughest times on nights and weekends when most of our life lines are unavailable.

Thank you to you guys – we love your hearts for us!!
this morning it felt as if gavin was starting to feel some relief from this infection. "let the morning bring me word of Your unfailing love for i have put my trust in You." amen. we are looking forward to being on the other side of this sickness and for him to feel better and not have to work so hard. tracee and i continue to focus on being thankful for each other and for gavin. i hope this update finds you all blessed and well. thank you for helping lift our hands up to God during this time like the people did with moses.
one final thought: i loved reading the comments from the last post as so many of you shared how this blog was passed along to you from someone else and how groups of you lift us up in prayer along the way. that is so encouraging! it overjoys our hearts to know that and it seems to help ease the burden in some supernatural way.

jeramy

the hits just keep on coming

2010-09-20T10:18:00.001-07:00

it has been so long since i had a chance to write last let me first say thank you for continuing to check the blog and having faith that it will, at one point, get updated again! gavin has been in and out of the hospital - we had him home from the NICU the first time for 30 hours, then rushed back to the ER and readmitted to the NICU for another 16 days - then home again with us for 10 days and back by ambulance to the ER at Banner Samaritan before being transferred to the PICU at Scottsdale Shea on September 9th.
we brought gavin home (again) last wednesday the 15th.
we had another scare over the weekend as his heart rate was tracking in the 180/190s and i couldn't seem to bring it down. he has had horrible gas from his feedings and so with that and his obvious lung disease i called everybody i could think of (pediatrician, NICU, PICU...) and the bottom line is that i didn't get a lot of direction as it's all one big cat and mouse game because nobody wants to step on anybody else's toes with telling us what to do for gavin other than "you might want to just take him into the ER."
for us, we feel torn either way: we take him in and he gets IV'd, poked prodded and a bunch of tests run plus being subjected to potential illness VS. leaving him home with us and keeping him there too long to where we put him in harms way because has no lung reserve. tracee and i just cried on the couch saturday afternoon as we experienced this dilemma. we are worn out and always on edge with what to do for him.
tracee's parents came over and helped us keep an eye on gavin saturday night. we just prayed and cried out to God for mercy and grace. tracee concluded that we should put him down and let him swing for a bit to calm down. her mommy intuition was good and gavin began to settle down and his heart rate started to come down into the 140/150s range where it should be for gavin.
he has been fighting a cold for the past few days and i think i already mentioned the gas but it really irritates him and puts him on edge for hours at a time.
tracee and i are shifting with gavin throughout the night: i typically sleep from about 10 - 1am and then she goes to sleep from about 1am - 7am and then i go back to bed for a few more hours.
saturday night, tracee was hit with her epilepsy condition that comes on when she doesn't get enough sleep and/or is stressed out. it makes her shaky and causes her to drop things. cleary with that going on, she wasn't able to care for gavin so i stayed up with him all night and allowed her to get about 9 hours of sleep. that was exactly what she needed as she felt better by 1pm on sunday afternoon. once again tracee's parents came over to help relieve us so i could go back to bed - i slept from 10am - 3pm to get caught up.
here it is monday morning and i'm back to work and tracee is home with the day nurse getting ready to take gavin to his doctor's appointments at the hospital to see the developmental pediatrician. everyday it is something: pulmonologist, pediatrician, physical therapy, evaluation appointments, etc...
pray for relief for us. pray that an end would be in sight and that we would be able to get the break we so desperately need. we are both very frustrated and ticked off at this point. i don't know what else to do and a lot of times i have no words for what we are going through. it's so painful to watch your bundle of joy suffer in front of your very eyes. we pray for very real needs like normal breathing with normal lungs. we don't pray for trivial things like a new car or a really great vacation.
i'm not sure what post traumatic stress disorder looks like but i can imagine that tracee and i are dealing with it. i can't imagine that it is any good for your body to live off of adrenaline for 6 month's straight but that is what i've been doing. WE PRESS ON! we don't have a choice - we are fighters and we will push through the crap and get it done. gavin knows that when he cries for mommy and daddy that we are there and that we will be there every step of the way.

jeramy

ready...set...go: almost...

2010-08-17T15:35:00.000-07:00

once again i apologize on the delay with the blog. we have had a whirlwind of activity going on since the last post. gavin was discharged from the hospital on thursday, august 12th at around noon. that momentous occasion for us was short lived. by friday evening gavin's work of breathing had increased and he wasn't settling down. as midnight approached it became apparent that we needed to take gavin to the ER as i told tracee "i don't feel equipped to be able to care for him at all." gavin was sent home on 1 liter of oxygen and by this point we had him turned up to 3 liters en route to the hospital. we were able to slide past all of the sick people in the ER (which was a huge priority and blessing for us) and within minutes people were running around and care began. gavin was very gray in color and his lips and extremities were beginning to turn blue. based on how he looked the ER doctor wanted to intubate him to which we fought and asked them to wait a few minutes. because gavin's baseline of breathing is so different than a regular baby he has a different threshhold. gavin had been turned up to 5 liters of oxygen and his sats were not coming above 78-80. It became apparent that things were seriously wrong and i could see the scared look in his eyes. both tracee and i began to freak out although mine lasted much longer than hers. i thought i might lose my little baby boy right there on the table as people scrambled around and they brought the coding cart into his room "just in case."
at the suggestion of someone from the NICU they gave him a treatment of Albuterol and that immediately dialated his airways to where he could get the oxygen he needed. praise God!!! some of my fears were then relieved and i burst into tears when we saw a couple of staff members from the NICU who were down to grab gavin and take him back up to what we have come to know as a very safe place. because gavin had only been gone a couple of days, they were able to readmit him to the NICU. thank God!! these are the people who know everything about gavin and fight for gavin and know how to care for gavin. we were at peace knowing we didn't have to worry about explaining ourselves to a team of people who didn't know gavin! they place gavin in an incubator and rushed him upstairs to an isolation room in the NICU and immediately got him hooked up to CPAP. side note: gavin hates CPAP and yet he didn't even care. he flopped his arms back behind his head and probably felt like a million bucks knowing he could finally breathe. that's a hard thing as a parent. we never want to relive what we went through a couple of days ago. i know that our minds and bodies are going through shock. our brains have sort of cut us off from the traumatic pain we have been going through as we attempt to unpack everything.
gavin is back in the NICU for round 2. we don't have a go home date in sight yet and everyone is on board with tweaking his cares so that we don't have a round 3. we need better monitors for home than we had before. we need better support at home than we had before. we need humidified and purified air - where we didn't have it at home before. tracee and i have to wrap our minds around the fact that we cannot just normalize this situation. we are having to mourn the loss of a typical birthing plan, typical delivery, typical baby and typical routine with baby once home. it's hard. it's painful. we are going to have to live in a bubble for months as it is almost RSV season. while RSV can really slow down a full term, healthy baby, RSV can kill gavin.
please pray for us. we need support on so many levels. if you feel led to give to us than we have an account set up for gavin at wells fargo. if you feel led to help out with meals we need to have that up and running again. this is a time in our lives where we are needy. i don't like to be in this position but i don't have much say in the matter apparently. please continue to comment and message us and reach out on facebook, etc. we love reading your comments and affirming us as we persevere.
may you all continue to be blessed in your lives and may our story and gavin's life touch you in some way or another.

jeramy

he'll be comin around the mountain when he comes...

2010-08-02T14:01:00.000-07:00

it's been quite some time since the last post and for that we are sorry. we had to move due to our rental being short sold and so we have been scrambling over the past month to find a new home. as God would have it, He provided a great new place for us to live in and it all came together in the last hour as we finalized everything with some good friends of ours about 10 days before we had to be out of our old place! they are looking to buy a new home and they suggested out of the blue "why don't you rent our place?" well...we took them up on it and everyone kicked it into high gear to make it happen in record time. we began painting their whole place (tri level home) on thursday, july 22nd and worked late into saturday night while tracee ran off for gavin's baby shower that was hosted at some of our wonderful friend's home. last sunday we gathered some troops and rented a u-haul and got everything moved over and in. the good news is that our new place is only 5 minutes from our old one and it keeps us in the same basic area which we love! the bad news was that it was 111 out and humid so we were just getting killed all weekend. since then it has been non-stop with projects all over the place to get things in order! both tracee and i have been working tirelessly to make this new house a home and by gosh i think we are actually getting there.
in the midst of all of this, i continue to go to work and we continue to make our trek over to the hospital to see gavin. this thursday will be 4 months since he was born. let that sink in for a minute...4 months of visit after visit and hour after hour spent at the hospital to be with our precious baby boy. tracee and i determined we have put over 10,000 miles on our car just in trips to the hospital and back. WE NEED A VACATION!!
gavin is doing awesome - he is now 6 pounds 15 ounces and taking over 2/3 of his daily feeds from the bottle. he is getting 60mL's of food every 3 hours and they are still pumping him full of 30cal food (rocket fuel) to help him continue to grow due to the fact that he expends sooo much energy to breathe! since we wrote last gavin has moved completely off of CPAP and gone to the high-flow canula where he has been getting high pressure oxygen through the little prongs in his nose. this has been so exciting for us because he has absolutely loved being off of CPAP...he hated that mask! he is a much happier baby now and spends most of his time eating, sleeping and breathing...although he does find some time to play with us! he is almost 42 weeks now so he's a mature baby :-). gavin started at 4 liters of oxygen and has been weaned all the way down to 2.5 liters with continued changes on the way.
we ask for your diligent prayers to continue for his eyes as we need them to be fully vascularized. because he is on oxygen and won't come home on blended oxygen (like he gets in the NICU) they will have to switch him to 100% at a lower flow and that can mess with his blood vessels in his eyes if he isn't fully vascularized. so....it's very important to us because we aren't sure if we can bring him home unless his eyes get to where they need to be and that's the question mark right now.
all in all, we are so pleased with gavin's progress and we thank and praise God for what He has done and how much He has healed gavin over his short, but eventful, little life. he is such a fighter and we can't wait to show him off to everybody we see - especially our faithful prayer warrior friends!!

jeramy

perspective

2010-07-19T23:37:00.001-07:00

i just got home from the NICU a bit ago this evening and i caught something on TV that really made me stop and think about what gavin has had to go through. it was about people's attitudes that face adversity and just how positive some of them are. tonight as we were visiting with one of the nurse's and one of the nurse practitioner's i really understood that gavin's lungs are the worst lungs they have ever seen on a baby. wow. we knew they were bad and "some of the worst" but didn't really understand the magnitude being where we are now. my sister gave birth to a beautiful and healthy baby boy name asher. he was 7 pounds 4 ounces born just before 2pm. he's camped out just across the hall from gavin - just outside the NICU. it is fun to bounce back and forth to see both of these little boys and to really see the different paths they have taken. check out gavin vs. asher's footprint:

gavin was to be born this thursday. it's hard to even imagine tracee still pregnant right now, preparing to have him. needless to say, that didn't happen and we received our very critical bundle of joy three and a half month's ago. he has fought and fought since day 1 to get to where he is now. i don't want to discount that at all. i am so proud of my son. i wonder if i have that kind of fight and drive like gavin does? i sure hope so. it's inspiring and it's touching and it makes me want to be a better dad and a better husband. i love that my son has been teaching me...aren't i supposed to do that for him???!!!

we forget. i'm not sure if we can help it - we just do. i think that is why Jesus had his disciples partake in communion and He told them "do this in rememberance of Me..." we need to be reminded. it wasn't too long ago that we coined the phrase about 9/11 "we will never forget." but...the reality is that a lot of us have forgotten to some extent - we certainly don't feel the same today as we did on that dreadful day, or as we did even a week later when patriotism was at an all time high. hey, it is what it is - but i REALLY don't want to forget about what we have gone through and what God has taught us and how He has used gavin's life to shape who tracee and i are today. gavin is a special little boy but i don't think i had to tell all of you that, right?

ps. gavin went to all day high flow nasal canula today and is no longer on CPAP! pray that God will sustain him and this gets us 1 step closer to the door!!

jeramy

my two blessings

2010-07-14T19:05:00.002-07:00

thank you Lord...i'm the luckiest girl in the world!

joy comes in the morning

2010-07-14T18:55:00.002-07:00

the pediatric opthomologist came to the nicu yesterday to do gavin's eye exam. he found that the blood behind his eyes is gone and that, although he still has stage one and stage two ROP, it appears to be beginning to correct itself. PRAISE JESUS! the nurses and doctors are amazed that it is getting better already. they told us to expect it to get worse before it got better. i know with all my heart that God was in the center of this. this was no medical miracle. this was no "lucky situation". this was God. this was His choice and His timing. i want to personally thank each of you who prayed. please recognize that God hears our prayers and He answered them. from this point on, it is very important that the nurses closely monitor gavin's oxygen levels and saturation to ensure that the ROP continues to correct itself. the doctor will see him in another two weeks to check on the status of the ROP and to see if his eyes are vascularized. once they are fully vascularized, the ROP is no longer a concern. i called jeramy immediately after the doctor left and cried tears of joy with him. as you all are well aware, this has been such an emotional journey for us and this really was one of our last hurdles before getting ready to go home (aside from some hernia surgeries prior to discharge). i came home from the hospital in the afternoon and was actually able to get some much needed rest. thank you Lord.

oh, here is a picture of gavin bundled up in his big boy crib...he's 5 pounds, 5 ounces today!

today has been a great day...gavin is 100 days old! my brother-in-law, matt, made him a onesie that said "i'm 100 days old". it looks adorable on him. i will post a picture later tonight! he was being so funny today. when i got there, he was in his crib looking at his mirror. he was totally playing all by himself!!! he was making a bunch of little noises and was wide awake. i was laughing hysterically! i realize what a blessing this little boy is and what a miracle God has given to us. it also shows me how days in the nicu can be so scary one minute and completely joyous the next. i guess i'll just go with it. :-)

"when our days are filled with crying, we can trust that God, in time, will again bring laughter."
~janette oke

no accident

2010-07-09T17:01:00.002-07:00

today has been hard. really hard. I slept very little last night and my attempt to take a nap this afternoon failed. i cannot seem to stop crying today. gavin had another eye exam yesterday. he has stage 2 ROP (retinopathy of prematurity). since he was so premature, his eyes hadn't yet fully vascularized. the ROP means that his blood vessels have some abnormal growth. the stages go from 0-5. stage 4 and 5 are basically retinal detachment (blindness). the doctor that he sees for his eyes treats ROP at stage 3 before it even gets to those levels. if his ROP gets to a high level 3, the doctor would have him transferred to either phoenix children's hospital or st. joe's for laser surgery where they would cauterize the blood vessels where they are abnormal/tangled in hopes that they would grow straighter. so, we are on our knees praying for yet another miracle. sometimes, stages 1, 2 and even 3 can correct themselves. we pray earnestly for that.

i came home from the hospital this afternoon in hopes of getting some rest. but like i said, my attempt failed. as i was sitting on the couch crying, i saw our Bible that jeramy had left open this morning. it was opened to the book of luke. i kinda found that odd at first since i typically associate the book of luke with Christ's crucifixion and resurrection. but as i flipped through the pages, i saw miracle after miracle after miracle. i read the words aloud in the quiet of our home. "the blind receive sight, the lame walk...the deaf hear, the dead are raised". i read numerous chapters aloud in the book of luke today and it reminded me that the God we serve still performs miracles. we have watched Him perform miracles already. so, we ask for another. we ask on bended knee for gavin's eyes to heal, without surgery. please join us in that prayer. his next eye exam is next thursday, july 15th. let's all join together and pray that God performs a miracle on our little boy's eyes. it is not out of His control...i trust that.

i am weary today...weary to the point where i can't even sleep. as i was reading through luke, i came across chapter 7, where Jesus raises a widow's son from the dead. it said "as He approached the town gate, a boy was being carried out - the only son of his mother. And a large crowd from town was with her. when the Lord saw her, His heart went out to her and He said, "don't cry." i believe with all my heart that this was no accident. it was the message i needed to hear today.

i serve a compassionate God. He hasn't failed me yet...

one day at a time

2010-07-06T17:33:00.002-07:00

gavin was 3 months old yesterday. i can't believe it. well, actually, i think i can. so many people think that time has flown by and they can't believe it has been that long, but we feel like it's been even longer. time is really beginning to crawl in the nicu. this is the point in the stay where parents of long term nicu babies tend to develop nicu-itis. oh, we have it for sure. we so desperately want him to be home with us and the fourth of july really hit me for some reason. as we gathered with family and friends to watch the fireworks, a part of me felt so empty. it was obvious to me that something was missing. there were strollers everywhere in the park as families around the valley gathered to enjoy this holiday together. as i watched the fireworks, tears came to my eyes as it hit me that gavin was missing it. now i know that gavin is a baby and would have more than likely slept through them, but still....he would've been there. this was our first "holiday" with a baby and we had to celebrate without him. however, i look forward to thanksgiving and Christmas when i know he'll be here.

gavin is making a ton of progress lately. he is currently on his fifth round of steroids and will remain on steroids until he gets to a reasonable amount of oxygen. the problem we face is that gavin loves his steroids. he makes great progress while on them but has a tendency to take steps back when they take him off. as we faced reintubating him and putting him back on the vent a few weeks ago, steroids were the clear choice. he is able to do developmental things now that he isn't on the vent. on cpap, he is able to have physical therapy, occupational therapy, and even massage therapy. also, jeramy and i are able to provide ALL of his cares for him, just as if he was at home with us. it's crazy how excited we get that we get to pick him up by ourselves now, put him back in bed by ourselves, and even give gavin baths...real baths! we are overcome with joy when we get to spend that time with him!

so, like i said, gavin is on cpap (the mask that helps his lungs stay open as it provides pressure) where he does all the breathing by himself. yesterday, they started sprinting with him. that means that for 3 hours a day, the respiratory therapists put him on high flow canula. if you've been keeping up on previous posts, you may remember that when he is on high flow canula, he can begin to nipple feed from a bottle. we are unable to do that on cpap because it can cause him to aspirate. yesterday, gavin got his first bottle! he was sound asleep as jeramy, gavin's nurse and i tried to stimulate him to wake up. he was sucking pretty well but not quite strong enough to get much out of the bottle. hopefully, when we try it tonight, he will be more awake for his feeding. so, he will transition onto high flow canula for 3 hours everyday. once those 3 hours are finished, he goes back on cpap...regardless if he's doing well. the neonatologist described it as preparing for a marathon and we don't want gavin to get worn out. the thing about gavin is that he loves having the mask off his face that he could be collapsing down and not show many signs leading up to it because it is so enjoyable for him to not have anything on his face. ahh...the personality already....i love it!

so please pray that as the doctors evaluate his progress each day that we can move closer and closer to getting to the high flow canula full time. we know it is still a long road ahead as gavin has the sickest lungs they have seen. that's our reality. so, we push ahead, one day at a time, knowing that God is still at work and that His timing is perfect. i don't get it and jeramy doesn't get it....but we rest in the fact that God does. please pray not only for gavin, but for us as well. this has been quite the journey for us. the agony we feel every day is so real and unlike anything we have ever experienced. i have prayed the same prayer every day for 91 days. with joy, we have gone to and from that hospital twice a day to spend time with our precious miracle. i love our moments with him but i CRAVE normalcy. we are so weary.....at this stage we need people to love on us and lift our arms to Jesus when we are too weak to do so. we love you all and appreciate you walking alongside us throughout this journey.

big day

2010-06-20T23:06:00.000-07:00

i just realized it has almost been 10 days since we last posted. today is a special day for us. father's day and our 1st anniversary all packed into the same day this year! tracee and i had a wonderful chance to just relax and sort of unwind from all we have been dealing with. after all, gavin will be 11 weeks old tomorrow. he truly is a miracle and we can't lose sight of that. we still have to be faithful and remember to faithfully pray for gavin's lungs. they are bad. i mean, i guess it really gets put in perspective when they categorize his lungs as some of the worst lungs they have ever seen in the NICU. even though he has been moving in the right direction we have to remember that we still have a long way to go. he has been regressing a bit on CPAP and his oxygen requirements have been going up. i guess it's human nature to sort of ease up and relax and get to a point where you become content in your settings and adapt to your surroundings. but...we can't let up - we still have another 5-6 weeks to go and there is a lot of improvements that gavin needs to make before we can bring him home. it aches after time. we see babies come and go and while there is so much to celebrate there is so much for us to continue to ask for from our loving Heavenly Father on this very special father's day. pray for spiritual strength and tenacity to keep the faith and to remain in prayer and in the Word - that we may continue to learn from God during this time.
tracee and i had a wonderful time of celebration at dinner tonight for our multiple occasion celebration. she looked amazing and i am so thankful for her. she is the most amazing mom - i can't wait until she can display her skills full time! i am especially grateful to be a father and the wonderful life-long responsibility that comes with that. i have a son and that puts a huge smile on my face. a very happy father's day to all of you father's out there who read our blog - your position in the home and in your kids lives' is invaluable and integral to the family unit!
thank you thank you thank you to all who continue to support us in anonymous and known ways. we really couldn't press on and do this without you. we are looking ahead to the fact that we now have to move in about 5 weeks. not looking forward to it one bit, not gonna lie. in fact, i get tired just thinking about having to pack boxes and move. please pray for our move and a place for us to live. if any of you know of a home for rent (at a great price) or of someone who needs someone to occupy their home for some reason, please let us know as we are actively searching. we have some areas that we are looking to be within but, we trust God to provide and to show us the perfect place for us to end up. after all....this is all a part of His plan even though it's hard for us to process it all right now!
just a thought: if it is ever hard for you to think about praying for us or to understand what we may be going through just imagine what it would be like to be without your child for a couple of days. how about a week? how about 2 weeks? how about a month? how about 2 months? how about 11 weeks? how about 16 weeks? when it is all said and done, barring a true miracle of complete healing, we will have gone without our child for 4 months. that's crazy pespective guys. that's crazy perspective for me and i'm going through it!!!
so please lift us up in prayer...we need it.

jeramy

long awaited update

2010-06-11T13:37:00.000-07:00

sorry for the delay! things are crazy in our lives as usual. jeramy is back working at alliance financial resources which is the mortgage bank he worked for previously - providing financing for people refinance or purchase new homes. it's been a difficult industry for some time now but they have some exciting programs (some that other banks don't have) and he is working hard to build up his realtor partners and client base again. if you are in the market to buy or refinance or have a friend etc. - let us know and you can help support us in that way!
ok, now that we got that out of the way - gavin has been receiving steroids for a couple of days now to get him off of the ventilator for good! he is now 3 pounds 11 ounces and steadily approaching 4 pounds. just to give you some perspective, he reached 2 pounds on 5/14! we are so proud of how gavin has been doing and it becomes more and more exciting to go and spend time with him each and every day. tracee spends a majority of her day with him and really knows all of the ins and out of who he is. we love that she gets to do that because no one knows him better! he has been in an open crib for a little bit now and has been doing an awesome job of keeping his temperature. he loves his big boy bed! please be in prayer that gavin will continue to ween on his oxygen needs and that he will continue to grow and develop. he received another head ultrasound earlier this week and everything looked the same as the last one. he also received another eye exam and there are still no signs of abnormalities with ROP and his blood vessels still haven't connected to the back of his head. pray that all of that continues to go well!
on another note - when it rains it pours. having a child in the NICU alone is enough to stress you out of your mind. well, for us, we just found out that we probably will have to be out of our place and move by august 1st. hmm...i think gavin is supposed to come home around the middle to end of july...what great timing!! not really. sense the sarcasm in my writing - we are so stressed about where we will go and what we will do - we just started thinking about that as of today. it's sad for us as we just planned/prepared/ and finished gavin's room and now he won't get to enjoy it. we spent time and money putting that together for gavin and at this point it's all for not. i've got to say that we are being pulled through the most difficult time in our lives. we are just about ready to celebrate our 1st year of marriage on june 20th and we have seen and experienced things that most couples might never see in their first 20 years of marriage, let alone life. we tend to wonder quite a bit these days. as i mentioned earlier, gavin alone in the NICU is enough - but apparently we have other things to continue to go through. with the loss of tracee's income due to short term disability (they don't pay her for that) and the ups and downs of the commission world of mortgage things appear pretty uncertain. it's hard for us to make plans when we don't really have the confidence right now to know what we are doing. but...we do know that with God, sometimes things aren't always what they seem. we have to place our trust in that right now and trust in Him to make a way. we are so drained on every level: financially, spiritually, emotionally, physically - that's just being real. but...we will not lose hope. we will continue to act, as best we can, in the face of uncertainty.
we are so thrilled with gavin and his special life. he is our miracle and one of the most amazing blessing we have ever received. pray for us friends and followers. we're having a difficult time with the stresses of this life right now but trust that things are seasonl and for a time. we look forward to sharing many additional blessings with you in the future, we just need to encounter them!!!

nursery - part 1

2010-06-03T21:18:00.001-07:00

jeramy and i originally painted the nursery green (safari green). once gavin came into this world though, the color of his room didn't look right. it didn't seem to fit him. we wanted to do something classic and simple instead. this is obviously a big step for us in beginning to prepare for gavin coming home one day. it was really hard for us to get to the point where we felt confident about his progress. the doctors, especially during the first month and a half, never mentioned anything about him coming home one day. i know that things can change at any moment and when gavin was in such critical condition, the last thing they wanted to do was give us false hope. however, we now feel so confident that he will come home with us one day. when?? well, that we don't know yet. we thank God every day for the progress that gavin is making and we know that without Him, none of this would be possible. it is with great joy and anticipation that we now begin the early stages of getting our house ready for our little boy.

we decided to go with blue on the top. the color is called "crystal waters"...it's absolutely precious. the bottom is an antique white and is called "ivory mist". my brother in law ryan, who is quite possibly one of the handiest men i have ever met, put up a wooden paneling as well. it looks exactly as i wanted. what do you think??

i will keep you all posted as things progress. next step.......furniture!

3 pounds!

2010-06-01T18:38:00.001-07:00

that's right!! gavin officially weighs 3 pounds today. they gave him another dose of lasics this afternoon while i was there because he does look a little puffy. one of the main reasons they give him lasics is to help with the fluid in his lungs. the lasics will help rid his body of any extra fluids. tentatively, they plan on giving him lasics (one dose) every few days. i say "tentatively" because, as you are all aware by now, things are very subject to change every day in the nicu. he is still stable on the ventilator, which is such a great sign since he has been off the steroids for quite sometime now.

their "plan" for gavin is to get him on to c pap in the next two weeks. their hope, and ours, is that once they get him there, that he will stay extubated and continue to make progress toward nasal canula (he can go home on nasal canula). because gavin is still requiring a moderate amount of oxygen on the ventilator, they may decide to do a short, two-day burst of steroids (our fourth round) right before they extubate him. obviously, our hope is that God intervenes for gavin and that he can show the doctors that he has enough strength to withstand the change and for his lungs to have the strength they need to breathe while on c pap. please pray along with us for that...

we started swaddle-holding gavin this week (i call it holding him like a "real" baby...ha ha). it is so different than kangarooing with him. the connection is so much better since we can see his face and he can "see" ours. here is a picture of jeramy holding gavin two nights ago....just precious!

the nurses all say how big he is getting, whenever they are off for a period of time, they come back and ask things like, "did that baby eat gavin?" we love his nurses. they are the best. every person in that nicu is the best. they save his life every day. how do you even begin to thank someone for that?

jeramy and i are doing well...i still cry every day (which is totally normal as a nicu mom). lately, i have had some happy tears, which is a nice change of pace. jeramy went back to work at his previous company, still working as a mortgage broker. our schedule is a little different now. i go to the hospital around noon and do his cares and sometimes hold him. i am usually there until around 4:00 and then i head home to start on dinner. jeramy gets off work around 6:30, we eat dinner and then head to the hospital for his cares at 8:00. we usually get home anywhere between 10 and 10:30. it usually makes for a pretty long day but it's definitely worth it.

as always, we thank you tremendously for your prayers, your love and support.

"for I am the Lord, your God, who takes hold of your right hand and says to you...do not fear; I will help you."
Isaiah 41:13

a little bit of everything

2010-05-27T20:22:00.001-07:00

gavin finished his third round of steroids twelve days ago and he has pretty much been able to maintain his ventilator settings. they have been able to ween some of his settings on the ventilator and our hope as that with each day, he can put on more weight and move closer and closer to being on c pap. he is still tolerating his feeds, getting 27 ml every 3 hours. it takes him an hour and a half to eat all of that so he basically just eats all day. no wonder he is growing! he now weighs 2 lbs. 11 ounces. in addition to tolerating his feeds, they stopped his morphine, which he was only getting once every 24 hours. so now, he only has his e.t. tube and his feeding tube. there are no iv's, no picc lines...NOTHING in his little body. we love that. they are drawing occasional blood gases so he does get pricked every now and then but not nearly as often as he was before!

gavin is so alert. when we talk to him, he looks our direction and will open his eyes. we love that. it definitely makes us feel more connected. the eye doctor came in to look at his eyes since premature babies' retinas aren't attached. he checked to see if the blood vessels are making their way toward the eye. the vessels haven't reached yet, but as of his first check, it doesn't appear that anything is abnormal. the eye doctor will check him every 2 weeks to see how the vessels are progressing and to check for abnormalities.

another step we have coming up will be moving gavin to an open crib from his incubator. there are a variety of things that the doctors like to see happen before this occurs. they like the babies to be about 1800 grams (gavin is about 1200), be able to regulate their body temperature (which gavin is pretty much doing...), and they prefer that they are off of the ventilator. we obviously don't want to push any of these steps with gavin since he is progressing so well. they are beginning to pull back the blanket on top of his incubator so that gavin can begin to adjust to day/night. this is super exciting to us....steps forward indeed! another reason that we don't want to push him into an open crib too soon (not that it's up to us anyway :-) is that gavin is still very sensitive to noise and when he is outside of the incubator/has the cover off (which helps muffle sound), he tends to de-sat and require more support. the more mature he gets, the better that will be.

we are extremely pleased with gavin's overall health. he is getting so big!! he still is occasionally having his breathing episodes (bronchial spasms) where he needs to be bagged. those are extremely scary for us. also, he extubated himself the other night 2 or 3 times. please pray that he keeps his tube in and that his lungs continue to heal and get stronger and stronger, which will help him with the bradys and the spasms.

thank you so much for all of your prayers and support, as always. i cannot stress enough how blessed we feel...

Great is His FAITHFULNESS!

a picture of perfection

2010-05-17T22:16:00.000-07:00

here is a recent picture of gavin...wide awake! some of you have seen it but we wanted to make sure that all of our faithful followers got to see him!

is it just me, or is he perfect? :)

music to my ears

2010-05-17T20:08:00.010-07:00

i love music and i love how God uses it to speak to me. it's crazy how i can hear a song numerous times and never really have it resinate with me until i face some type of momentous occasion, whether joyous or painful. obviously, in this time in my life, it's the painful moments that have me looking closely at the lyrics in a song. i remember hearing this song on my way to the hospital one morning last week. as i was driving down the 101, i had a beautiful view of the mountains and desert and i was thinking about just how big everything that God made really is. i have to be honest that i found myself frustrated. why was it that my God, who is so big and has created the heavens and earth, still hasn't "stepped in and saved the day"? i know that it's not because He can't. if that was the case, i wouldn't be frustrated. i'm frustrated because i KNOW that He can. i find myself frequently crying out to Him, "What are You waiting for?!". i don't have the answer to that....i don't think anyone does. but i think it's okay to be frustrated and to voice those frustrations to Christ. lately, i'm finding that transparency with God is a good thing...something i've never really experienced with Him before. and at the end of each day, even when it's "still raining", i CHOOSE to praise Him in this storm. please read through the lyrics (even if you've heard the song a hundred times). i think it is the most honest plea with Christ that still has a man bowing at the feet of Jesus amidst his misunderstanding.

"Praise You In This Storm"

i was sure by now

God You would have reached down

and wiped our tears away

stepped in and saved the day

but once again, i say "Amen", and it's still raining

as the thunder rolls

i barely hear Your whisper through the rain

"I'm with you"

and as Your mercy falls

i raise my hands and praise the God who gives

and takes away

and i'll praise You in this storm

and i will lift my hands

for You are who You are

no matter where i am

and every tear i've cried

You hold in Your hand

You never left my side

and though my heart is torn

i will praise You in this storm

i remember when

i stumbled in the wind

You heard my cry to You

and You raised me up again

my strength is almost gone

how can i carry on

if i can't find You

but as the thunder rolls

i barely hear You whisper through the rain

"I'm with you"

and as Your mercy falls

i raise my hands and praise the God who gives

and takes away

i lift my eyes unto the hills

where does my help come from?

my help comes from the Lord

the Maker of Heaven and Earth

days when my strength almost feels gone, just like the song says, He gives me just enough to get through it. i believe He speaks in ways that i'll understand. lately, for me, it's been through music. for those of you who may have never heard this song before, i added it to the playlist on the blog. love you all!

feed me! feed me!

2010-05-17T10:47:00.000-07:00

let me start with some good news: gavin loves his food! i realized since we wrote last that he was just about 900 grams. as of this morning he has broken through the 1 kilogram milestone and is now sitting at 2 pounds 4 ounces! that makes all of us so happy!! he continues to tolerate his feeds and he is now up to 22 ml's every 3 hours spread out over a 1.5 hour feed. so...he basically is eating all the time. he continue to poop and pee very regularly and that is AWESOME for these micro preemies. he has been averaging about an ounce a day over the past 3 days and that is such a thrill for mommy and daddy.
he continues to have some bouts with the bradycardia's we mentioned last time and there is no way to sugar coat those, they are darn scary. yesterday he had one just after we were helping do his cares about 2:30pm and it just came out of nowhere. all of a sudden there were 5 people bedside and my folks and tracee and i were just watching and praying as they brought him back. it is so tough for us in those moments but if you were to look at him afterwards, you would never be able to tell he just had a major scare! he is always wide awake and looking around - probably thinking "what are you guys all doing staring at me? i'm fine." you give us all a run for our money gavin!!
he continues to get his antibiotic (day 4) every 8 hours to fight the infection in his body and for tracee and i we sense that he is still sick. they had to move his IV from his head to his arm as the catheter wouldn't flush any longer; it had become kinked. they increased his pressure settings on the ventilator this morning because his CO2 levels were a bit elevated and the continue to work with gavin's lungs.
once again we update you all and ask that you continue to pray for his LUNGS. he is now 4 days off of the steroid and we PRAY that he can continue to maintain the levels he is at so they can grow him on the vent and get him bigger and stronger in preparation for CPAP down the road.
yesterday tracee and i sat in church and listened to a wonderful sermon on abiding in God. that word abide can also be translated as remain. it brings comfort to both of us to know that God remains in us at all times and we have to make a conscious effort to remember to remain in Him. what a faith building exercise we continue to go through!
a dear friend of mine gave me a book called The Red Sea Rules: the same God who led you in will lead you out by robert j. morgan. for those of you who don't know the leadings up to the point where moses parted the red sea, and the israelites walked through to safety on the other side, it was looking pretty bleak for them. the egyptians has allowed their israelite slaves to go and, led by moses, they sought out the promised land with God's direction. a long story short, they ended up encamped next to the sea with mountains surrounding them on either side, the sea in front of them and the egyptians pursuing them from behind. God led them to this place! well...we all know the miracle that took place and the sea was parted and the egyptians in their pursuit were swallowed up by the sea just as the israelites all reached safety on the other side. the impossible way of escape was made possible.
in the next to last chapter of this book, it talks about faith building. "Lord, increase our faith. Lord, I believe; help Thou mine unbelief." God grows faith in us, just as he is growing gavin's little body now. how? the book states that like any good teacher, He bestows truth, then devises tests to review and reinforce that truth, to transfer and translate it into lasting, life-changing experiences. it's like He is the coach and we are the players. we take His Word in scripture and use them as the plays and the rules and then we practice and scrimmage and re-review, etc. in this process we go from being good players to skilled pros. little faith grows into great faith.
i am not saying i have this all down! not at all! the thought crossed my mind yesterday as i sat in church: "why can't i just trust more?" i doubt all the time!! but God's grace carries us through and we continue to practice some more.
our concerns for today and over the next couple of days will be his lungs and how they will have to support him with his settings. continue on with us as we trust God for His timing and His healing hand upon gavin's body. guys, i cannot begin to tell you how beautiful he is! what an amazing kid. we long for the day to bring him home. thank you for your help in sustaining us in our weaknesses and our frustrations. please continue to reach out to us and support us as you feel led - we feel so good to know that you are there. THANK YOU!

jeramy

bradycardia

2010-05-13T09:45:00.000-07:00

well...we continue to ride the rollercoaster. up and down and around and around. that just seems to be the typical stint in the NICU for a baby like gavin and for being as young and premature and sick as he has been. there are a lot of things to be very thankful for though. he is doing phenomenally well on his feeds and is up to 20ml's of food every 3 hours and has now gone to 26 calorie which is a fortified feed. the doctor explained to tracee yesterday that the equivalent of what he is getting would be like me ingesting 15,000 calories a day! his little body is clearly needing it as he did drop 10 grams overnight so he sits just under 900 grams.
please pray, pray, pray for his lungs still!! he has had what they call brady's over the past 3 days which are due to some bronchio spasms occuring where his airways just shut down and he needs to be bagged to inflate his chest and get him back on track. this is a very scary thing for us and i'm sure for him as well. please pray for our peace as we continue to trust in God's healing for gavin and for his lungs and freedom from these episodes.
gavin is scheduled to get some blood today and then have his pic line taken out later on. he received his last dose of the steroid this morning and we PRAY that this will be enough to get him over the hump!! he is such a sweet boy and already has an amazing personality and a drive to live and pull through. we get so tired of having to go through this over and over again - we don't want to hear talk of any more steroids!
please stand with us in these prayer requests. we know that there is a lot of power in prayer!

jeramy

860 grams

2010-05-11T10:07:00.001-07:00

gavin weighs 1.89597545 pounds today - at least that's what google told me when i converted how many grams he is today. i guess gavin decided to extubate himself last night. apparently this is not much of a shock as these little guys begin to get older and more aware of their surroundings. the neonatologist was right there to re-intubate him and all is good. gavin continues to remain stable on his current settings on the coventional ventilator and that is good as we really need him to grow! they have continued to increase his feeds each day and he is now getting 15.5 ml's of fortified breast milk which is awesome! if you remember back from many posts ago, he was getting 3ml's or so every 3 hours. tolerating feeds in the NICU is one of the biggest hurdles and so far, God's blessings, gavin has continued to increase on his feeds. he is almost up to full feeds and will probably be there tonight or tomorrow.
there are only 7 babies in the NICU right now as a lot of gavin's mates have gone home. he still has a couple of friends who are in there with him that will be there for some time, but gavin still remains the smallest and most critical baby in the NICU. but....he is coming along! it's important for us to remember that God delivers in His own unique way in His own timing. my little finite brain continues to think that i know what the best plan of attack should be but i seem to get over ridden quite a bit! at the end of the day it continues to come back to trusting. we trust that God has a plan and will continue to allow it to be revealed in His timing.
nevertheless we continue to petition for our prayer requests and for what we as well as the doctors want to see for him!
our request for today is that you would continue to pray for protection over gavin's body and organs. please continue to pray for the right nurses to be with him and that they would be alert and attentive to his needs. the NICU, just like any other business, tends to relax when things slow down. it's such a crazy phenomenon but i see it happen in business all the time and it's not something we want to experience in the nicu. we don't want the nurses to relax when paying attention to gavin as his signs are so important for his life right now. please pray for his GROWTH!! he will be coming off of his steroid either today or tomorrow and it is so important for him to be able to maintain and to sustain and the more he grows, the bigger and stronger he becomes. it isn't good for babies to remain on the ventilators for long periods of time, but for now he is ok. however, please pray that his lungs would continue to improve and strengthen so we can get him back to c pap and then eventually even lower support than that.
i try to be as specific as i can for you all so that you know what to pray for and what is going on exactly. this is no time to be vague!
finally, thank you to all of you who have continued to support gavin and both tracee and me! the bracelets have been a huge success to help remind people to think of and pray for gavin. the benefit account is up and running and we thank you for donating and helping as you feel called! we could not do this without you all - nor would we want to!
i continue to be humbled when i see so many people join forces and come together for something such as this. thank you for caring so much for us and for gavin's life. he is a beatiful little boy and i can't wait for you all to be able to see more of that and partake in that a little bit more. in the meantime, you know how you can help us!! PRAY! PRAY! PRAY!
"delight yourself in the LORD and he will give you the desires of your heart." Psalm 37:4

jeramy

newsflash: gavin is a miracle

2010-05-06T13:39:00.000-07:00

yesterday they adjusted gavin's birth age to 24.4 weeks as to what they think he actually was when born on april 5th. i think they probably waited until 30 days of life to make the adjustment so we could feel a little better about ourselves thinking we had given birth to a 26.6 week old baby boy. gavin continues to show amazing signs based on this new revelation.
he is teetering on the 2 pound mark between yesterday and today. he continues to tolerate his feeds and is up to about 9 ml's of food every 3 hours. i'm not sure about you but i think i'd be pretty full after a big meal like that. with the help of his 3rd round of steroids he is improving on his oxygen needs and on his ventilator settings. he will continue to get weened on steroids for another week as to not make the mistake of bringing him off too soon. as we always mention there are always risks to the steroids and to the potential effects of neurological issues and IQ point losses. please pray that his brain and body will continue to be protected!
he received his 30 day head ultrasound yesterday and the prelim report showed a grade 1 brain bleed. these ultrasounds are graded on a scale of 0 to 4 with zero being nothing and 4 being the worst. a 1 revealed that he shows signs of some veins in the brain that, through stress, have bled out a bit. we are told and reassured that this is very common in preemies and that a lot of times these just absorb into the body with no long term effects. you know how to pray people! pray that there would be no long term effects and that his head would grow at a normal rate. he gets a head circumference done every week and his head should grow by a .5cm a week. so far, he is perfectly normal on his head growth and his head looks perfect to us. they will continue to measure to make sure that it doesn't grow bigger than it should as that would be an alarm to the fact that there is blood on the brain. we trust you Lord for healing!
it looks like tracee will get a chance to hold him on mommy's day this sunday. please pray that this will happen and all will go well and that it will be a perfect and special day for us.
these days, even when he begins to do "well" i have a hard time feeling peaceful about that. i have been dealing with this stuff for over 7 weeks now (3 before tracee gave birth and was on bed rest and then hospital) and it appears we have another 12 weeks or so in the NICU. thank you for continuing to lift us up when there feels like there is nothing left in the tank.
really dwell on the understanding that gavin is a true miracle. when i look at him he really and truly looks perfect - just micro. i know this economy is difficult and our governments are in disarray and our finances have been hit hard and the sky is falling and on and on...but gavin creates the need to stop and dwell and really think about what is important. have you done that lately? have you done that today? my grandparents always counseled me about feelings. every single one of the "worldly" things i just mentioned above will cause us to "feel" something about them. my grandparents used to say "YOU make me so mad isn't an appropriate statement. nobody can make you feel anything, it's rather a choice you have to make." rather, don't give the power to somebody else or to the world or to that circumstance. own your feelings. you can say "i feel mad when..." or "i feel sad when..." and i think i bring all of this up because gavin serves as a barometer for what feelings are really appropriate and what is actually really important. gavin is teaching us how to live better lives and how to be better husbands and wives and boyfriends and girlfriends and sisters and brothers and employees and employers, and of course, better mommy's and daddy's. get your bracelet and allow that to serve as that reminder of what order you have your priorities lined up in this life.
thank you faithful followers!
PS - please post from where you all are following from across this country and the world so we can be encouraged by that. :-)

jeramy

go gavin go

2010-05-04T22:11:00.000-07:00

hi there!
my mother in law decided that it would be a good idea to make up these bracelets in honor of our son gavin and his fight as he progresses in the NICU.
just before gavin's arrival, we were told about Cord Blood Registry and what they do - especially for babies who are high risk. we chose to have his cord blood and cord tissue stored with the largest facility in the world that is located in tucson, arizona. one of the wonderful things they do is offer a gift registry to expectant parents who decide to have their child's cord blood stored that people can donate to directly. well, we ran into a glitch. CBR allows this registry to be open and available to people up until their child is born. since gavin came so quickly and 3.5 months before he was due, we just weren't prepared. we had no way to allow people to donate as it was cut off the day he was born. no matter what, we are excited to know that we were able to store 126 million cells from a 1 pound 3 ounce baby. the average collection is 500 million from a full term 7/8 pound baby - so we did great! of course, we pray that we never have to use those cells but they have been proven to be effective in dealing with over 70 different potential complications that could arise.
rather than do a car wash to raise money for his upcoming medical bills, CBR and any unforeseen surgeries, etc., we wanted to offer these cool bracelets as a way for people to donate to him and to then wear it as a reminder to think and pray for him.
As you can see from the pictures, it says “Go Gavin Go.” I filled it in with a black pen – so it doesn’t actually stand out like that, so you won’t be drawing crazy attention to your wrist! On the other side it has a scripture reference: Jer. 29:11.

we have them in 2 sizes: adult and kids/women’s.
we’d like to offer them up in exchange for donations. feel free to grab a bracelet and donate directly with tracee and i or you can send an email to mknikolin@cox.net and karen can give you instructions on how to send a self addressed envelope to receive your bracelet(s). If you feel more comfortable, we have established an account at Wells Fargo on behalf of gavin. the name of the account is the "Gavin Williams Benefit Donation Account" and can be referenced at any Wells Fargo branch and you can donate directly and privately. if you go that route and need to receive a bracelet or two, both tracee and i usually have some on us.
please let us know if you would like to share with us in this long journey!
also, please don’t feel obligated whatsoever! If you just want a bracelet to support us that way, that is fine too. we want people to wear them in support and to look down and to remember to pray for gavin and the plan for his life. speaking of plans..."for I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
we trust this for gavin's life!
if any of this doesn't make any sense or you have any questions about this, please get in touch with us and let us know! go gavin go!!

just another manic monday

2010-05-03T11:06:00.000-07:00

gavin had to me moved back to the oscillator last night about 10pm. they were having to increase his pressures to a point where it was becoming unsafe for his lungs. imagine a balloon that is inflated over and over and a little bit bigger each time - it looses some of it's elasticity. that's what they don't want to have happen with gavin's lungs. for us we have noticed a pattern. he started on the vent on low settings and then slowly increased on his settings to the point of needing the oscillator. now that he's on the oscillator, their goal is to keep him on low settings and keep him stable so they can continue to grow him, but our fear and concern is that he will need to continue to go up on his requirements on the oscillator. please God, hear our prayers and the prayers of others to spare us from going down this road again. we have already been here and they were some of the scariest days of our lives.
i am so tired. i know that tracee is worn down to the bone. i'm not much of a surfer but i always wanted to be. i'm looking to catch that really great wave and then ride it for a bit - have it carry me to shore - carry me to safety. i'm trying not to let my heart be troubled. i'm trying to cling to God's promises and to be a good leader for my family. i continue to cry out for my son.
as i visited him this morning he was just all over the place on his settings. the nurse practitioner mumbled about the idea of going back on steroids again. they are checking his heart by doing an echo to check on his PDA valve that is open in all preemie babies just to see if that is playing any interference into things with his lungs. if he has to be on the oscillator then we are fine with that - but we need him to be stable there!!
Please: this is a call to action, once again, to pray for gavin and for his stability and for ours as well. he is 4 weeks old today and tomorrow he will be (on paper) 31 weeks.
i would be lying to you all if i said i didn't hate this. time is an interesting thing. in some regards time heals things, it grows things, it improves things. in other regards, it erodes things, it evaporates things, it prolongs things, it batters things. tracee and i know that gavin's time in the NICU is long. we have come to understand that and embrace it. but to continue to go through anguishing cycles over and over are the places in time that get to be too much. i want off this rollercoaster, but the name of this ride is "gavin's life" and so there's no way i'm getting off.
i choose to dig deep and to focus on what i know to be true but i certainly don't understand right now.

thanks for meeting me where i'm at right now.

Jeramy

this too shall pass: an update

2010-05-01T14:26:00.000-07:00

if you have been following the blog then you know about and have probably read our post about my night to the Suns game and how the reoccuring them for that day had been "this too shall pass." I had said in that post that with God there are no such thing as coincidences. we stand firm on that. this blog, and our journey with gavin continue to bring us stories of God's workings in our lives and just how things happen for a reason, even if in the midst we don't understand.
tracee came home the other day and said "do you remember that girl's tattoo from the Suns game? well, a friend of mine knows her - it's her good friend!" tracee proceeded to read me the email and this is what is said:

Hey Tracee,

I just wanted to write and say that I have been following your blog and keeping you and your family in my prayers. I was just catching up on the last couple of blogs and saw the craziest thing! That girl who your husband took a picture of her tattoo at the Suns game is a really good friend of mine and I was with her when she got that tattoo in December, small world. I told her about the blog and the picture and she was so happy that your husband saw this and felt some sort of peace from it. Her name is actually Nicole and she was a roommate of Mia in college. So, anyways your prayer circle just got bigger. I wish you and your family the best and will continue to pray for you all.

Love,

Nicole

we can't make this stuff up! you always hear people say things like "what a small world." it's not a small world. it's actually a very big world, but when you run in certain circles, or you believe in a God who ordains things and places people where they need to be when they need to be there, then you get things like this that happen.
i hope that you all find this as cool and encouraging as we have! gavin is 26 days old today and has taken a little step back on his progress but we trust and remain calm and know that these things will happen.
continue to pray for the strenght of his lungs and that he will tolerate his feedings as they attempt to get him up to "full feeds" over the next week or so. it's what he needs to really grow. oh yeah, also pray for him to sleep soundly as that deep sleep really helps him grow too.
may each and every one of you be blessed richly in your lives as you join with us in prayers and support for gavin and the williams family. thank you!

jeramy

a tiny glimpse

2010-04-28T16:50:00.001-07:00

yesterday was a big day. everything started out great. gavin was a doing really well when i got there in the morning. i knew in the back of my head that if he had good blood gases and remained stable on c pap, i would get to hold him at 2:00 during his touch time (this would be my first time holding him). everything seemed to be going well with all of his stuff, except his blood gas, where his carbon dioxide levels were a lot higher than the doctors wanted. i knew that another blood gas was coming just before 2:00 and i had such high hopes that he would stabilize. aside from the reason of wanting to hold him, i wanted him to stabilize because he seemed so much more comfortable when he was extubated. he was able to lay on his tummy and his side and they took him off of the majority of the sedatives he was on, which also told me that he was more comfortable. well, around 1:00, he began desatting rather quickly. we knew that this was a possibility since he came off the steroids the night before. they had him at 100% oxygen and he was still desatting. i knew instantly that his little body just became too tired to keep breathing all by himself. it all happened so fast and my emotions definitely got the best of me. surprisingly, holding him was the last thing on my mind...all i could think about was him needing to be intebated once again and how bad i felt for him. i was so proud of my little guy for pushing so hard for 3 days all by himself. everyone was shocked he made it that long too! one of the neonatologists and nurse practitioners reintubated him, but had a hard time getting the size 3 tube in because he was swollen from the suctioning that they were doing trying to keep him on c pap if they could. amidst trying to intubate him, they needed to bag him in order to give his lungs enough air. that is, by far, the hardest thing to watch as a parent. the doctor ended up intubating him with a 2.5 sized tube. we could all still hear gavin making little squeaks around the tube, so he knew that once the swelling went down, he would need to reintubate him with a size 3. they gave gavin some sedation to calm him during this process and he was now stabilized. our nurse practitioner told me that i could still hold him while he was intubated. i was ecstatic!! i immediately called jeramy to have him come down to the hospital so he could be there to share the moment with me.

they do what is called kangaroo care, where they place the baby directly on the mother's chest. it is really good for the baby and it is really good for the mom too :) they got me situated in the recliner and transferred him from his incubator to my chest. they tucked him right inside my shirt. at first, i was really nervous because of all of the cords he has attached to him, as well as the tube in his mouth. i didn't want to move anything. right when i felt him, though, all of those anxieties immediately went away. jeramy got there right at that time, which was perfect! lindsay and his nurse got everything taped down where it wouldn't move and got his sats back up (when micro preemies transfer from their incubators to their moms/dads it is quite the ordeal). after about 5 minutes, jeramy and i got to enjoy some alone time with our son. the lights were off, the curtain was pulled and we were able to get a couple short videos of our time spent with him. i knew that gavin was small...one pound 9 ounces isn't huge after all. but once i had him on my chest, he felt even smaller and more fragile than i could have ever imagined. it was the most amazing feeling ever. he did so good...he was super calm and was so still. however, his tube had quite a large leak in it though, because it was too small, and as the swelling went down, he began desatting rather quickly. after about 10 minutes of kangaroo care, the nurse and nurse practitioner came in and i knew instantly that our time was done. they called quickly for the doctor to come to his pod and the nurse practitioner began bagging him while he was on my chest. he wasn't getting enough air in his lungs from the tube, or the bag, so they moved him in a VERY quick and scary way from my chest to his bed. instantly, people were all around him. they continued bagging him until the doctor came and reintubated him with a size 3 tube. jeramy and i cried a lot in the hall of the NICU, after what was a very scary and emotional experience. watching things change as quickly as they did was terrifying. we decided that, once they got gavin situated and stable, we would head home. it was a very rough day, but i caught a tiny glimpse of what it will be like when i can hold him for longer periods of time. depending on how he is doing, we should be able to hold him for an hour, every other day or two. we can't wait...
oh...and look how tiny his little hand is. that should give you a pretty good idea just how tiny this little guy really is...

i got to the hospital today and heard that they had to reintubate him once again because his tube was too high. it truly is never ending and a little bit of my heart breaks each time i hear about things that happen to him. we trust these nurses and doctors so much with our son though and i am so thankful for each and every one of them. today, however, i hit a breaking point. maybe it was everything that happened yesterday or my lack of sleep last night from having continual, detailed nightmares about what happened yesterday that i just couldn't escape from...i don't know. but i needed to come home and sleep or at least try to sleep.

please pray for us. every day is a struggle. every day we cry. every day we feel like we reach a point where we can't do it anymore. thankfully, however, in the moments where we feel like we really can't do it anymore, God gives us just enough strength for one more day. so pray for strength....we need it.

leaps and bounds

2010-04-24T19:13:00.001-07:00

as you are all well aware, life in the nicu is all about living minute to minute. everything can and does change so fast. well, it appears to be doing just that...at least for now :)

gavin is the little mystery of the nicu! even though my doctors calculated my due date for july 6th, there has been a lot of debate about that date. the perinatologists, as well as the staff in the nicu believe that my date was more around the 18th. based on that, gavin was actually born at a little more than 24 weeks gestation. this also corresponds with how he looked when he was born based on his size, his eyes, his weight, his lung development, etc. at this point, no one knows, but they don't really use his "gestational age" in the nicu because they do not believe it is accurate. this makes him even more of a miracle!

on tuesday, gavin opened his eyes for the first time!!! i was so thrilled that i got to be there for that. it was so funny because at first he only opened his left one. his right one was still a little fused. by the end of the day, though, he was opening and closing both eyes! every time i see it, i feel more and more connected to him. the connection piece is so important to me because my head knows that i'm a mommy, but my heart doesn't yet...i can't explain how that feels exactly. there is nothing in my house at all, except an empty green room, that reminds me that i'm a mom. but i think i'm supposed to just "know" that i'm a mom. when i get in the car, there's no car seat, no crying. but i'm just supposed to "know" that i'm a mom. i carry my diaper bag to the hospital every day, but it just has my journal and a water bottle in it. but, again, i'm just supposed to "know" i'm a mom. the only place i go where i actually FEEL like a mom is right next to his bed. man, i can sit there all day. people always ask me if the days go by slow, or if i get bored. no way! see, all i can do to be a mom right now is to sit there. i don't know how to do anything else for him. if i'm lucky and if he's stable, i sometimes get to place my hand on him. if i'm really lucky, i get to help the nurse change his diaper or even wipe his little mouth. but that's it. so, i LIVE for those precious moments and i couldn't imagine being anywhere else. i wouldn't know how to be anywhere else. it's weird, because our house looks and feels the same it did before we got pregnant, yet we know that something has changed. we have a son now but do we really "have" him? no. we don't. amidst the uncertainty, i place all confidence in the Lord that, one day, we will have him and our house will feel different......i will feel different.....

jeramy and i knew from day one that a huge goal for gavin would be moving from the oscillator to the ventilator. since everything that had happened last saturday, we were told that this wouldn't probably be happening for some time. so, when the doctor came in yesterday and told me that he wants to look at moving gavin to the regular ventilator, i thought, "well, yeah...in due time that sounds like a plan to me too!" he stood there for awhile talking about gavin's sats to one of the nurse practitioners and i became increasingly interested in what they were talking about. i overheard him say, "go ahead and get the respiratory therapists and we'll make the switch". i stood up and said, "now? you're gonna switch him now??" i was in such a state of shock, i couldn't believe it. i called jeramy and he was in just as much shock as i was. we began praying and asking people to pray that his little lungs and body would be able to withstand the change and would be able to maintain proper oxygen levels. we didn't want to switch back to the oscillator (which was/is a possibility). the switch went so smoothly and he responded wonderfully!

today, we woke up and, as our everyday routine, we went to the hospital. as i was signing us in at the counter in the nicu, i looked into his pod and noticed something very different. since i am in that pod all day, every day, i notice any change whatsoever. today, i noticed a change. the ventilator was turned off. what a bummer. my heart sank immediately and the first thought that came to my head was, "man, they had to put him back on the oscillator". however, as i looked closer, i noticed that the oscillator was nowhere to be seen. my eyes focused in on this new machine...a machine i hadn't seen before. all of these thoughts happened so fast in my head and jeramy was already in his pod talking to his nurse. as i walked toward his room, the thought came to my mind..."c pap?" right as i thought it, i heard jeramy say, "he's on c pap!!" for those of you who are not familiar with that word, that means that he is not intubated anymore!!! i couldn't believe it. after all, it was just yesterday that they decided to switch him to a regular ventilator. as it turns out, they started the c pap last night around 10:00. it has been almost 24 hours and he is still holding his own on it. this means that gavin is doing a ton of the work right now. he is able to breathe on his own with a little assistance. he has this little mask on and he even gets to lay on his tummy! when he was intubated, they couldn't move him very much so this makes me so happy because i imagine that he is so much more comfortable! so, it got me thinking, "what is this ventilator still doing here by his bed??" well, as is common in the nicu (especially with micro-preemies), they oftentimes will switch babies to a new machine as a "trial" and usually have to go back to their old machines once or even more in order for their lungs to mature/develop more. so...there is this table with all of the medical equipment neccessary to re-intubate our child, if need be. it is laid out in such an organized fashion that terrifies me. i do not want him back on those machines. i do not want him intebated. there is nothing worse than seeing your child in what i can only imagine is a very overwhelming and scary state. also, when he is intubated, they have to give him more sedation. i hate that part too. my heart wants him to be off as many things possible, especially the things that can cause long term side effects. when we left the hospital this evening, they were keeping a very close eye on him and even turned the ventilator back on at one point, as it looked like they were going to reintubate him. but...he pulled through that little rough patch and i plead with you for your prayers...

please pray specifically for gavin that he can maintain on his own while on the sipap
please pray for his lungs. although he has made the switch from ventilator to ventilator over the past 2 days, his lungs are still the same that they were, he is just getting stronger so, right now, he has strength to take breaths. so, pray for continued strength.
as gavin comes off the second round of steroids, he will need even more strength and maintenance with his breathing and it becomes a bigger risk of him going back to the ventilators.
also, while he is on c pap and is not intebated, we can do kangaroo care, which means i can hold him. we aren't there yet as they want to see him stabilize on the c pap....but we're so close i can almost feel him. please pray he can maintain. i long so much to hold my little boy and i feel like i'm almost there......

God, when i was growing up, i knew you were big. but i didn't know HOW big You were. as i drive to and from the hospital, i cannot help but look at your creation...the intricacies, the magnitude, the beauty. i have NO DOUBT that You are bigger than this. You are bigger than medicine and You are capable of healing my son in a way that can ONLY be described as a miracle. shame on me for ever doubting you...as a friend told us on saturday, amidst our suffering, "one thing he knows to be true is that, no matter what, GOD IS GOOD....."

this too shall pass

2010-04-21T22:10:00.000-07:00

so things have been up and down. more down than up in this turbulent time of life with a child in the NICU, but God continues to sustain us. i try to remember to take each day, not even day by day anymore, but more 5 minutes at a time. in difficult times, life seems to be much more managable when you approach it in those increments. i love reading the posts on facebook and the continued commitment to pray for us and for gavin. one particular comment on tracee's page came from one of her teacher friends that i loved reading. she told us that she just kept having this reoccuring theme: this too shall pass.
it was so timely for tracee and i, and a fantastic reminder of the cyclical nature of life. there are peaks and valleys. there are extreme highs and devastating lows. for most of our marriage, we have experienced some real adversity. you might be thinking "most of their marriage? they haven't even been married that long!" and you are correct! we have experienced several hospital stays, a house move, a job change for me, financial difficulties and of course; an ongoing trauma with our first child...all in the past 10 months. counselors say that any one of these things can be huge stressors in life and we've had em all. So, due to the cyclical nature of life, we are anticipating that year 2 will be phenomenal!
ok, so as i was meditating sunday afternoon on what tracee and i have gone through over our short but never-a-dull-moment marriage, i came back to that wonderful reminder that this too shall pass.
i had tickets with some guys at work to go to the suns first playoff game on sunday night, so i made the determination that i should go and try and get some normalcy back. so i headed to the game. as we got settled in, i noticed that there was no one sitting in front of me. i didn't think much about it, other than i thought it was great that at a playoff game that should be completely sold out - no one was there to block my view. as the game went on and the suns struggled i started to people watch a bit. i happened to notice a girl 2 rows in front of me with a tattoo across her shoulders. it said something but i couldn't make it out as her hair was covering most of it. as the game progressed, i began to see that the first word said "this" and then that the last word became visible as "pass".
ok, i'm real intrigued now. i honestly don't think i could tell you much of what the 3rd quarter looked like as i attempted to decode the rest of this tattoo. i became pretty convinced as her hair would move from side to side that this girl's message to me said: this too shall pass. sure enough, it did. i couldn't believe it! of all the people who could sit 2 rows in front of me in a huge arena, this girl does. in a sold out game, nobody sat in front of me so that i could see this girl's back. at this point i was texting tracee to tell her what was happening, but i really wanted a good picture of the whole thing so i could show her and encourage her but her hair was in the way and had been the whole game. as i pulled my phone out to take the best picture i could, she reached her hand around her head and pulled her hair in front of her shoulder; out of the way. it was amazing. here it is...

God delivered a message to me using these 2 women. there is no such thing as a coincidence. God is good. He knew i needed to hear and see that. God may not speak audibly as in the Old Testament times, but He certainly spoke through these circumstances. i hope you find this as encouraging as we did!

jeramy

pushed to the edge

2010-04-18T14:18:00.001-07:00

let me start with the good news: tracee's headaches are much improved and she is slowly on a better path to recovery. she is still real tired and wiped out from much activity on her feet but that is to be expected. in fact, i think the only headaches she gets now are from crying. she had one of those yesterday.
we had a consult with the neonatologist and one of the nurse practitioners about what their plan of attack might be over the next 24-48 hours yesterday morning on the phone. they explained to us that they wanted to go over any questions we might have about gavin's lungs and what their plan of attack was going to be since, once it was time, they would need to act quickly if gavin's body was showing he needed additional support. let me stop right here and explain that because of just how poor and sick gavin's lungs are and have been, they wanted to give him a steroid to help improve function. gavin's urine output had decreased significantly and he had put on a lot of fluid weight which made him look puffy. his blood pressure was low and his heart rate was high. there was concern that he might be fighting an infection that was causing all of this (his cultures haven't shown to be growing anything)but they just couldn't tell.
After getting off of the phone with them, tracee and i spoke and understood that they may be calling us but we didn't expect a call anytime soon. we went to lay by the pool for a while. a few hours after our initial phone call with them, we got a call from the dr. that they wanted to go ahead and meet at 6:30 to go through everything with us because we had reached that time to go ahead and talk about giving the steroid. of course, tracee and i had been praying that we would never reach that point and that gavin's lungs would RESPOND! turns out that they didn't and so tracee and I got cleaned up and made our way to the NICU. when we got there his vitals weren't great and so we discussed the plan again. we agreed that the steroid was the best possible option for gavin but that it is very rare to be given in babies his age. normally babies that are 4 months old would get this type of boost. we were told he would be getting a very low dosage and that should help protect him against potential risks such as cerebral palsey and decreased IQ. they went ahead and administered the steroid about 7ish and we hung around for about 20 minutes to see how things would begin to go. the dr. explained to us that it would take several hours for it to begin to show signs of improvement and that if we didn't see any positive results we would address it again about 6 hours later. we cried. we prayed. we asked God to shine His face upon us and to show us His healing and goodness. one of the NNP's cried with tracee and i. she let down the side of his incubator and let us both kiss his little head. what a precious and unforgettable moment for us. we really like her. she has been taking such good care of gavin. her shift was over at 7pm but she didn't want to leave. i know that in that moment i certainly felt like Abraham going up to the alter; being asked to sacrifice his one and only son.
we had plans to meet the goble's for dinner and decided to do so because we were teetering on the edge as it was and needed their wisdom and Godly encouragement. as we sat at dinner and cried and shared our emotions; our prayers and hopes were with gavin. tracee felt responsible as if this is her fault he came so early. i felt like everytime we cried out to God for His healing touch on our boy, it was to no avail. our ultimate fear is to lose our son and we both had to acknowledge that and confess that to God out loud. He already knew in our hearts what we were feeling but i know for me i was so afraid to go there because it just seems like that was/is going to be the outcome. we stopped by the goble home after dinner to grab some pillows and clothes to wear as we stayed in a room they had available in the NICU so we could be close to gavin. when we arrived, his night nurse said that he was doing pretty well (considering) and that he had begun to pee which was good. both tracee and i checked on him and i talked to the NNP and she felt like the steroids were working and that he was showing signs of improvement.
we headed to bed - it felt good to be about 200 feet away from gavin at bedtime instead of 30 miles. we prayed as we drifted off to sleep. about 8am this morning we got up to check on him. he had a pretty good night! he pee'd a ton! in fact, on 2 separate occasions, he pee'd so much that he soaked through is diaper and they had to change out all of his bedding! what that really meant was that his blood pressure had improved, his kidneys were working again and his heart rate and saturation rates were much improved. his chest xray from this morning looked better than yesterday but still hazy. this was the move from God we were looking for!
gavin began to do some of the work again and i know that the whole staff was relieved. gavin is the sickest baby in the NICU right now: those were the words of the dr. yesterday afternoon.
we have been pushed to the edge; camped by the red sea with no where to go, looking for God to make a way. He has led us to this place, we PLEAD for a way of escape.
today we are trying to catch up on some rest back at home and hoping that the phone doesn't ring today. they are really going to work at "cautiously being aggressive" for gavin today. pray that they would be able to wean down his oxygen further and that his vitals will allow. we need his little lungs to start working!!!
we can't do this on our own and so we rejoice in the support we get and knowing that you all follow our updates and can get a glimpse of what we are going through. this is by far the hardest thing we have ever had to experience and endure.

jeramy

TGIF?

2010-04-16T15:01:00.001-07:00

TGIF! "thank God it's friday" or "thank goodness it's friday" right? i'm not leaning that way today. while that may be the acronym and they've developed a high calorie/high fat restaurant concept around it, it's not what the Williams family is feeling today. gavin has been having a rough couple of days and i got a call from the NICU this afternoon that on his blood tests it looked like he was showing some sort of infection brewing so they have now begun him on an antibiotic to fight that and hopefully calm him down. he has become less resistant to touches and moves of late and that can certainly be due to the fact that the little guy doesn't feel well. in order to keep him more comfortable they have put him on a sedative drip rather than giving it to him every few hours. his lungs continue to be a little more hazy than yesterday and his heart rate remains slightly elevated - probably stress and rightfully so! we are discouraged by this news and as the Psalmist wrote in Psalm 67 "may Your face shine upon us", we are wondering why it seems God has rather been doing the opposite. feelings are delicate. we all have them and they all play into our decision making on some level or another. they can be so good and yet so bad in some cases. i'm just a man, trying to take the best possible care of his family and wanting to do whatever i can to take the pain away from my wife and my little boy and yet there isn't anything i can do.
tracee just got dropped off at the ER at Shea as she is going to have a blood patch procedure done by an anesthesiologist (her doctor's husband) at about 4:30 to try and solve the issue with her horrible headaches. ever since the spinal she was given to perform the C section, she has dealt with major headaches that really leave her incompacitated. the goal is to draw some of her own blood and reinject it into the spinal column and sort of block the leak that is occuring. we are told that this should provide instant relief for her and so we are praying for wisdom for the doctors and surgeons and that it will be a quick and easy procedure and deliver the results we are looking for. my heart goes out to tracee as she wants so desperately to be back to 100% and has been operating at about 30%.
somewhere in the mix i try and work but i tend to get caught up with doing things like this and doing the best i can to manage information that is given to me by doctors, nurses, specialists, etc and then pass it along to our faithful followers and family.
today has been pretty crappy and frustrating to have things happen to tracee and baby. it really is hard at times because most of these things are like the fraction of a percent of a percent deal - and we get hit with them! maybe we should play the lottery?
pray for a continued calm in the storm for us and for our spirits as they have been stepped on so many times along the way. pray for tracee's procedure to go perfect and FIX the problems and the gavin will RESPOND WONDERFULLY to the treatments.
finally, to all of you parents: hug your kids. love on them. tell them that you love them and that you are thankful for them. we can't hold gavin and we can't hug him. we get to tell him through some plexiglass that we love him and are thankful for him but it's just not the same is it? you never know what you have until you don't have it. so...when your kid is crying or acting up or running when they shouldn't - just stop and be thankful for their ability to do so. thank God for those good and perfect gifts.

jeramy

this hurts

2010-04-15T11:23:00.000-07:00

there's this video that is out on Youtube that depicts this guy who has an encounter with God and God is slowly chipping away at him with a hammer and chisel. In fact, I think the video is called "God's Chisel." when God starts hammering away, the guy reacts in pain. i'm that guy right now. this all really hurts. my son, gavin, isn't doing as well this morning. just when we think he is beginning to turn the corner and do better, he takes a step back. i know that i say over and over again that his lungs are immature but they are! he is in this place now with the dr's and the nursing staff that they aren't sure if his heart is contributing to his lungs or if his lungs are contributing to his heart, etc. he has a valve that is open (all babies do) that is pushing blood into his lungs, perhaps, and they really want to see if that will close on it's own. babies born at a normal gestation have that valve naturally close. oh God have mercy and grace upon our family and little gavin!
please pray specifically that he would digest his food as the plan is to continue to increase his feedings even though he isn't getting it all the way through. please pray for this PDA valve to close if it is open and that his heart and lungs would stabalize and relax. please pray that there would be NO lung or heart damage as our little kiddo is working so hard. i feel a little disconnected today. i hate it. i continue to think about Scripture and about God's unfailing love and i turn to that now. please pray for tracee and i and our marriage.
"i am laid low in the dust, preserve my life according to your word." Psalm 119:25. this verse sums up how i'm feeling as i am face down on the ground pleading with God for healing and that he would preserve gavin's life according to His word.

jeramy

f.e.a.r.

2010-04-14T14:49:00.000-07:00

i've been told that a good acronym for FEAR is false expectations about reality. i woke up this morning feeling fearful about gavin's future and what kind of progress he is really making. tracee and i prayed on the way to the hospital this morning as our normal routine is for us to carpool and drop her off and then for me to head on to work from there. the Bible is so clear that there is a supernatural and spiritual world/realm that is going on all around us that so often we aren't aware of. from time to time i find myself getting attacked with anxieties and fears and try hard to quickly pull my mind out of those dark places. truth be told, gavin is showing signs of doing well from the reports we get from the dr's and nurses. that truth, sometimes, has a difficult time reaching my heart and mind. he has sick lungs still and the feedings that they have re-introduced into his body are slowly making their way through his bowels but he really needs to poop! as a daddy, and more importantly as a statistics guy, i get obsessed by the numbers and the stats. this is why i love my wife so much because she is the balance i need; to be with gavin at times like this when i get unsure. i got a message from a friend this morning saying "know that you guys are being prayed for, even at times when you can't bring yourself to pray. we have faith and hope on gavin's behalf, even when you guys feel despair. praying for peace for you today."
i was so encouraged by this. i needed this. so, i thank you all for doing this for us and for gavin, behind the scenes when we are unaware. i told tracee that i had heard that it takes about 60 days or so to form a new habit. we know that gavin will be in NICU probably up until his original due date of July 6th. that means that he will spend the first 3 months of his life away from us, but forcing us to pray and deepen our faith and go to God and to the Bible for answers. God is clearly forming new habits in tracee and i.
i have always struggled with fears and anxiety - on various levels. some have been warranted, others not, but regardless they have been there. this journey we are now on has changed my perspective on so many things and helped me try and take life more in stride. every little thing that happens isn't the end of the world!
on a very cool note, we had a realtor forum at work today and our president was in town to give the presentation to them about rates and programs, etc. she happened to mention that my wife had given birth to a 1 pound 3 ounce baby that we are so thankful for. a realtor who was sitting in front of me turned around and said "i've been praying for you guys!" she later confirmed that it was indeed gavin and went on to tell the room about him and how she knew about him and our story through a friend of hers that knows my mother-in-law Karen. what a small world! i felt so encouraged as she shared with me after the meeting that she sits at the computer and reads our story and prays for us. as her eyes began to fill with tears mine did too. some people will say that's just coincidence, but is it? i tend to lean towards God's provision and showing me in that moment that we are cared about and loved and that He continues to watch out for us. I hope this continues to bless you friends.

jeramy

i love my boys!

2010-04-12T21:01:00.001-07:00

gosh...it is so nice to be back on the computer and blog again. before i let you all know about our day, i just want to send out the biggest thanks i possibly can to my wonderful, loving husband. he took care of me in a way that i cannot even begin to explain. he kept up with the blog, along with everything else in our life so that i could take care of myself and precious, little gavin. honey...you are my rock. i fall in love with you more and more every day and i thank GOD that He placed you in my life. you have been such a Godly leader. i hope gavin grows up to be just like you.

last night, one of the night time nurses was going to attempt to put a picc line in gavin. they would only try one time and if it wasn't successful, they would try again in a couple days so he wouldn't be too agitated. she was able to place it on his leg and it was perfectly inserted the first time! what an answer to prayer! because they have the picc line inserted now, they were able to take out one of his umilical lines and tomorrow, they will remove another. what a huge blessing. our poor little guy has so many cords and tubes coming in and out of his teeny little body that it is so nice to see a couple of them coming out.

jeramy went back to work today so, since i am unable to drive, he took me to the hospital on his way. when we got there, we were told that they had already done his head ultrasound and his chest x-ray. they would have the results for us by the afternoon. so we waited...

meanwhile, jeramy went in to work and my mom came to stay with me. we did not stay at the hospital though because i had her take me across the street to the doctor's office. i have been having bad headaches when i stand up. they go away instantly when i lay down and when i explained this to the doctor's office, they wanted to see me right away. when i got there, they saw that my blood pressure was still pretty high so they drew some more labs. it could be one of two things, either postpartum preclampsia or a problem with the spinal they gave me prior to my c-section. if it is the problem with the spinal, they will do a blood patch over that spot under anesthesia. go figure...we can't catch a break it seems! we will keep you posted...

when we returned to the hospital from the doctor's office, we were greeted with amazing news...his head ultrasound looked good! if there was something wrong, they rate the problem on a scale of 1-4, 4 being the worst. they rated gavin at less than a 1 (more like a zero). go gavin! that may be the only time that mom will be okay with you scoring a zero on a test, kiddo! i immediately called his daddy to share what God had done and we cried and cried. what a mighty God we serve!

his lungs still look rather hazy on the x-ray so we can continue to pray specifically for that...poor little guy. he just needs strong, clear, healthy lungs!

i spent the rest of the day with my little boy, placing my hands on him, calming him when he became agitated, singing to him, and praying with him. we were joined by jeramy later in the afternoon for his diaper change...jeramy got to change his diaper for the first time. he did wonderful maneuvering around the various cords and, as jeramy put it, "having a 6'2. 200 pound man" trying to change this little one's diaper through two small holes in his incubator was a bit of a challenge!

all in all, it was a wonderful day. gavin is resting as they are trying to keep him as calm and relaxed as possible. i can't wait to see him tomorrow morning. thank you so much for praying for our family as often as you do. we truly believe in the power of prayer and we know that God is at work. we appreciate your continued prayer for gavin's lungs, that they would become more clear and that they would open up more. God has showed us His hand numerous times in these last weeks and we have confidence that He will continue to heal gavin. you all are the best. thanks again!

i have the best life ever...and i love my boys!

1 Peter 5:10-11
And the God of all grace, who called you to His eternal glory in Christ, after you have suffered a little while, will Himself restore you and make you strong, firm and steadfast. To Him be the power forever and ever. Amen.

one foot in front of the other

2010-04-11T19:27:00.001-07:00

my folks met us down at the hospital yesterday morning and tracee and i had a chance to talk to the dr's and nursing staff about what had happened the night before. we started to feel more comfortable about the nature of what happened with gavin's breathing tube and that he was never truly without oxygen. his tube is the smallest possible tube they have and so naturally, at times, mucuous or saliva can coat the tube and restrict air or they can dislodge their tubes and this happens occasionally. some encouragement for us was that at one point they had is oxygen level all the way up to 100% but when we showed up it was down to 45%. after spending a couple of hours with gavin and my folks, they took off and we decided to go grab a bite to eat and come back for his 2pm diaper change and touch time. when we came back it was also time for his afternoon xray. they have been keeping a close eye on his lungs and have been looking for them to open up. well, just about 10 minutes after his touch time and xray his heart rate began to drop as well as his oxygenation rate. we obviously started to get worried as things were dropping pretty quick. there were about 5 nurses and respiratory therapists around him when one of the nurse practitioners came in and said "you've got to turn down his oxygen levels, his lungs are hyperinflated and it's squeezing his heart and pushing his diaphragm down." i thought about the word hyperinflated for a minute and knew it wasn't a word we had heard yet relating to gavin. i wanted to make sure i knew what i thought she was saying: his lungs had opened up! after they got things dialed down, he came right back in line and was doing great again. she pulled us into her office to take a look at the xray. it was literally a night and day difference between his 4am chest xray and his 3pm one. his earlier one was real white and hazy and the new one was beautiful! thank you God! from that point on, gavin was fairly active and they all attributed it to the fact that he was probably feeling much better now that his lungs were opened up. they gave him some more sedation to keep him comfortable and after spending about 5 hours in the NICU with him yesterday, we called it a day.
as we drove home we praised the Lord for leading us one step at a time and for giving us great news. thank you to all who have been praying specifically for what we have been asking God for. after having such a horrible night on friday night we made a tough decision to just not call the NICU and to trust in the Lord and pray, and know that if anything concerning was going to happen that the NICU would call. we phoned in this morning and were greeted with news that gavin had a pretty uneventful night and that his lungs continued to look good and they were working to ween his oxygen levels down even further - they now had them down to about 38%. yeah!!! once again the Lord showed Himself faithful to us as we really just had to trust in Him. and He delivered. for both of us, He is really teaching us to be reliant on Him and that He is the one in control. neither tracee nor i can adequately provide for gavin in his condition, so we trust and entrust.
we went to church at SBC and then headed over to the NICU afterwards. tracee and i got a chance to participate in gavin's touch time today! tracee helped change his diaper - which was poopy :-), and i was able to wipe his little eyes and dab his little mouth. it was very special for both of us. the neonatologist gave us an update on his condition. he continues to get little blood transfusions and they continue to keep him sedated to keep him comfortable. he remains on his course of antibiotics but still everything looks as if he does not have any infections. we were notified that they will plan to put in a PICC line this evening and that will serve as his new main line. please pray for this as it is fairly major for these little guys. there are some potential complications with infections and the fact that they have to look for a "big" vein. that simply means there isn't much margin of error with gav as he is so tiny.
finally, he will receive a head ultrasound tomorrow at some point and they will be checking for any major brain bleeds. please, please pray for NO bleeds and fantastic news for us and for him!!! this is probably one of the biggest prayers we have needed to this point. they are all important but this is really big! so the 2 major items on the prayer list right now are the PICC line and the head ultrasound. please continue to pray for peace for us and for wisdom of the medical staff attending to him 24/7. everytime we see him and get a chance to participate in little activities with him, we love him even more. for all of you parents, i know you understand what i mean.
someone left this on our blog as encouragement and it is spot on for where we stand: “Therefore I say to you, whatever things you ask when you pray, believe that you receive them, and you will have them.” (Mark 11:24)
we believe and trust that you do too. Savior; He can move the mountains, our God is mighty to save, He is might to save.
we are looking forward to bringing you wonderful news of gavin's ultrasound and successful PICC line!

jeramy

discharged and blue

2010-04-10T10:56:00.001-07:00

this will be quick. tracee was discharged from the hospital yesterday afternoon which was a huge blessing! we were so glad to get home and begin to rest in our own house and yet torn because we had to leave gavin. we know that he is in the best possible hands as at his size and stature there is nothing tracee and i could possibly do for him. we had a pretty good afternoon here at home and evening - gavin was tolerating his feedings and was receiving his first blood transfusion and all looked ok as of 7:30 when tracee had called. about 11ish we decided to call over to the NICU to check on gavin before bed. when we spoke to the nurse she informed me that he had begun to turn blue and that he must have either dislodged his breathing tube or had a lot of secretions in the way that was blocking it. the oscillator wasn't moving his little belly the way it should. i asked to speak to the dr. after she informed me that he was now returning back to stable. the dr. spoke to us and told us that he had been able to act pretty quickly but that there is no way to tell at this point if any damage had been done to gavin's body. we will have to wait until they do an ultrasound of his brain at about 7 days of life. all kinds of thoughts and emotions began to run through our bodies as we pondered all of this and took it in over the phone. the dr. was so clinical with us calling gavin "the infant." he's our son, he has a name. i was reading in Hebrews 11 this morning about faith. we must believe with conviction that gavin will be healed and that NO damage was done to his body over this!!! "now faith is being sure of what we hope for and certain of what we do not see." Hebrews 11:1
this is what we stand on this morning! we have to remain confident and sure in what we hope for for gavin. for whatever reason the nights are ridiculously hard for us. things seem to get out of control at night and he has his dips during these times. please pray hard for protection over him and for us.
last night we were hit with another blow in an attempt to shake our faith once again. but tracee and i are holding each other tightly and trusting in the living God who heals and still performs miracles on an ongoing basis!
be in prayer with us and pray that today is a really good day and that his lungs begin to take on a whole new ability. we love him more than anything.

jeramy

rain, rain go away

2010-04-08T19:33:00.001-07:00

i heard that the weather was nice today. from the window i didn't see any rainclouds or evidence of wet streets, but in here, we were singing that little rhyme "rain rain go away, come again another day." tracee woke me up this morning at 5:50 scared about some twitching she was experiencing due to a mild epileptic condition that she has. she hasn't had any issues in about a year but they are brought on by stress, fatigue and anxiety. hmmmm...have we had any of that? i need to be better about making sure she gets the rest she needs but quite frankly i was so excited to be getting her back to normal that i didn't think much about it. so we shut it down hard core here today - no visitors, and signs posted on the door stating "mom sleeping." her and i both did so. i was able to lay in bed with her today and both of us got the best sleep we have had in weeks. even though we won't be bringing gavin home with us, we are excited to begin to get some things back to normal and having a chance to live again.
it looks like gavin will continue to be on the oscillator for another week or so but they were able to bring down some of his oxygen levels through that machine and still keep his oxygenation rate in the range they want which is exciting for us! he isn't on any more dopamine and was able to get his first feeding today (as i said, a micro amount) and that seemed to go ok. they only introduce food to their little guts at this age to begin to get them ready for some real nutrition later on. tracee was able to provide his feeding! she was able to get a couple of mL's into a bottle but that is all it takes! a couple of nurses were telling me how adorable they thought he was and i agree. :-)
one of the moms in there today was telling me about her baby who is one of gavin's podmates. he is 36.5 weeks old now but was born at 26.2 and was 2.5 pounds. he now weighs 5lb.14oz. although he wasn't really growth restricted like gavin, it is exciting to see how much he has grown and that he is in a position to go home in a few weeks after being in there since January 26th.
gavin remains under the spotlight and his lungs are still hazy on the xrays, but we remain steadfast in the Lord and rejuvenated by those who provide scripture to us and words of encouragement. i pray over his little giraffe incubator everytime i go and visit him. every little detail about him is perfect. God didn't make any mistakes. He is now using gavin to grow tracee and i. my son is ministering to us and that isn't exactly how we had planned it. nevertheless, we desire to just take it day by day. you can specifically pray for his lungs to open up some more and that he will continue to tolerate his feedings. you can pray for his blood pressures and an upcoming blood transfusion that he will most certainly need. you can pray for tracee's improved health as we begin to approach a discharge date and time. you can pray for rest for me and calm in the storms of my family. thank you dear friends and others that we don't know who read, it is an encouragement to us.
God bless you all.

jeramy

catching some rays

2010-04-07T21:25:00.001-07:00

today was a much better day than yesterday. thank God!! we really needed that and He delivered. today i had a chance to take my dad into the NICU to see gavin and then tracee's sister aimee was able to come by and see him as well. about that time they placed him under a special light to help give him some color back as he has started to become a bit jaundiced. so gavin is catching some rays for the next couple of days under the light. he continues to stay sedated so he remains quiet and content and they can treat him the way they need to without him being too upset. they started a round of antibiotics on him today too as a precautionary measure. my brother josh stopped by this evening and we all went in as that was my first time to see him under the light. he has a cool little pair of "sunglasses" on to keep the light out of his eyes. he is adorable! tracee and i just keep admiring him and saying how beautiful he is. we thought his hair was much darker than it is, but under the light you can really tell that it's a bit lighter. today was exciting for us as they were able to ween gavin off of dopamine (used to help raise his blood pressure)and then he can begin his feedings. they have placed a tube down to his stomach to slowly see how that will go. please pray that he will tolerate this as his little gut is so immature. he is going to get a whopping 1mL every 6 hours of breast milk!
tracee is getting back to normal as she was able to get her IV out today and she is starting to walk around which is awesome. she was able to take a shower a bit ago and i know that makes her feel better. it was special for tracee to get to spend some time in the NICU with gavin all by herself today. she was over there for about 45 minutes with him - so glad she could have some mommy/son time :-) we have been told time and again that this process will be 1 step forward and 2 steps back. i think we are starting to get an understanding of that but we continue to pray and have you pray for more steps forwards than backwards. God doesn't make mistakes and He knew exactly what He was doing in gavin's timeline. we have to continually remind ourselves of that. please pray for the NICU dr's and nurses as they pour into our little one.
thank you to those who have helped with meals, it is so nice to have food brought in and just one less thing to think about. we are still asking that visitors hold off from visiting for another day as tracee tries to get the rest she needs and me too! i have slept very little of late and need to be refreshed for both tracee and gavin. "in the day of trouble i will call to You, for You will answer me. for You are great and do marvelous deeds; you alone are God." Psalm 86:7,10
go suns!!

jeramy

i'm humbled

2010-04-06T19:53:00.001-07:00

i'm trying to write this right now and i have to stop and lean my head back against the wall and stare to the Heavens as i look for composure. i'm choking back tears as i type this very moment. when we discovered that there were complications and issues we would have to overcome, we decided in that moment that we would give God all of the glory and prayed that these circumstances would draw people close to Jesus. we are seeing that unfold before our very eyes. as i check facebook or read the comments on the blog, i am unable to contain myself. scripture tells us that the words of the Lord are sharper than any 2 edged sword, able to separate bone from sinew (paraphrase) and that is absolutely true. i am cut to the core as i read some of the responses and posts from you all. my life will never be the same. i don't have much else to say; other than thank you. please continue to post and to share with us all what God is doing in and through you during this time.
tracee is recovering slowly but surely and that is encouraging and a blessing to me. on another note, my dad called today to let me know that my mom was admitted to scottsdale thompson peak hospital this afternoon with an unknown GI issue but that it could possibly be colitis or a bad bacterial infection. so, i've got both my wife and my mom on morphine in 2 different hospitals at the same time. it really just is what it is. we are praying for 24 hours of good news, taking it 1 day at a time.

jeramy

4/5/10, 8:11, 11.5, 540 and a bunch of other numbers

2010-04-06T13:43:00.001-07:00

gavin james williams was welcomed into the world by a NICU staff of 5, 3 doctors and an anesthesiologist - oh and tracee and i of course. i did my best impression of paparazzi with a flip in one hand and our camera in the other. it was hard to do that and hold tracee's hand at the same time. nevertheless he made his entrance at 8:11pm last night on april 5th. it's an unbelievable experience. to everyone out there that is a parent and has witnessed a c section delivery before you understand. but for us, witnessing it at the minute level that we witnessed it is something else. i remember thinking and probably saying "he's so small." and he is. 1 lb. 3oz. and 11.5 inches long. this kid is awesome. he is doing pretty darn good if i don't say so myself and i was obviously reassured by the doctors and the team of NICU staff that said so themselves. one really cool thing that gavin did was pee all up the respiratory staff member's arm as they laid him on his incubator bed in the OR. this is super special to me because when i was born, just before they weighed me, i peed all over the nurse! like father like son. once they got him all situated in the NICU with making sure his tubes were in the right places, i was able to come out and talk to our families. it was so great having them here as support. i got to ring the baby chime to celebrate gavin's entrance!
after getting everyone updated and showing them some pictures, i went down to visit with tracee. she was at rest and somewhat out of it (understandably) but i was able to show her some pictures and rejoice with her over our new bundle of joy. we prayed and thanked God for him. i said goodbye to our families and sent them in to say goodnight to tracee. we were privaleged to have bill and amy cavness with us. they continue to support and provide counsel to tracee and i and we love them very much.
after they all left i went down to check on gavin one last time and wish him a goodnight too. since they were pretty happy with his vitals and numbers we are pretty happy.
i just want to drive home the continued plea for prayers for gavin. the first week is very critical in terms of potential brain bleeds and other complications that might come up. the doctor came in today (one of the neonatologists) and explained what is going on for gavin. babies can sometimes have a honeymoon stage for the first couple of days where they appear to be doing better than they are. we STAND FIRM in God's provision and TRUST that He will continue to cup gavin in His hands and get him through this most critical time. pray for his health and safety!! pray fervently friends. tracee and i have been brought to tears so many times over posts to the blog that you have left and for messages on fb, via text and emails.
"we are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed." 2 Corinthians 2:8-9.
more to come.

jeramy

7:30pm

2010-04-05T18:40:00.000-07:00

baby gavin is on his way in less than an hour. please pray for the Lord's provision and for the perfect care that we know He will provide.
we are getting tracee all prepped now and i'm just about to get a bite to eat and get my mind right before we head in. the nurses are keeping tracee's spirits up and i'm doing my best as well. parenthood is upon us and then we will begin our next part of the journey: recouperating tracee and nurturing baby gavin.
thank you to all -

jeramy

the question

2010-04-05T13:37:00.001-07:00

"to be or not to be, that is the question" as we have all heard it.
well for us it has become to deliver or not to deliver: that truly is the question. right now we have some medical debate over whether it is time or not and it continues to put tracee and i back to placing our hope and trust in the Lord. baby gavin scored another 8of8 on his biophysical profile today. he had the hiccups on the ultrasound :-). both tracee and he have been lethargic due to the medicines she has been on as we balance the progression of gavin in the womb and the preeclampsia in tracee. this is so hard for us, i won't even begin to sugar coat the ups and downs we have experienced for several weeks now and especially in the last week since we have been in here. we know that your thoughts and prayers continue to go out to us and for us and we are forever grateful for that. our thought has been that we feel privelaged that this circumstance has caused so many people to cry out to God and to pray for us and for gavin. we know that God has purpose in all He does and if people have drawn closer to Him in this time, amen. we are tired. from air mattresses that continue to deflate in the middle of the night to tracee trying to find a comfortable place being hooked up to any and everything, makes it quite challenging.
the weather looks like it's nice out there but i wouldn't know. neither tracee nor i have been outside since saturday. if i never hear another blood pressure monitor beep or an IV pump chirp when it's empty, I'll be ok. obviously you can sense some frustrations; it's just me being real.
if there are things that i'm not addressing or any questions or concerns that you might have, please leave us a comment on the blog and i'll do my best to address it. like so many psalmists did, they rattled off complaints and frustrations and then always made sure to end with acknowledgement of the Lord. i will do the same. it's so nice to know that we have a paraclete, a helper who goes before us and prepares a path and defends us in our time of need. He hears the cries of His children and He fights for us.

jeramy

poked and prodded

2010-04-04T11:35:00.001-07:00

so i am pretty sure that this is a cattle phrase, however that is exactly what tracee has been going through over the past 15 hours. her symptoms with the preeclampsia took a bit of a turn late last night and her blood pressure started moving north of 200/100. the concern for tracee's health pushed the dr's forward with a number of medicines to combat the high blood pressure and to slow down what was, in that moment, "a possible imminent delivery." our families rushed down to join us sometime after 10:30 and we hung out until about 11:30 to find out that delivery was now being pushed to the back burner as the medicine had brought her blood pressure back in line. the medicine worked so well in fact that her blood pressure did a complete 180 and was now on the low end of the spectrum. she was put back on constant fetal monitoring as they anticipated that the medicine would make gavin sleepy and lethargic, just as it did to tracee. i am so proud of tracee and the little trooper she has been in all of this to lay in that bed and take the needles and the monitoring and the medicines, etc. all in the name of protecting our family's health. we continue to covet your prayers as we celebrate Easter Sunday here in the hospital. one of the doctors from phoenix perinatal came in with another doctor today to discuss what had occured with tracee and baby over the last bit of time. they seemed relieved to see us in the position we are in now and thankful that they didn't have to pull the trigger and deliver last night. we are so thankful for each and every morning that comes as it spells a new day and one more day that gavin gets to spend in the womb. i prayed that God would place His hand on tracee and that He would hold gavin in His hands at that very moment and i feel that He delivered in that moment. the dr's explained to us this morning that things can change very quickly as we witnessed last night. we are trying to do some quick visits with family today but from here on out we are asking that no one stop by and visit. tracee and gavin need their rest and we need to leave room for the dr's and the nurses to do what they need to do.
we love and thank you all for continuing to read the blog and pass it along and keeping us in your prayers. songs come to my mind each and every day. this morning: God is good all the time, He put a song of praise in this heart of mine. He sustains.

jeramy

the NICU

2010-04-03T11:02:00.001-07:00

jeramy here. a couple of days ago we had a chance to visit the NICU and meet and greet the team and get a tour of what's to come. one of the neonatologists was there to greet us along with one of the NICU's chief nurses. the neonatologist that met us had also done our neonatal consultation on tuesday and gave us a pretty good idea of what to expect for babies born at 26 weeks. things like their sucking reflexes haven't really kicked in yet and the front of their eyes are there but the nerves that reach out to attach to the retina have yet to do so and that will still take some time.
the NICU is broken into 5 different pods and there are 4 beds to a pod. they walked us down to the first pod to give us a glimpse of what the "bigger" babies look like. these babies are about 4-5 pounds or so. as you move further down the line, the babies get smaller and smaller. God becomes even more real in that moment as you comprehend how He cares for the little ones as the Scriptures describe.
we felt very confident in the NICU and know that gavin will get excellent care. there are so many people in there and they all have a specific job. these guys know what they are doing. the neonatologist loves his job and didn't skip a beat when explaining things which made tracee and i extremely confident. i might have mentioned this before but gavin's "go home" date will be based off of his original due date which is july 6th. so you all can do the math but we are looking at about a 3 month stay in the NICU for gavin. can this really be happening? i say that because when we stop and really think about it, it seems so surreal as if it isn't really happening to us.
we keep praying towards april 13th (28 weeks) and that he would put on some more weight between now and then. we covet all of your continued prayers and "we wait in hope for the Lord; He is our help and our shield. in Him our hearts rejoice, for we trust in His holy name." Psalm 33:20-21.

please continue to read the blog and pass it along to others. while we love to get visitors we need to limit visit times to about 20-25 minutes and please no medical questions about what is going on as we will do our best to provide all of that information here. that way you guys can bring as much normalcy inside this hospital room as possible. we love you and thank you.

jeramy

getting back online

2010-04-01T13:34:00.001-07:00

so i, jeramy/hubby have been designated to take this part of our journey over at this point to give tracee some time to continue to relax and focus on what is most important right now: taking care of baby gavin and tracee.
as a rule of thumb moving forward we are asking that each and every person read our blog first before coming to visit. when people are here we aren't going to answer medical related questions as it is too much to repeat and re-repeat ourselves over and over again regarding the health of tracee and gavin. please pass this blog on to any and everyone who would like to know our status and this will serve as the most up to date information and a way that people can continue to pray for us and love on us.
let me start where we left off - or if not, this is the best you guys are gonna get ;-):
monday afternoon we had our scheduled ultrasound at phoenix perinatal. earlier before this appointment at 4pm, tracee had gone over to see her o.b. and get her urine checked as well as her blood pressure. tracee called me just before 4 to check on my status as i was heading over from work. i met her there and we did our "very regular" weekly ultrasound. the doctor came in (who happens to be tracee's o.b's brother-in-law) and he went over everything with us. he let us know that he started phoenix perinatal back in the day and he was responsible for hiring most of the dr's. who are there. that was very reassuring for us. gavin's biophysical profile was 8 out of 8 again (measures his movement/breathing/fluid levels, etc) go gavin! his recommendation was to do ultrasounds on monday's and thursday's moving forward and continue to chart gavin's growth and do his biophysical profiles to make sure all was well with him. just as all 3 of us had been in agreement about what the plan would be, tracee brought up the fact that her doctor's assistant had called to tell her to mention to the dr. doing our ultrasound that her urine was at a "3+." once tracee gave the perinatologist this information his demeanor changed and he said "oh, ok. well that changes everything then." based on what he now knew, tracee's protein levels in her urine were on the rise and that was a major symptom of preeclampsia. he described preeclampsia like that of a snowstorm. it can come on and be upon you before you even now it. with that information he discussed things with tracee's doctor and decided to admit tracee to scottsdale shea hospital and we have been here ever since. the initial plan was to do a 24 hour urine screen to make sure that they weren't getting false results on what the urine was telling them. about 5:30pm we got over to the hospital and by about 8pm she had begun her testing. in addition to that they hooked gavin up to a fetal monitor to track his heart rate and monitor for contractions and tracee's blood pressure. tracee's doctor came in late that night about 11pm and discussed with us that her thoughts were that this baby was going to be coming to us sooner rather than later and that at this point tracee being released after 24 hours wasn't going to be an option any longer. bummer! however, we knew that this was the best possible place for her to be as we wouldn't have the stress of wondering whether he was doing good or not from home.
that first night was a rough night of sleep. tracee had about 12 pillows on her bed trying to get comfortable. the nurses kept coming in to put her back on her back as they kept losing gavin on the monitor. being stuck on your back and pregnant in an uncomfortable labor and delivery bed was not a good mix. it wasn't any better for me either. i slept on this "slightly padded" bench/couch and got about 2.5 hours of sleep.
tuesday was filled with continued monitoring and blood draws and of course complete bed rest. the dr's and nurses continue to evaluate the best plan of attack for keeping tracee and gavin safe at the same time. tracee's doctor was in on her day off and explained that gavin had done some funky stuff for about a 4 minute period with his heart rate and so she wanted to continue to monitor him to make sure they didn't see anything else like that or a continued pattern that may warrant delivery. continued prayer!
we were greeted with lots of visitors on tuesday and tracee felt compelled to entertain them all and be as good of a host as she possibly could. not only is she doing that for gavin but trying for everyone else. as you can possibly imagine that came to a head and tracee's emotions finally got the best of her in front of most of our family here. that was the signal to shut it down for the night and get to bed about 9pm. i got smart and opted for a blow up air mattress! both of us slept much better - probably tracee even moreso with the ambien. she always gets the good stuff!
bright and early on wednesday morning, tracee's doctor was at our bedside about 6am to let tracee know that the urine results were back: above normal is anything greater than 300 in terms of protein in the urine and she was at a 3815. ok, severe preeclampsia was the continued diagnosis and basically that was what they were now determining was a big contributing factor to gavin's growth restriction and some of the blood flow problems he has been having with his cord. at least at this point we had somewhat of a diagnosis as up until this point gavin had been labeled "a mystery."
Good news on her doctor's visit though - gavin's heart and activity had looked great and her blood pressures had come down and were much improved so tracee was taken off of constant monitoring for gavin and she was now allowed to take a once a day wheelchair trip around the hospital and enjoy a little more freedom! :-)
the nursing staff in addition to the doctors have been amazing and as it turns out, rachel, our 7pm to 7am nurse, is a Christian and prays for us and for baby gavin. thank you Lord for your guidance and provision. we visited the NICU for our tour about 11:30 but i will write about that in a separate post. we were greeted with our first meal being brought to us here in the hospital by some dear friends. thank you! we had a few more visitors last night but in a very relaxed environment. i stepped out for a bit with the boys and grabbed a beer and was able to relax a bit away from the hospital. mel and krystal stayed here with tracee and i know she really enjoyed that time with good girlfriends.
they continue to monitor gavin once every 12 hours to see how he is doing and every time they take him off after about 20-30 minutes as they are seeing everything they want to see!! yeah!! tracee has been doing hydrotherapy in the jetted tub here and continues to take it easy and is doing well. we are so thankful and know that God is walking with us step by step and has a plan. "the Lord is near to all who call on Him, to all who call on Him in truth." Psalm 145:18.
today has been a pretty uneventful day and we will look to do our wheelchair run here soon and hopefully get her a few minutes of fresh air outside. oh yeah, gavin had his ultrasound here in the hospital this morning and he continues to look great and got a 100% (8 out of 8) again on his biophysical profile test!! that's my boy!
we are turning our focus and our prayers towards getting gavin to 28 weeks as that is a big milestone for little babies in terms of long term health and viability, etc. fyi - that day is april 13th. save the date. and then when we get there, we will give you a new one. :-)
that's it for now (yeah, i know i already wrote a short story novel) but we wanted to try and get everyone caught up. remember to continue to check back and direct everyone to this as the source of information. we love you all.

jeramy

sunshine!

2010-03-28T19:42:00.000-07:00

today was such a good day. jeramy and i went to the pool to do my hydrotherapy and then lounged around outside all afternoon. it was so nice just to lay in the shade, nap, read and eat the yummy picnic that my hubby prepared for us. gosh, we needed to get out of the house and i have to say...that was the best way to do bed rest. we had a blast laying outside in beautiful 77 degree weather.

it has been hard staying cooped up in the house, either in bed or on the couch so it was definitely a treat to get to spend the day outside. things have been so low key around the house that it was kind of like a date...and it left us both feeling refreshed and ready for a new week.

please keep us in your prayers tomorrow. i will have some additional blood work done and then we have our ultrasound at 4:15. they will be looking at his weight, the amniotic fluid, and the cord. we know that God is completely at work and are excited to see what He did for our little one this past week.

since i had the steroid treatments, i feel like he has become a lot stronger. he has been quite the kicker these past couple days. i am praying he has put on some more weight! come on gavin!!!!

visitors!

2010-03-27T18:53:00.000-07:00

today has been a good day. joanna and bridget, from work, came over to visit. it was so nice to chat and get to hear all about what is going on at work. it's crazy how much you miss it when you aren't there! they brought me a bunch of stuff ranging from magazines to books to dvd's. i love it! they also got to feel him move, which was super exciting. he has been moving a lot today, which makes me feel so at peace.

oh...and have i mentioned how awesome my husband is???? he is doing so much around the house and went grocery shopping today. he got me all kinds of goodies that i love...ice cream, bananas, pineapple, applesauce, stuff for waffles, yummy cereal, etc. gosh, i'm lucky. he is now cooking dinner for us-pesto chicken pasta. seriously, it concerns me how lost i would be without him! ha ha!

God, thank you for my husband. he's my better half indeed.

come on!!!

2010-03-26T14:07:00.000-07:00

i just got a call from the nurse that we saw this morning and she said that my protein levels have increased again. they don't want me coming down to the hospital right now since my blood pressure was looking better this morning. the high levels of protein are one of the things they look at when watching for preeclampsia.

the nurse gave me her cell phone number in case i have complications over the weekend. that way, she can call my doctor directly if i need to be admitted into labor and delivery. let's all pray that this is not the case and that this weekend goes by without any problems. jeramy and i need some days without going to the doctor/hospital. we've been there every day this week.

all of this really gives new meaning to "living day to day"...

good news

2010-03-26T12:54:00.000-07:00

we went to the doctor this morning to have my blood pressure checked since it has been pretty high the last few days. it was looking much better today. yay!!! they want to continue to monitor it so that they can catch preeclampsia if that ends up becoming an issue.

i am feeling a little better today...not as sore as yesterday. we did go to the hospital last night because my pain had increased drastically between 4:00 and 9:00. they told us there was possibilities of side effects from the steroids, such as contractions. everything checked out okay, which is, again, great news. we got hooked up to the monitors since we weren't feeling him move and once on them, we were able to see that his heart rate and movement looked great. jeramy and i love being able to see that his heart rate is okay and that he is moving. it is just a lot of pressure, especially for me since i am supposed to go to the hospital if i notice a lack of movement or decrease in movement. it's such a difficult line. prior to last wednesday, when we found out what was going on, i didn't read into anything like that. now, it is so hard though because i don't want to "cry wolf", but i also don't want to be stubborn, assuming everything is okay, if it's not. geez...no wonder my blood pressure has been high!

i am really looking forward to today. my mom and sister are coming over in a bit to keep me company and to help clean. then later this evening, my dad and brother-in-law will also come over to join us all for dinner when jeramy gets home from work. company always makes the days go by quicker!

we love you all and thank you still for your support and prayers. God is good...all the time!

Phillipians 4:19
"and my God will meet all your needs, according to His glorious riches in Christ Jesus."

tough day

2010-03-25T19:52:00.000-07:00

today has been a pretty rough day. i am very sore from the two rounds of steroid shots, but...it's all worth it in the end. i am continuing to do an hour of hydrotherapy every day (the only thing my doctor is allowing me to do while on bed rest). for those of you unfamiliar with hydrotherapy, i was right there with you. hydrotherapy is where you are submerged in water to your shoulders in a heated pool. this has been known to help blood flow increase/restore. luckily, my sister in law and mother in law have been keeping me company while i stand in a pool for an hour. i gotta say...pretty boring when you are all by yourself!

speaking of, did i mention that i have been on bed rest "officially" for 3 days and i already am going crazy. lucky for me, my dad came armed with bagels and movies to help get me through the day today. ordinarily, if i was working, bed rest would sound so delightful; however, when you are forced to stay laying down, only to get up to go to the bathroom, shower and eat, it is quite possibly the hardest thing to do ever.

destiny and reggie (along with Alivya) came over to the house this evening and brought us yummy enchiladas and brownies. for those of you who don't know the alfonso's...you're missing out! they are quite possibly the kindest people ever. oh, and destiny is one fantastic cook!

we appreciate your continual thoughts and prayers as we are still living day to day and week to week. again, gavin's next big milestone is getting to 28 weeks. that will be april 13th. come on buddy...keep on growing!!!!

Romans 5:3-5
"...but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. and hope does not disappoint us..."

update on gavin

2010-03-24T20:13:00.000-07:00

well, it has been quite a week. i am going to start from the beginning - last wednesday. my hope is that this blog will help everyone stay updated on newest developments. also, i think it's important that everyone has the correct information and now you can hear it straight from us! so...here we go!

up until last wednesday, i had the most perfect, textbook pregnancy. i felt great and i loved being pregnant! we had an ultrasound at 19 weeks to find out the sex of the baby and then were asked to come back at 22 weeks for additional measurements that they were unable to get at 19 weeks. after our 22 week ultrasound, they asked us to come back yet again for an ultrasound 2 weeks later at 24 weeks (that was last wednesday). when we went back, we were told that there appeared to be a few areas of concern.
the first area of concern was a spot in gavin's stomach/intestines that they had been monitoring since 22 weeks. they are still unsure of what this is, perhaps blood, but it doesn't appear to be anything of huge concern at this time...just something to monitor. the next thing they told us was that my amniotic fluid was abnormally low. normal is anywhere between 8 and 25 cc's or some term like that! my fluid levels were at a 7.7. this was alarming to them. the next thing (yes, something else) they brought to our attention was the fact that there was no endiastolic flow through the umbilical cord. let me explain...when his heart contracts as it's beating, there is blood flow, called cistolic flow. however, when his heart releases, there is supposed to be blood flow, called endiastolic flow. our little guy had none. again...this was cause for huge concern with the doctors.

as you can imagine, jeramy and i were so shocked and quite frankly, caught off guard by this news, especially since we have had such a wonderful pregnancy thus far. we then scheduled an appointment for friday with our ob. we met with her to go over questions/etc. she didn't really have any answers for us. she told us this is not something they see and we were a "puzzle" to her and to the perinatologists. we talked with family and friends immediately following our appointment on wednesday and began praying for God's healing touch on our little one. since there were no answers/explanations from the doctors, we knew that this was giving God such a huge opportunity to show His strength and faithfulness to us. boy did He ever!

we went in this past monday for yet another ultrasound. the doctor came in and told us that my amniotic fluid doubled since wednesday. he said, "what have you been doing to get your levels up like this?" jeramy's response..."we prayed". he looked at us again and said, "yeah, but in addition to that, what have you been doing?". my response..."having other people pray". we believe with all our heart that God alone provided more amniotic fluid over those 5 short days. my fluid levels are currently at 15.2 (well in the range of where they should be). the next thing they looked at was the cord and the blood flow in it. they were able to catch movement in the cord when his heart was releasing. they said it wasn't strong enough to get through to him, but there was some movement...which is progress!

they had me go into the hospital yesterday to begin steroid treatments. i had my first round yesterday and my second round today. the reason they are giving the steroid is because it helps lung development for babies born prematurely. the steroid needs to be in my system for 48 hours prior to delivery in order for it to work on his lungs the way that it needs to.

when we met with our ob last friday, i asked her if i am going to lose the baby, deliver early, or carry full term. she said she doesn't know yet. there is still a chance that we will lose the baby although, each day that goes by, i am confident about the progress he is making. and keep in mind that now that my fluid levels have increased, this is less of a possibility. it is pretty apparent at this stage that this baby is coming early. just how early is the question. we want him to stay in there as long as possible if it is the best place for him. however, if the environment becomes to "hostile" for him, and they can grow him better outside the womb, so be it.

at this stage, jeramy and i are living day to day, not knowing what tomorrow brings. but we know one thing......GOD is more in control of our lives now than He has ever been! we have been so thankful to go through this trying time together, to grow our relationship in Christ and with each other. it's a scary place to be with nothing to hold to but your faith, but i have to say, there is no other place we'd rather be.

we are also so thankful for friends and family. people have come through for us in ways we have only dreamed of. a dear friend from church has organized meals for us on mondays, wednesdays and fridays. we are in awe of that! people everywhere are praying...even on the other side of the world. gosh, we feel your prayers. please, please, please, keep them coming!

i realize that this post is extremely long. they won't all be like this as i will be able to update daily...since i am on complete bed rest from now until this little guy graces us with his presence. i hope you feel free to comment, follow, or just occasionally check in with us on here. we will keep you updated as soon as we have more information. like i said, we are going at it day by day.

here are some specific prayer requests...

pray for gavin's next milestone of making it to 28 weeks inside my belly. the doctors say that this is a huge step in his progress and lessens his chances of ongoing complications.
pray for jeramy...he is feeling under the weather (understandable right?). he is the most amazing man ever and i respect and admire his strength and Godliness during this time. you have been my rock honey.
pray for me to get better rest at night and for my mind to stay out of "dark places" (the what if's i often ask myself)
pray for God to continue to strengthen our marriage and grow us during this time.
pray for our families as this has been affecting them so much too.

we love you all so much and look forward to going through this time with all of you. GOD IS IN CONTROL!

Psalm 112:7
"he will have no fear of bad news; his heart is steadfast, trusting in the Lord".

oh baby!!!

2010-03-13T14:35:00.000-07:00

well...i am almost 24 weeks along and my belly is definitely growing! it has been so much fun being pregnant. i love every single day. i guess i am pretty blessed because i have had a very "textbook" pregnancy. my energy is really high and i feel great going into my 6th month. jeramy and i are really getting excited about meeting him and we love getting to feel him move! i feel him all the time and i have to say, it truly is one of the best feelings i have ever experienced. i find it almost soothing/comforting when he kicks me. ha ha! i love knowing that he's growing and i love feeling him stronger and stronger each and every day.

work is going really well. i am officially on spring break, which is really nice because i feel like i have so much sleep to catch up on! in addition to that, we found out recently that the man we rent our house from is selling it. we had potential buyers come through today to take a look and they love it. fortunately for us, if they end up getting it, they don't want to move in until january of next year. that works nicely for us since a move in the near future isn't quite so appealing to us. jeramy's work is going pretty well with taylor morrison. he is so talented and they just love him over there. we are praying about other opportunities at the moment and know that God will guide us in making the right decisions. after all...He has always provided for us.

we finished painting the nursery today. we went with green. actually the color is called "safari green". it is the greatest color ever! i love it. we found the furniture that we want for the nursery too, which is really exciting. i can't wait to see how it all comes together. my "to do" list is a mile and a half long, which is another reason i am glad that i have next week off. i think we plan on registering this week too, which is overwhelming and super exciting! Here is a picture of the furniture we are going to get.

have a great week and wish us luck as we move forward, trusting that God will provide!

it's a...

2010-02-25T14:59:00.000-07:00

we prayed for this and BOY oh BOY, are we thrilled!!! jeramy is definitely feeling especially proud of himself...apparently, i didn't have much to do with it :) i guess that is such a guy thing to feel proud when you find out you're having a boy. the look on his face during the ultrasound was priceless. we were so excited during the ultrasound because we got to watch him move around for such a long time...man, he's quite the mover! he has the most precious feet i have ever seen and i can't wait to kiss those little toes. i think he already has jeramy's pouty lip and he definitely has my toes from what it looks like!

i feel him move all the time, which is most definitely one of my favorite parts of being pregnant! the not so great parts..........well, let's just say, i have never seen the inside of my belly button to the extent i do now, my clothes are so tight that i feel as though i am suffocating our child, i have heartburn like a 65 year old man, i cry over EVERYTHING (just ask my hubby), my feet are always freezing, i feel like i might as well sleep in the bathroom because it seems as though i have to go every 10 minutes, all i want to do is sleep, my tailbone hurts if i sit too long, oh...and the newest "discovery" i am making is that it can potentially be dangerous to sneeze with a full bladder. lovely!

aside from the "unexpected issues", pregnancy has been wonderful!! i feel great. i am a little over 5 months along now and i feel him move more and more each day. God is good and every day, we get more and more excited about meeting our son! :)

our little blessing

2009-12-04T13:03:00.000-07:00

well...it happened. we are having a baby! words cannot even begin to express what it feels like to have a life growing inside me. there are so many changes beginning to take place. it's actually crazy how fast your body adapts to life inside of you! if you were to ask my husband, he would tell you these things: she's very tired, can never choose what she wants to eat because "nothing sounds good", she's nauseas, she cries over everything and she thinks she's getting fat. now, i am not going to disagree with any of those things as they are most definitely true! ha ha!

but in addition to those things, there are things i am experiencing that are really tough to put into words. i feel like the luckiest woman in the world. i got to marry my best friend, we were able to get pregnant quickly, and now i get to do the one thing GOD has called me to do...be a mom. something has happened with my outlook on life since becoming pregnant. there is not a day that goes by when i do not think about our child. there is not a day that goes by that i do not think about what kind of mom i want to be. i want to be courageous, soft spoken, loving, patient, kind, firm, encouraging, invested, a role model, tender, compassionate, a listener, and most importantly, a GODLY mom. i think about what our baby's personality is going to be. will they be shy, outgoing, a risk taker? will they look more like jeramy or me? will they have blue eyes or will they have brown eyes?

among these things, i also think about the blessing that it is to have a baby. i don't take the responsibility lightly at all. i want to raise our baby in the LORD and be able to trust that He holds them in His hand.

there are so many things i wonder about. there are so many questions i have. but there are a few things i know for sure. i know that jeramy will be a wonderful dad. i know that i will love that baby more than i could possibly even try to imagine now. i know that our baby will hear about Jesus and see Christ in jeramy's and my relationship. i know that the other things will come together in due time.

what is truth?

2009-10-13T14:49:00.000-07:00

jeramy and i started a new sunday school class about 6 weeks ago called "the truth project". it has been so awesome to learn more concrete things behind what we believe as Christians. i am amazed, however, with how many people in our study have such a wrong view of GOD. it is so strange to me that there is a misconception (even in the church) about who GOD really is. last sunday, we were listening to the speaker talk about evolution and facts that biblically contradict it. yet, there was a man who raised his hand and talked about how since GOD can do what He wants, he could made it "evolution". the response he was given rocked my socks off..."God will not do anything that is against HIS nature and He will not do anything that contradicts the Scriptures. pretty obvious right? well, i thought so. still, so many people still don't get it...and i am talking about Christians. if these are the misconceptions of people IN the church, what is it like for people who aren't even attending church. how much more far off are their perceptions?? scary.

i will praise YOU in this storm

2009-10-05T14:44:00.001-07:00

sometimes it is really hard to see God's plan and timing in everything. right now is one of those times. i don't know why i get stressed out about small things when i know that God has never let go of me; however, i still do. i have been heartbroken watching my hsuband deal with so much stress lately, almost daily. the hardest thing, as a wife, is to see your husband going through something and not know how to fix it. i tried...really hard to fix it by myself. but at this point, i know that my job as his wife is to pray pray pray. it is such a weird feeling when things are completely out of your control, yet in some weird way, it is comforting. why is that?? maybe it is because it's a relief to know that i don't need to stress myself out with it. God tells us to cast all our cares on Him. He wants to do this for me. so why do i still feel helpless?? i guess this is a good time to mention that patience is not a gift of mine. i wish that it was. in my heart, i really do trust in God's plan but i can't seem to get myself to wait. we are told to wait on the Lord...wait on His timing. why can't i do it?! i guess i need to pray for myself too. i need to pray that God shows me how to pray for my husband and how to completely give him over to the Lord.

God, i do trust in You. but it is so hard for me!! i ask for your forgiveness in this area of my life...for trying to do it by myself and keeping you out of the equation. please forgive me. i will wait on You.

Honeymoon!

2009-09-23T20:20:00.000-07:00

i had such a wonderful time on our honeymoon. jeramy put everything together and it couldn't have been more perfect. he planned for us to take a cruise to mexico, including cabo san lucas, mazatlan, and puerto vallarta. jeramy got us a room with a balcony and everything. it was beautiful! i had never cruised before and now i can't wait to go again! jeramy and i both think that next time, it would be so much fun to go with a group of our friends. there is so much to do both on and off the ship. we went jet skiing in cabo, where we got to see land's end (the arch in the ocean). also, we went to a beautiful all-inclusive resort in puerto vallarta, that included all you can eat and drink, beautiful pools, and unlimited use of beach activities (snorkeling, kayaking, etc.) jeramy and i had so much fun with one another. it felt so normal to spend a week together, uninterrupted. now that we are home, it is amazing how i fall in love with him more and more each day. i love the feeling i get when i come home to him each day. the companionship is so amazing and unlike anything i have ever experienced. it is so reassuring to have someone that i wake up with every morning and go to bed with every night. Thanks be to GOD for the blessing of always knowing that i have someone who loves me that much!

our honeymoon seems like so long ago, but every time i look at the pictures, it brings me right back to how much fun it truly was!

not-so-sweet dreams

2009-09-08T21:09:00.000-07:00

okay...i am convinced that my husband has the weirdest dreams ever! i swear, you never truly know everything about your other half until you live together. i was sure that there weren't any "deal breakers" for me when we got married. little did i know that jeramy does and says the CRAZIEST things in his sleep. sleeping in the same bed as him is truly an experience! gosh...i love being married to him. hilarious moments when you least expect them! here are a few of the good ones (and the ones i can actually blog about) ha ha!

this happened while we were dating/engaged. jeramy fell asleep on the couch during a movie:

jeramy: "tracee" (in a frustrated voice)
tracee: "what?"
jeramy: "you didn't put your shoes away"
tracee: "what?"
jeramy: "your shoes....you didn't put them away!"
tracee: "what shoes?"
jeramy: "your barkley's...you didn't put them away."
tracee: "my barkley's?...as in Charles Barkley?"
jeramy: "YES...your barkley's!"
tracee: "are those like basketball shoes?"
jeramy: "yes...your WNBA weapons...you didn't put them away!
**at this point, i had nothing to say...because i couldn't speak! i was laughing so hard!!! I woke jeramy up and we laughed...a lot!!!!!!

shortly after getting married (middle of the night)

jeramy: "tracee" (in a super urgent voice)
tracee: "what?" (thinking something is wrong or happening in our house)
jeramy: "did you lick the paint?"
tracee: "what?"
jeramy: "the paint...did you lick it"
tracee: "no babe...i didn't lick the paint"
**jeramy begins to explain to me that he knew what he was saying and knew it didn't make sense. he talked that out all by himself while i just listened. oh yes...he was still asleep. note to self...people don't present a really good argument to defend themselves while they are still sleeping.

shortly after getting married (middle of the night)

I awaken to jeramy leaping across the bed (i'm sleeping on my stomach). before i know it, he is completely on top of me as if to shield me from something. you can imagine how FREAKED OUT i was to wake up to that! when i asked him what he was doing he proceeded to tell me "you're going to be okay. you're going to be okay". over and over and over again.

~I am now beginning to realize that i am taking after him. the other night, i kept tapping him on the forehead, trying to convince him that i was certain someone was trying to break into our house...how much worse is this going to get? we've only been married for 2 months! :) ha ha!

listening

2009-09-02T17:19:00.000-07:00

last night, jeramy and i began reading a Christian marriage book together. we decided to sit down over dinner and have a meaningful conversation about marriage and the way that GOD intended it. the book we began reading is called "love life - for every married couple". the idea of doing this meant so much to me and so much to jeramy. it was great to be able to prioritize time like this with one another. we decided to take turns reading it aloud. we chose to do it this way because we heard that as you read something aloud, you can retain much more of its information. i had heard this in a sermon one time..."read the Scriptures aloud". so we began doing just that. i read first...then i kept reading, kept reading, and kept reading. the idea of taking turns was great but there was something that kept me from handing the book to my husband. what the heck!? as jeramy kindly asked to read the next chapter, i felt a sense of hesitancy come over me. i sincerely wanted to equally participate and i was so disappointed in myself for hogging the entire first chapter. then it hit me! i realized that i didn't want jeramy to read because that would mean that i would have to listen. i am one of those people who can retain so much information in things i read....again, things i read. i began to notice that i have awful listening skills!!! so, i handed the book over to my hubby and began to actively listen to the powerful words and Scriptures that he was reading. it was so, so hard! looking back on last night, tons of thoughts began to overtake me! i realized that marriage is also meant to keep me humble! i know that GOD had that come to my attention last night and will use my and jeramy's time together to help grow me. i recognize what He is trying to do. however, even though i recognize what He is going to do during this stage in my life, i feel like i am fighting against my actual willingness to let Him. it's so weird to think that i have been like this my whole life and i am thankful for the obvious reminder to actually fix it. gosh, i really want to fix it.

God, please help me to be teachable. help me have a heart that is open and willing to let You use me, mold me, and show me what it really means to listen...just listen. not interject my own thoughts and feelings because i feel the need to be heard. help me see the power of what might happen if i just listen.

where's buddha?

2009-09-01T18:19:00.000-07:00

so, i thought this was super funny...judge for yourself...

each year, i develop a list of responsibilities for the students in my classroom. some of those jobs/responsibilities include the line leader, the door holder, the germ catcher, the caboose, etc. Today, while assigning these jobs, i realized that the child who was supposed to be the caboose was absent. apparently, a little boy in my class realized it at the same moment. he began shouting, "can i be the buddhist? can i be the buddhist? i'll be a good buddhist...i'll be the buddhist in line. please!" i had no idea what he was asking me until i put it together. i kept trying to explain to him that it is called the caboose. don't think he really got it because at parent pick up, after giving me a hug goodbye, he told me, "thank you for letting me be the buddhist. i had so much fun!" after a day like that, how can i not LOVE my job?!

wedding overview

2009-08-30T14:13:00.000-07:00

like most little girls, i had the wedding of my dreams planned out since i was in grade school. although, in the early 90s, my dream wedding was an all denim wedding...i know...pretty awful right? you'll be happy to know that there was NO denim anywhere near our wedding and even without it, it proved to be the most perfect day.

planning a wedding in such a short amount of time proved to be a little bit of a challenge. i think i would be okay if i never had to tie another bow again! my poor husband...he offered to help, but let's be real...i am so much of a type A person that once i saw his attempt to tie a bow, i told him that it was "sweet of him to offer, but that i would do the bows". in code, that means, "there is no way i am letting the bows on our programs look like that!" so, despite my craziness and anal personality, everything turned out perfect.

i thank GOD for providing so many wonderful people who helped out with all of the details. it wouldn't have been as great without them.

Here are a few pictures from that perfect day...

"for I know the plans I have for you declares the LORD. plans to prosper you and not to harm you. plans to give you hope and a future." Jeremiah 29:11

GOD, thank you so much for orchestrating the events in my life to bring me to this place...to this man. i trust in YOUR plan for my life...not in my timing, but YOURS. thanks for always proving Yourself to be so faithful. amen.

new beginnings

2009-08-28T19:45:00.000-07:00

i have always wanted to start a blog and now that i am married, i figured that right now is the best time. my hope is that this will be a great way to let you guys all know what is going on in and around our lives. GOD sure is doing a lot for Jeramy and me right now. so much is new, hence the title "new beginnings". we just got married, have a new home, and are learning what it means to show the love of Christ through our relationship with one another. thankfully, i have a wonderful husband who turned out to be quite the Godly leader. it is so awesome to watch him grow in his faith. truth is...it inspires me to do the same. my favorite thing is to come home from work and see GOD's Word open on our counter, knowing that he has been looking to it all day long. now, please note the "when i come home from work" in the previous sentence. that is because this is not likely to happen in the morning. i leave way to early and he is still sound asleep. as i leave in the morning, i look over and see him sleeping so peacefully......and i am instantly jealous. :) i know as the weather gets colder in the morning, i am going to want to stay in bed. something tells me i am going to be even more jealous than i am now! ha ha!

again, i hope that you enjoy the blog and get to know our family in a more intimate way!