tough guy

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!

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

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

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

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?

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

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

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

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

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

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

thanks!

where do i start?

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

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

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...

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

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!

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!

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

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,