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.