Wednesday, July 27, 2011

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.

Friday, July 22, 2011

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.


Tuesday, July 19, 2011

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...

Saturday, July 16, 2011

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?

Friday, July 15, 2011

under construction

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


Thursday, July 14, 2011

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.