sedona

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

gavin ready for the cold weather

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

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

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

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

eye surgery follow-up

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

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

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

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

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

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

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

love him so much!

quick little update

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

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

my little monkey :)

at the pumpkin patch

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

gavin and daddy

love my boys!

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

gavin playing the piano with g.g. and asher

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

me and christy in yosemite - sisters!

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

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

the 3 of us at the giants stadium in san fransisco

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

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

 gavin with santa :)

snuggle time with grandpa

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

all ready to go

what a fun night!

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

here's to 2012!

tough guy

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.