perspective

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

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

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

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

jeramy

my two blessings

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

joy comes in the morning

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

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

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

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

no accident

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

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

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

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

one day at a time

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

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

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

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

big day

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

jeramy

long awaited update

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

nursery - part 1

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

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

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

3 pounds!

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

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

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

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

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

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

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

a little bit of everything

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

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

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

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

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

Great is His FAITHFULNESS!