the hits just keep on coming

it has been so long since i had a chance to write last let me first say thank you for continuing to check the blog and having faith that it will, at one point, get updated again! gavin has been in and out of the hospital - we had him home from the NICU the first time for 30 hours, then rushed back to the ER and readmitted to the NICU for another 16 days - then home again with us for 10 days and back by ambulance to the ER at Banner Samaritan before being transferred to the PICU at Scottsdale Shea on September 9th.
we brought gavin home (again) last wednesday the 15th.
we had another scare over the weekend as his heart rate was tracking in the 180/190s and i couldn't seem to bring it down. he has had horrible gas from his feedings and so with that and his obvious lung disease i called everybody i could think of (pediatrician, NICU, PICU...) and the bottom line is that i didn't get a lot of direction as it's all one big cat and mouse game because nobody wants to step on anybody else's toes with telling us what to do for gavin other than "you might want to just take him into the ER."
for us, we feel torn either way: we take him in and he gets IV'd, poked prodded and a bunch of tests run plus being subjected to potential illness VS. leaving him home with us and keeping him there too long to where we put him in harms way because has no lung reserve. tracee and i just cried on the couch saturday afternoon as we experienced this dilemma. we are worn out and always on edge with what to do for him.
tracee's parents came over and helped us keep an eye on gavin saturday night. we just prayed and cried out to God for mercy and grace. tracee concluded that we should put him down and let him swing for a bit to calm down. her mommy intuition was good and gavin began to settle down and his heart rate started to come down into the 140/150s range where it should be for gavin.
he has been fighting a cold for the past few days and i think i already mentioned the gas but it really irritates him and puts him on edge for hours at a time.
tracee and i are shifting with gavin throughout the night: i typically sleep from about 10 - 1am and then she goes to sleep from about 1am - 7am and then i go back to bed for a few more hours.
saturday night, tracee was hit with her epilepsy condition that comes on when she doesn't get enough sleep and/or is stressed out. it makes her shaky and causes her to drop things. cleary with that going on, she wasn't able to care for gavin so i stayed up with him all night and allowed her to get about 9 hours of sleep. that was exactly what she needed as she felt better by 1pm on sunday afternoon. once again tracee's parents came over to help relieve us so i could go back to bed - i slept from 10am - 3pm to get caught up.
here it is monday morning and i'm back to work and tracee is home with the day nurse getting ready to take gavin to his doctor's appointments at the hospital to see the developmental pediatrician. everyday it is something: pulmonologist, pediatrician, physical therapy, evaluation appointments, etc...
pray for relief for us. pray that an end would be in sight and that we would be able to get the break we so desperately need. we are both very frustrated and ticked off at this point. i don't know what else to do and a lot of times i have no words for what we are going through. it's so painful to watch your bundle of joy suffer in front of your very eyes. we pray for very real needs like normal breathing with normal lungs. we don't pray for trivial things like a new car or a really great vacation.
i'm not sure what post traumatic stress disorder looks like but i can imagine that tracee and i are dealing with it. i can't imagine that it is any good for your body to live off of adrenaline for 6 month's straight but that is what i've been doing.  WE PRESS ON! we don't have a choice - we are fighters and we will push through the crap and get it done. gavin knows that when he cries for mommy and daddy that we are there and that we will be there every step of the way.

jeramy

ready...set...go: almost...

once again i apologize on the delay with the blog. we have had a whirlwind of activity going on since the last post. gavin was discharged from the hospital on thursday, august 12th at around noon. that momentous occasion for us was short lived. by friday evening gavin's work of breathing had increased and he wasn't settling down. as midnight approached it became apparent that we needed to take gavin to the ER as i told tracee "i don't feel equipped to be able to care for him at all." gavin was sent home on 1 liter of oxygen and by this point we had him turned up to 3 liters en route to the hospital. we were able to slide past all of the sick people in the ER (which was a huge priority and blessing for us) and within minutes people were running around and care began. gavin was very gray in color and his lips and extremities were beginning to turn blue. based on how he looked the ER doctor wanted to intubate him to which we fought and asked them to wait a few minutes. because gavin's baseline of breathing is so different than a regular baby he has a different threshhold. gavin had been turned up to 5 liters of oxygen and his sats were not coming above 78-80. It became apparent that things were seriously wrong and  i could see the scared look in his eyes. both tracee and i began to freak out although mine lasted much longer than hers. i thought i might lose my little baby boy right there on the table as people scrambled around and they brought the coding cart into his room "just in case."
at the suggestion of someone from the NICU they gave him a treatment of Albuterol and that immediately dialated his airways to where he could get the oxygen he needed. praise God!!! some of my fears were then relieved and i burst into tears when we saw a couple of staff members from the NICU who were down to grab gavin and take him back up to what we have come to know as a very safe place. because gavin had only been gone a couple of days, they were able to readmit him to the NICU. thank God!! these are the people who know everything about gavin and fight for gavin and know how to care for gavin. we were at peace knowing we didn't have to worry about explaining ourselves to a team of people who didn't know gavin!  they place gavin in an incubator and rushed him upstairs to an isolation room in the NICU and immediately got him hooked up to CPAP. side note: gavin hates CPAP and yet he didn't even care. he flopped his arms back behind his head and probably felt like a million bucks knowing he could finally breathe. that's a hard thing as a parent. we never want to relive what we went through a couple of days ago. i know that our minds and bodies are going through shock. our brains have sort of cut us off from the traumatic pain we have been going through as we attempt to unpack everything.
gavin is back in the NICU for round 2. we don't have a go home date in sight yet and everyone is on board with tweaking his cares so that we don't have a round 3. we need better monitors for home than we had before. we need better support at home than we had before. we need humidified and purified air - where we didn't have it at home before. tracee and i have to wrap our minds around the fact that we cannot just normalize this situation. we are having to mourn the loss of a typical birthing plan, typical delivery, typical baby and typical routine with baby once home. it's hard. it's painful. we are going to have to live in a bubble for months as it is almost RSV season. while RSV can really slow down a full term, healthy baby, RSV can kill gavin.
please pray for us. we need support on so many levels. if you feel led to give to us than we have an account set up for gavin at wells fargo. if you feel led to help out with meals we need to have that up and running again. this is a time in our lives where we are needy. i don't like to be in this position but i don't have much say in the matter apparently. please continue to comment and message us and reach out on facebook, etc. we love reading your comments and affirming us as we persevere.
may you all continue to be blessed in your lives and may our story and gavin's life touch you in some way or another.

jeramy

he'll be comin around the mountain when he comes...

it's been quite some time since the last post and for that we are sorry. we had to move due to our rental being short sold and so we have been scrambling over the past month to find a new home. as God would have it, He provided a great new place for us to live in and it all came together in the last hour as we finalized everything with some good friends of ours about 10 days before we had to be out of our old place! they are looking to buy a new home and they suggested out of the blue "why don't you rent our place?" well...we took them up on it and everyone kicked it into high gear to make it happen in record time. we began painting their whole place (tri level home) on thursday, july 22nd and worked late into saturday night while tracee ran off for gavin's baby shower that was hosted at some of our wonderful friend's home. last sunday we gathered some troops and rented a u-haul and got everything moved over and in. the good news is that our new place is only 5 minutes from our old one and it keeps us in the same basic area which we love! the bad news was that it was 111 out and humid so we were just getting killed all weekend.  since then it has been non-stop with projects all over the place to get things in order!  both tracee and i have been working tirelessly to make this new house a home and by gosh i think we are actually getting there.
in the midst of all of this, i continue to go to work and we continue to make our trek over to the hospital to see gavin. this thursday will be 4 months since he was born. let that sink in for a minute...4 months of visit after visit and hour after hour spent at the hospital to be with our precious baby boy. tracee and i determined we have put over 10,000 miles on our car just in trips to the hospital and back.  WE NEED A VACATION!!
gavin is doing awesome - he is now 6 pounds 15 ounces and taking over 2/3 of his daily feeds from the bottle. he is getting 60mL's of food every 3 hours and they are still pumping him full of 30cal food (rocket fuel) to help him continue to grow due to the fact that he expends sooo much energy to breathe!  since we wrote last gavin has moved completely off of CPAP and gone to the high-flow canula where he has been getting high pressure oxygen through the little prongs in his nose. this has been so exciting for us because he has absolutely loved being off of CPAP...he hated that mask! he is a much happier baby now and spends most of his time eating, sleeping and breathing...although he does find some time to play with us! he is almost 42 weeks now so he's a mature baby :-). gavin started at 4 liters of oxygen and has been weaned all the way down to 2.5 liters with continued changes on the way.
we ask for your diligent prayers to continue for his eyes as we need them to be fully vascularized. because he is on oxygen and won't come home on blended oxygen (like he gets in the NICU) they will have to switch him to 100% at a lower flow and that can mess with his blood vessels in his eyes if he isn't fully vascularized.  so....it's very important to us because we aren't sure if we can bring him home unless his eyes get to where they need to be and that's the question mark right now.
all in all, we are so pleased with gavin's progress and we thank and praise God for what He has done and how much He has healed gavin over his short, but eventful, little life. he is such a fighter and we can't wait to show him off to everybody we see - especially our faithful prayer warrior friends!!

jeramy

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!!!