Tuesday, August 17, 2010

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.


Monday, August 2, 2010

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!!