Monday, April 25, 2011

Davis's first Easter

After our unexpected stay in the hospital for a few days, we were thrilled to be out early and able to spend the day with family.  Typically we'd spend the holiday up in Evergreen, but because Davis is still on oxygen we decided to play it safe and have Easter in Denver this year.  So we all met over at Jason's loft and had a wonderful meal together and helped Davis celebrate his very first Easter.  He seemed to enjoy himself and was generally happy and alert most of the day. What a nice ending to a wild weekend.  :)

Davis's Easter Basket

The guys were cooking.  :)

Sunday, April 24, 2011

Home sweet home

We were released from the CPCU (cardiac progressive care unit) around 1pm yesterday. Davis is doing great and we're thrilled to be home and able to join the family for Easter dinner at Jason's house today. Life is good. More details to come...with Easter photos.

Friday, April 22, 2011

Rush Rush Wait

So we finally made it out of the CICU, but unfortunately it's not to go home.  We're back up on the 9th floor for a few days before they're planning to release us.  The electrophysicist decided not to do the electrode test on Davis and opted to double his beta-blocker dose instead.  So they started that higher dose today and want to monitor him to be sure this doesn't drop his heart rate too low, allow other irregular rhythms to occur, or cause any other side effects. But if this doesn't work, we'll be back...and they'll probably want to switch him to a different/stronger drug that will have more side effects.  So we're keeping our fingers crossed that this double dose of Propranalol will do the trick.  Other than this, there is really not much going on.  We're just hanging out with Davis in our private room, and waiting.  They are now saying that maybe Sunday we will be discharged.  So my goal is to convince them to release us as early as possible so we can still make it to Jason's loft for the family Easter dinner.  If not, I think the family will be coming here for a holiday celebration in the cafeteria.  Either way it will be fun to be together.  Davis may be tiny, but he calls the shots around here.  :)
Hanging out on the 9th floor

Thursday, April 21, 2011

CICU Reunion, continued...

After a full day in the CICU, Davis is doing really well.  He came a long way from the state he was in this morning.  Our nurse today said she's never seen a turn around so fast, and now his blood tests are reading perfectly.  So evidently, he just needed to be snapped out of his SVT arrhythmia pattern (this is what they are thinking he experienced), and then get some extra help to stabilize again.  We were only in the ER for about an hour before we came up to the oh so familiar CICU.  Somehow, despite the problems that brought us back, it was strangely comfortable to be back at the place where they know Davis and how to care for him best.  There was a sense of relief once we got up here and the docs/nurses took over.  They are just amazing here and always seem to know what to do. So as I type, Davis has been extubated and is being held by Kelly after getting some much appreciated milk.  He hadn't eaten since 10:30 last night, so his belly was totally empty.  I think he's perfectly content now, full belly and dad's warm arms to hold him.  :) So tomorrow we'll be back to talk with the EP (electrophysicist) to discuss his arrhythmia, look at all his echo scans/EKGs and potentially do a small trial where they put an electrode down his throat where it sits next to his heart and they can then monitor his electrical activity patterns of his heart.  The goal is to figure out what he experienced and how to prevent it from happening again with medication.  Once this is under control, we will be discharged...again.  Stay tuned.
perfectly content

The nurse checking his heart

CICU Reunion

It was a tough night for Davis that ended up in an ER visit and re-admittance to the CICU ward at Children's Hospital at 4am.  He woke up very early this morning crying heavily with no appetite and his skin was cool to the touch.  We hooked him up to some monitors we have at the house and found his heart rate to be consistently elevated, so we hopped in the car and headed for the ER at Children's.  We left just in time as he began going downhill once we got to the hospital and was very pale with rapid heavy breathing.  They intubated him once again so he is back on the ventilator but we were told this was temporary to help him stabilize.  With his heart issue he was struggling to get back to where he should be after they corrected his heartbeat.  He is looking much better now and everyone in the CICU is happy with the direction he is heading.  We, and they, are hoping this wont turn into a long visit, hopefully not even overnight.  We will update later when we know more.

Wednesday, April 20, 2011

Growing, growing, growing

Davis has had a great week full of eating, sleeping, growing and making a lot of dirty diapers.  :)  We have been working hard on his feeding, giving him more fortified bottles and lots of breast feeding to get him optimal calories.  We felt like things were going pretty well and thought we saw some weight gain just by looking at Davis.  So yesterday we had our apt with the cardiologist at Children's and they confirmed that he had gained 29 grams/day last week!  That's a huge jump from the week before when he was gaining 13 grams/day.  He now weighs 7lbs 8oz, and is following the growth curve just as they'd like him too. So they were very pleased with his progress and told us to just keep doing what we were doing.  I asked them about his oxygen and what the long term plan was for that.  Basically, they like to keep that going for the first 3 months of his life, to support his lung growth in this critical time.  So, one more month to go!  And they also gave us the green light to take him up to Evergreen for short visits (a day), which is great news.  We'll have to turn up the oxygen he's getting to take him to elevation, an they said not to stay there for more than a day or so since this will put added stress on his lungs.  But at least we know this is an option.  We are already looking forward to taking Davis to grandma/grandpa's house to show him the woods, the stream, and all the fun stuff he has up there.  This will also provide a nice escape for Kelly and I...a change of scenery...and an opportunity to spend more time with grandpa and nana.  We also had an apt with the audiology dept yesterday to check Davis's hearing.  This is typically done to all children before they leave the hospital, but with all the other stuff going on, this never happened.  The test was about 10 min, and he had to be asleep.  They put little electrode stickers behind each ear and one on his forehead and monitored his brain waves as the played sounds in his ears.  He passed with flying colors, and seems to hear perfectly.  YEAH!!!  Its amazing that Davis is already 5 weeks old, and doing so well.  He has been enjoying his baths, playing on his toy mat and of course getting lots of cuddles and kisses. 
Davis taking his audiology test
One of his very uncomfortable looking sleep positions

Nap time

Strike a sleeping pose

Wednesday, April 13, 2011

Moving right along

Life with Davis continues to provide new challenges and LOTS of joy.  Kelly and I are still getting far too little sleep, but things are slowly getting better.  We have figured out how to split up the night coverage between us to provide maximum sleep for us both, and Davis seems to be slowly figuring out that night = sleep time.  He's currently sleeping about 3 hours at a time which is a big improvement from the initial 30 minutes or so.  We had another apt with the cardiologist at Children's on Tuesday and they said he's looking really good.  He is now 7lb 4oz, and they seemed very happy with all his progress.  We're still trying to find the perfect diet for him, and are currently working on giving him formula fortified bottles 4 times a day in addition to breast feeding.  These heart babies tend to burn more calories than normal, so need a little extra boost to maintain proper growth.  The good news is that Davis seems to be fairly insatiable and doesn't care if he gets a bottle, breast, breast milk or formula.  So i think we're going to be able to fatten this kid up pretty quickly.  I've been noticing small changes in his personality as well.  He LOVES the bath, so we're giving him a bath more often just to soothe him.  And just today he really interacted with a musical giraffe toy I put next to him. (thanks aunt Maureen)  He was laying there content, and once I put the toy next to him he turned his head to look at it, stared at it for a really long time and was touching it's face the whole time.  It was interesting to see him really notice the toy and show interest.  His official due date was April 11th, so maybe now that he's "full term" age, we'll start seeing more progress and change in his personality.  I can't wait.  We're looking forward to more interaction, reading him books, and eventually teaching him how to cook  :)  So this is a small step in the right direction.  He's a cuddly little guy.  He's absolutely content and usually sleeping as long as he's being held.  But trying to wake him up is nearly impossible...unless we lay him down.  Then he wakes up quickly...telling us he'd rather be held.  So far this has been a pleasure and I'm just giving him what he wants.  Luckily, he still sleeps well on his own at night.  I think the carriers are going to be right up his alley once he's big enough to use those.  I can't wait. Oh're just amazing.
The many faces while getting a bath

Wednesday, April 6, 2011

Several milestones for Davis

Aside from mom and dad being sleep deprived, all is going well at the Grimsley household. Davis has made some big steps in the right direction this week.  His umbilical cord has fallen off, which means we can now give him a "real" bath.  :)  So last night Kelly and I officially bathed him and he LOVED it!  He was very unhappy at first, being exposed and chilly.  But as soon as Kelly started pouring the warm water over him he instantly calmed down and looked extremely relaxed.  I think he's going to take after his dad in having a huge love of water.  I know Kelly's mom always says that he loved baths when he was a child and they called him "a fish" when they'd go to the beach because he wouldn't ever want to come out of the water.  :)  We also had our first appointment with the cardiologist at Children's hospital since Davis was born. Because he's gaining weight and looking so healthy, they decided to pull out his feeding tube!  It's so nice to have one less thing taped to his face now.  We still have him on the oxygen until he's able to keep his blood oxygen levels up high enough on his own, but he's not far off, so hopefully that won't be too much longer.  Davis seems to be a very happy baby so far, and just wants to be held constantly.  As soon as we set him down he starts to fuss, but can be immediately calmed down by simply picking him up. He's a very cuddly guy!  He's still not sleeping very well at night, but I think this has more to do with his need for so many calories right now, and needing to feed so often.  But we're certainly looking forward to the time when he can sleep for several hours in a row.  Till then, the night time vigil will continue.
Davis without his feeding tube and extra tape on his face

He was actually holding his own bottle!

Super relaxed after the warm water was poured on him

Kelly giving Davis a rinse

Friday, April 1, 2011

Getting used to the new routine

Being home has been wonderful, and we couldn't be any happier to be out of the hospital.  Davis also seems to love his new home and especially appreciates the lack of poking/prodding by the nurses round the clock.  Our first few nights have been fairly sleepless, but are getting better slowly.  I think Davis had his nights and days mixed up after being in the hospital, so we're working on getting that straightened out...for all our sanity. But it's nearly impossible to keep this little guy awake!  We can lift his arms, tickle his feet, talk to him, kiss his face, etc and he just doesn't budge.  I think he is used to tuning out all these things after his time in the hospital.  We also had his first apt with the his pediatrician and that went really well.  He's gained half a pound and grew 1/4" just since Monday!  They seemed happy with his progress, and he slept through the entire apt in true Davis style.  No word on when we can get rid of the oxygen, but we were told he is doing great even without it, so we're hoping it's soon.  We also haven't needed to use his feeding tube in a few days now, so that may go away soon too. We go in to see the cardiologist next week for his first check-up there as well.  I think we'll have weekly doctor's apts for a while, but it's far better than living in the hospital. Today we took our first walk with Davis using our awesome B.O.B. stroller, which was great.  Its just nice to get outside and do "normal" things with him.  Ella also loved the walk.  :)  Diana flies home tomorrow, and we're sad to see her go.  She's been a great help with Davis; holding him while we get things done, run errands, let us nap, etc.  But we're already looking forward to our next visit with her in Corolla NC in 6 months.  We're keeping our fingers crossed that Davis will be cleared to fly at that point so we can join the Grimsley's for the annual beach trip.  For now, we'll continue working on plumping up the little guy and getting more rest.
Early morning cuddle