Thursday, September 22, 2011

Two Steps Forward, One Step Back

This seems to be the theme around here - a little bit of progress and a little bit of a slide backwards.  Adeline's doing great post heart surgery with her healing.  She got her chest tube pulled today as well as her pacing wires which means she has no more heart lines!!  Having the chest tube gone also makes it much easier to hold her, and I'm sure she's more comfortable without it in there.  We also no longer have to listen to the sound of a waterfall from the seal on her chest tube.  She will keep her PICC line and external monitor  (basically just stickers attached to a lot of wires and a little box) until we're discharged to go home.  Compared to what all she had at one point, this is nothing. 

The biggest hurdle we're facing right now is her feeding.  She started throwing up yesterday after feeds (still through feeding tube), got better through the night, but then started throwing up again today.  It's so hard to watch her little body throw up.  Unfortunately, this is very common with heart babies.  The doctors think she still needs more time to adjust to the new formula that they have her on.  They've decided to move her back to continuous feeds so she's getting a little bit of formula constantly.  Hopefully her body can adjust to the formula, and then we'd move forward with compressing her feeds again.  Her feeds have to be compressed to an hour before she can have a swallow test done and then start to feed by bottle.  So far she hasn't thrown up recently, and we're praying for a calm night with her feeding. 

Her occupational therapist came by today, and I learned little exercises to do with her mouth to stimulate and strengthen her mouth muscles to prepare her to eat orally.  It's amazing what all they do to try and make feeding easier.  I have homework for tonight to continue to do her exercises with her.  She still loves her pacifier so hopefully when the time comes for her to finally get a bottle, she'll do well with it. 

The big excitement of Adeline's day was that she got to go on two stroller rides!  She had to go for a chest x-ray and an echo.  We wheeled her off in a stroller, and she learned there actually is life outside of a hospital room!  I can't wait to one day soon get her outside in her own stroller!  Both the x-ray and echo looked great so that's more good news.  She was also the model patient during her echo - she slept straight through it. 

My mom is here for several days, and she spent the night with Adeline last night so I could get a good night's sleep back at the house.  I feel slightly more like a normal person today, and it was just nice to get out of the hospital for a little while.  The walls in Adeline's tiny room can definitely start to close in on you.  We're now referring to her room as a fish tank.

Sorry for the lack of pictures still - my camera cord should be making it's way here tomorrow so I'll post some new pictures then.  We've decided she's a very curious little girl - always looking around with her big blue eyes.  She's also like her mommy - she doesn't want to fall asleep because she's afraid she'll miss out on something. 

Please pray for Adeline to make progress with her feeding.  It's hard to take the setbacks, but it's even harder to watch her in pain.  We just want her to feel better and for her tummy to not hurt.  Now that I am constantly focused on and worrying about her feeding, I almost forget at times that she did have open heart surgery a little over a week ago.  In the big picture, I know that is a good thing and evidence of how far we've come to be worried about her feeding now and not her heart.  Hopefully taking her back to continuous feeds will do the trick and give her a little more time before moving forward again.  I keep telling her to keep her food down because we need to fatten up her long skinny legs and put some rolls on her.  I do think that once she actually gets to eat my mouth, she'll be a big fan! 

1 comment:

  1. Still praying and thinking of you guys. Love you very much!