Thursday, April 16, 2009


Ryan's doing OK still.  His bilirubin is down to 12! (note that it is still very high)  maybe it was an infection or a transfusion reaction or dehydration from the dumping or the TPN or (probably) a combination--whatever.  it's down.  yahoo!  He's gaining weight too--he's actually weighing more than Nora again--they increased the calories in his TPN a few days ago and that's helped along with the fact that he's no longer loosing all his fluid from dumping like he was over the weekend.  His tube feeds are now at 8mL/hr (full feeds for him would be 13mL/hr at his current weight) and will stay that way at least until Monday assuming he doesn't start dumping again, then they'll re-evaluate on Monday. He's about 4 and a half pounds.  Have I mentioned what a sweetheart he is?  despite all that's happened, he is so content and loves being snuggled.  he wakes right up and slugs back his bottle when he gets the chance--you can really tell he would take more if he could.  he doesn't complain though.  I wish he could get held and loved on more, but he's still pretty sleepy and I really want him to get the rest he needs.  I try to hold him for one good long time each day, but he hung out with his dad today for a nice long visit and they both needed that.  No surgery date--end of May, likely--more time for his insides to heal up between surgeries.  it'll be nice to be free of the ostomy bag and all the crap that goes with it :)

Nora-also coasting along.  She took 90% of her milk today by mouth and only had to get a tiny bit tubed.  She's losing a bit of weight because she's now waking up every 3 hours to eat (she wakes up like clockwork for her meals) and eating is a lot of energy for her.   when she was on the TPN, she could just lay there all day conserving energy.  They've fortified her milk so that she's getting more calories per ounce than plain old breastmilk--it's unclear to me whether or not we'll have to give her bottles of fortified milk once she comes home.  At the first hospital we were at, we were told that about 2/3 of her feedings would need to be fortified to help with bone development, etc once we went home, at least for a few months.  Here, we are told that she might go home just breastfeeding like a regular old baby...that it depends more on her growth over the next week as she transitions to ad lib feedings and they can watch if she's gaining or not while we do that.  either way is fine--whatever's best for Nora.  plus I have a huge chest freezer (no pun intended) full of enough frozen milk to feed a small country, so we're good there, if we need to do some bottle feeding.  Anyway, I am starting to allow myself to prepare for her homecoming--I've been pretty guarded in this respect given all the infections, scary moments and watching our children nearly die more than any parent should ever have to.  It's hard to prepare, because I feel like I'm waiting for the floor to drop out from under us again but we have to force ourselves to accept the good news as good news and move on.  So, we may have our little girl home soon--just so that she can go back to the hospital with us everyday to advocate for and love on her brother.  

1 comment:

  1. Our prayers are being answered!
    We love you,

    Mom & Dad (Nana & Grandpa Wayne)