So slow...if you blink you might miss it. But it's definaltey getting better, and we'll take every little bit of progress that comes Bela's way...
Anyway, I keep thinking I'm going to get some time here or there to write a good post on the happenings around here, but the time just never seems to come. So I'll use whatever little time I have left before Bela wakes up to write a little something. It's been a hard, sometimes very frusterating week. Bela is supposed to be getting better, but somedays it feels like she's getting worse! She still continues to throw up, about the same amount if not more than before. We took her off formula because it got to a point where she just wasn't keeping anything down and she seems to do much better with just breast milk. I add a little rice cereal to the milk since she should be eating that now. She throws up still, but seems to keep much more of it down. I feed her every hour for 15-20 minutes so it seems like its all I do! Especially when she throws it up...I get her cleaned up and do it all over again. We have seen improvements in the last few days since we made the change so I hope she can keep that up. We got her off all her medications that she was addicted to just a few days ago and I've noticed lots of improvements since then too. She still isn't sleeping very good and I'm sure it has a lot to do with the throwing up since she is never full and content. She takes maybe two 15 minute naps all day. I try soo hard to get her to sleep, then 15 minutes later something wakes her up, whether it's to throw up or because she's in some kind of pain. I hope that gets better, for all our sakes. She just likes to be held and walking around, so it gets very tiring, and by the afternoon she is just so exhausted. She is still sleeping okay at night, she does wake up and throw up sometimes, but she sleeps pretty good. We're heading in the right direction, it's just a long road...
It's still just so wonderful to have her here, although she is my drama queen and is extremely high maintenance, she is an angel and we love her to death. She has the ability to just comptletley melt your heart with her smiles..
We have our second apt. with the cardiologist tomorrow since the surgery and I hope we get all good news. I think we will...she seems to be recovering little by little. Her coloring looks much better and her breathing sounds better too. She paralyzed a vocal chord while intubated so she still sounds hoarse, but it'll come back on it's own in a few more weeks. She probably won't have gained much weight from all the throwing up, but as long as her heart function is good, all is well. We'll work on the feeding issues.
SHe's started some therapies, but they don't do much work with her yet since she is still in recovery and has some serious stranger anxiety...wonder why. HOpefully we can start speech therapy soon and get her eating even a teaspoon orally. That would be a start!
So we're doing good...in survival mode most days, but we are getting through and are being blessed along the way with some very sweet blessings. Thank you for being concerned with us, lots of people have called and asked how things are since I haven't posted. It's really hard to get around to updating when she dosn't sleep, so I'm either feeding her or holding her pacing the house... sitting does not work for her. It'll be a great day when I can sit down again..:)
Thanks for all your continued help to us...I know it's been 7 months, but we are still grateful for any help we can get!
Hey...that turned out to be a pretty lengthy post! Til next time, here's some pictures of the last couple weeks...
this is probably my favorite picture...she loves her brother..
and her brother loves her. It is so nice to not be so scared to let Benson get close to her for fear of her getting sick.
I realize there are a lot of bumbo pictures, but she is just too darn cute in that thing.. She only lasts for about 3 minutes before she decided she'd like to be held again, but it's a start..
My brother Jordan and his wife Lauren welcomed their first baby into the world last Friday. I got to be there for the birth and it was a very emotional experience for me. He is just beautiful and perfect. I was amazed the whole time at how calm everything seemed to be and I decided that I'd like to do it that way next time I deliver..:)
Benson likes to be 'just like Daddy!'
Her tiny little hands and feet... But look! Her arms are filling out a little! :) I love how she looks posed for these pics.