Bela Girl

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 ...

I've had lots of worries on my mind this week. I think I had this plan in my head that after we came home from the hospital after the Glenn that things would be 100% different. But I forgot about that fun period that lasts about 2 months called recovery. Normally we're in the hopsital for all of the recovery period and then some, but this time we are definatley doing the recovering at home. Which is good, and bad. It's hard to watch her go through withdrawals. She shakes and vomits and just looks downright scared. We came down on the dose a bit and it made things worse, she has been throwing up every feed since, so we have to go back up.. It's a little discouraging since we don't get our Bela back until those meds are gone. IT's okay though, we just have to move a little bit slower. Her breathing has been very loud and it seems sometimes like she is trying so hard to breathe. Her oxygen sats have dipped into the 60's when she gets really agitated an...

Some of you might already be aware of this, but we are home! We got discharged last night and have been busy adjusting to life at home again with new meds, schedules, and drs orders, but we've been LOVING being together. I woke up this morning and immediatley smiled, knowing that both my babies were asleep in their own beds in their own rooms. Tanner and I are actually still having a hard time believing that this is all real, that we are really home after two short weeks. What was supposed to be her most difficult surgery and recovery actually turned out to be the shortest stay we've had so far. I feel like someone is going to call and say 'just kidding' any time now and we'll be back in room 10 in the ICU.. I just can't believe how well she did and how fast she recovered from such a major surgery. We weren't quite sure what to expect, but this was definatley not it. The only way to explain what happened I'm sure were the countless prayers offere...

Since pictures say a thousand words, I think these will convey to you HOW MUCH BETTER our little Bela has gotten over the weekend! Sunday and Monday have been very tough withdrawal days for her, but today they seem to be getting a little better. Probably because yesterday they decided to give her more meds for a couple days and then try to slowly wean again. She couldn't handle coming off them the first time. She couldn't stop her little body from shaking and kicking, her eyes were plastered open, and she is doing this weird hacking, gaging thing and keeps throwing up her feeds. It's been really hard to watch her go through them, but they are definatley a part of heart surgery. After you get your heart fixed, you go through drug rehab. So now we just work on getting little miss Bela off her drugs (we'll probably still come home on some and continue weaning from here), and then get feeds figured out and we'll be able to come home! She had a lung profusion stud...

Dad here... Bela has had another great day. She has slept most of the day and for the most part has remained pretty calm. We found out today about 2 other HLHS and Turner's babies that were born and passed away within the last month or so. We count our many blessings and were again reminded that Bela is an absolute miracle. I am constantly asked by friends, neighbors, and even business associates, how she is doing. I usually struggle to explain what she has been through or is going through that day, but now I know my response, MIRACULOUS! Today they took out Bela's art line and hopefully tomorrow the central line will get taken out. Another good day. Avery was able to hold Bela for the first time in 11 days. Tomorrow will be my turn.

First and foremost...The tube is out!!! For awhile there I was a little nervous about reintubation, so I didn't want to post that she had gotten it out, only to repost an hour later saying it was back in. But it has now been out since around 5 pm last night, so it is out for good!! They were keeping a very close eye on her last night because she sounded pretty wheezy and was very agitated, but she settled down and pulled through once again! Last night we kept trying to give her her binky but she didn't want anything to do with something being in her mouth again, but today she has remembered what it is and how much she loves it. I don't think it's been out of her mouth all day. She finally got to eat again, although it's going pretty slow right now. She went without eating from yesterday morning at 6 a.m. until about 11 a.m. today.. Terrible, I know. But she was soo good about it. She is always good about everything she has to go through. She's made up...

The ups and downs continue, but for the last 20 hours or so she's been a little angel. She hasn't been naughty at all... I told her that even though she dosn't feel good and she might be angry and confused, it's very naughty to just hold your breath until you turn blue. I really hope she listened and is done with that. They've come down some on her sedation and every now and then she'll open her eyes and look around for a few minutes before drifting off back to sleep. She isn't getting as angry or agitated as she was before when they do their assessments.. Please, please pray that she will continue like that instead of getting so mad she refuses to breathe and has more of her little episodes. They said if she has a good night tonight, they can start weaning some of her ventilator settings and GET THAT TUBE OUT!! I'm so ready for it to be gone beacuse I miss my little girl so much! I miss seeing her eyes and her smile and seeing her kick with excite...

Dad here... Avery and I both spent the night at the hospital. I won't complain because Avery does it every night and doesn't. I always tell Avery that someone is going to creates a Marvel super hero character after her. She is amazing! Right after Avery posted last night, Bela's oxygen saturations dropped and she clamped against the resperator. She turned really blue and they had to override the resperator and manually give her breathes. My mom and brother were here to experience a glimpse of the anxiety that we go through. It was relatively mild compared to other times, but nontheless it stressed us all out. She had two more of those episodes during the night. Aside from the fact that we constantly worry about Bela, sleeping here is not very accomodating. I would like to compare it to sleeping through the night with your alarm clock going off every five minutes expect that the alarm is associated to your daughter and you can't just press snooze and go back to...