Today has been a little up and down. We were woken up around 4:30 because Bela was having a little crisis. Her heart rate should be in the 120's or so and it was about 210 for awhile. No one knew what was going on or why it was so high. That's the worst part. They gave her a drug that stops the heart for just a second, in hopes that it will start beating again right away with a better, slower rythm. They had the pacer wires all ready to start her heart again for her if it didn't start back up on it's own but thankfully it did. It jumped right back up however to the low 200's. The tension in the room was thick, or maybe I was just so nervous that's how it felt. We're not sure what is provoking these scary periods for her. Her heart rate has slowly been making its way down all day today, right now it is about 140, so the rest of the day has been much better. At one point a few hours ago her saturations came down again, not as low as yesterday, but they had to bag her for awhile (give her some manual breaths), and that helped her get them back up. The rest of the day has gone by pretty smoothly. We're still a little on edge though since they seem to come on so suddenly. Her goal for right now is to just stay calm and get some of the fluid off her. She is more puffy today as you can tell from the pictures, which is totally normal, but she should start to get rid of some of it now. She has been peeing a lot better this afternoon which is really good. Pray that she'll keep peeing good, because once she gets more fluid off we can hopefully move forward with weaning her ventilator settings, but it'll probably be a very slow process. That's okay though, whatever Bela needs right now, but I can't even say how hard it is so see her this way. I had a little cry today with another mommy of a baby that just had the same surgery as Bel, and we both were saying how much harder this time around is since we got our babies at home for awhile and know the lively, smiley version of them and not the one we see before us now. It's hard. I look at her and know it's Bela, but I don't see my Bela in that face. It's just so hard to see her so 'lifeless'. It's an aweful feeling, and I really have to not let myself think too much about it or it's too much. I just pray that she's not scared or hurting. I know that this time will pass, but when you're in it it seems like it never will. We're so proud of her though, she has been through so much and is doing so well. She has really liked to be sung to today.
They are doing an echo right now to look at her left pulmonary artery because it is a little small because of the band the was around it. I'm not sure what that means right now, but I'll find out soon I'm sure when they come talk to me. It worries me a little that they wanted to get another look because they just did one this morning. But then again, what isn't worrying me right now? People have been asking how I'm doing through all this.. Well, as you can probably imagine, not too great. But I'm trying to keep it inside, and keep the feeling in Bela's room calm and peaceful, like she needs right now. She knows that I'm right here and that I'm so happy with her and proud of what she is doing. Sometimes I'm better than other times, and I really do try and not think too much. I know that sounds wierd, but I can't let myself do that. It is incredibly difficult to see your baby go through so much. I remember coming to tour the floor before Bela was born and thinking that there was no way I could see my baby that way. But when it's happening, you just do what you have to do I guess.
I appreciate SO much all your comments. They bring me to tears most of the time. I'm especially grateful to all the heart moms out there who have been so supportive and encouraging to me through all this. It's comforting to know that others know exactly what we're feeling and going through, and that it does get better.
We are so especially grateful at this time for our faith and for the knowledge that families are forever. I am grateful that she is mine forever, and that I have a loving Savior that is helping us through this. I really do feel Him near.
Here's some pictures from today. We are almost through the first 48 hours, but I'm not feeling too much relief yet...if anything a little more nervous, but we are hanging in there. Things could definatley be going much worse, so there is a lot to be grateful for right now. She is doing very well for two days post-op.