Sleep eludes me. Hence the 12:35AM post.
I had planned on getting some sleep and then updating in the morning, but now is as good a time as any!
Juliet is doing very well. She came out of surgery just fine. As posted earlier there was a hole still in her ventricular septum that needed to be repaired, so at the end of her surgery they put her back on bypass and repaired it again. When they did her echocardiogram there was just a tiny hole left, and it is small enough that in most children such a size of hole closes on its own. Even if it doesn't heal on it's own it's not something that would cause a future surgery- it just bothered Dr Burch that he didn't get the whole thing. He explained that with how small she is, being a newborn, that it's very hard to do the repair down in that section and that they did do enough to where it would be no problem for her.
He feels confident in the alignment of the coronary arteries, so I infer that that means there is little risk for stenosis there.
Other good news! She was in good enough condition to try closing her up. Her swelling was not a huge amount, and so they closed her chest and will wait and see how things go. If the swelling increases they will have to reopen it and leave it that way until the swelling is down, but for now things look peachy. There have been no big signs of arrhythmia, so she is basically doing things totally textbook for them.
After he spoke to us we went to go eat (since it would be unlikely we'd feel like it after seeing her in her current condition). We went back to the Ronald McDonald House to eat the meal that volunteers were cooking for us (I think it was the university, I'll double check another time) and it was excellent lasagna, salad and breadsticks. We gathered up a few items to stay overnight in one of the PICU sleeping rooms and headed back.
We timed it perfectly. We got back right at the beginning of shift change and could not see our girl :-/ So we went and played Nertz (sp?) for an hour. Matt kicked our trash, just like he did when we played while waiting for the surgery to end. Card games are such a good way to take your mind off of things....
Finally we went in and saw her. I had tried to prepare myself, gone over what I'd see in my head over and over- I even imagined it would be worse than it really was. None of it helped. I don't really cry much, or easily, but I found myself crying again.
She is pale and limp, swollen (but not as much as I thought), and very chilly to the touch. There is a patch on her chest and chords coming from the patches. These are pacemaker leads. There are small drainage tubes one either side of her chest and one large one draining from the bottom. There's another tube that drains another kind of fluid (totally forget on this, they said it is kind of like plasma) and she's hooked up to something like 12 infusions through her IV's. There's still central lines going into her umbilical, and they plan to remove those tomorrow (today).
Of course, she's intubated. She's not breathing at all on her own right now, but that is because she is completely sedated and the anesthesia of course has residual effects. She's on a muscle relaxer, a pain reliever and on aspirin for blood thinning. Tomorrow they will begin slowly letting her regain some consciousness, but not so much that she can cause damage to her chords from movement. She twitches a finger or toe occasionally, but that is all.
We have taken pictures, and we will post them soon. Maybe even this morning.
My mom went back to the RV to sleep. She's been so tired and stressed from all this, at least as much as I am. She's not feeling well and has a lot of aches in her body- so please add her health to your many wonderful prayers.
The most critical time for Juliet is this first 48 hours. That's why we are staying here at the hospital, because if she goes downhill they want us right here. Scary stuff. Well... Off to try to sleep.