It's a new day and we're full of hope. We got to the hospital at about 8 am after sleeping for *9* hours at home while my Mom stayed in the hospital with Simon. He slept really well last night with one little glitch that is kind of funny. My mom said that at one point last night, she woke up to alarms going and a bit of commotion next to her, at his bed. She didn't even look over, but just sat up and announced "He doesn't LIKE that side". She knew they had tried to lie him on his left side, which he hates. He stopped breathing (I imagine it like the pissed off 3 year old holding their breath until they get their way) and was kicking like hell.
They let it ride for about 20 minutes and then readjusted him. He quieted down immediately. My mom wanted to say "I told you so" but kept her mouth shut :-)
This morning he is completely breathing on his own, at a normal pace but still through the breathing tube. It's pretty impressive when I think about it because he's actually breathing through a skinny little straw, so when they take the tube out, it will be that much easier for him. He's totally off his sedation and pain meds and is really quite content. He's awake and kicking his legs a bit but not frantically, just like normal, active baby. The cardiologist, Dr. Patel, not Mr. Hunkypants (Dr. Rosenfeld) actually gave an eyebrow raise when he said "he's doing well", like he couldn't believe quite how well he was doing. That's the first time a doctor has said something like that since we got here.
Once the tube is out and can stay out, we will get to hold him. He'll have to be on a pillow since he still has a line in his jugular vein on the right side and an IV in his right hand and leg, but we can hold him. Amen.
We've had the most incredible outpouring of support. I just got an email from a woman I don't know, from a listserv I'm on, who is in a singing group that comes to Children's to sing for kids and their families. They want to come sing for Simon. We're going to check with the nurses today to see if we can have a visit from them and get video of it.
Laura has heard from people she hasn't talked to in years...it's been so sweet.
So now we wait until the extubation happens and *don't* hold our breath :-)