First, can I say it in no way seems as if its only been three days since C had surgery?! It feels like it has been FOREVER! They cut out the sedation and pain meds along with the paralytics so C is a tiny bit awake. In substantive terms, this means he wiggles, and his fingers will curl around my finger. It also means he's in baby restraints, but it doesn't bother me as much as they seem to think it would. The last thing I'd want is for him to remove one of the tubes or wires that are working to get him better right now. He's eating 12 ml/hr now on continuous feed. They are weaning down the Nitric Oxide and weaning on the vent as well. The drain is down to using bulb suction instead of the big suction device because he's got so little drainage now. He continues to go in and out of JET but he's tolerating it for the most part. He's being paced at 140 now, but when he gets into one of his JET spells and can't get out of it, they sometimes bump him to 150. This is better than the 170 he was at, and I have to remind myself its only been three days and JET can take up to 14 to resolve.
I have asked the doctors to let me know when I should start worrying and until they say I should be concerned, I'm going to continue to just coast along. On the suggestion of some other heart parents, I have brought along our video camera so we can take video of the first time we get to hold C again, I hope to be able to post it soon. Technically, I'll have to find a way to have someone post it to my account for me, because the hospital network doesn't allow access to YouTube.
I dreamt last night that I went into C's hospital room and he smiled at me. So when I woke up and realized that can't happen yet, it was really hard. I miss my happy baby, and I have this vague guilt that I handed him over to feel all this pain. I know we couldn't go much further as we were and I know the repair is the only direction we could go in, but there's no way to explain that to him, and I find that harder to take.
But every day there are fewer medicines, less tubes and more signs of life. The progress helps.