Thank you ladies. Now that I've had some sleep and we've had a few more tests, some answers...
Dx: Coarctation of the Aorta. It's a narrowing of the Aorta which basically pinches off blood flow to the lower half of the body. We were very lucky we caught it, as Kidney failure, Liver failure and necrosis of the bowel are not uncommon before finding the problem. She is still in excellent health, albeit hypertensive, but none of her organs have been damaged at this point. The drugs they have her on were to prevent the cardiac ducts from closing further (they close in the first couple weeks pp). They haven't opened back up completely, but they did dilate a bit, so she has more blood flow, so they're letting her rest a few days so her heart doesn't have to work so hard.
From here: Open heart surgery is scheduled for Friday. She will have to be on a heart/lung bypass machine while they repair her heart. But the prognosis is very promising, especially since she's still so healthy. In about 10% of cases they will need further surgery down the road, but in 90% the initial repair is all they need. If the repair doesn't grow appropriately with her, then she may need to have it repaired a 2nd time when she's older. She'll be monitored annually to make sure everything is going well.
At this point our friends and family are rallying around us. My dad drove down around 1 am last night to crash on our couch so he could watch DS today so we could be at the hospital. Nonna is taking tomorrow off work to come watch DS so we can meet with the surgical team. We haven't figured out who's going to watch him Friday while we're at the hospital, but someone will. And the 3rd set of grandparents said if we need them on a plane to let them know and they'll get on a plane. DH's work told him to take whatever time he needs, even though his leave is supposed to be up on Monday, he'll be WFH as he can, probably PT, while I'm in the hospital with E. And as petty as it seems to worry about it right now, it looks like our insurance is going to cover the bulk of this - we'll be getting confirmation in the next couple of days.
Ok, I need to eat dinner and go pump. She's not allowed to eat until after surgery, so I'm going to have to work to keep what little milk I have until Saturday.
ETA: Lindsay - I could stay with her, since parents are allowed in Children's 24/7, but she's not in a room, she's in the ICN (Intensive Care Nursery), and she's hooked up to so many tubes and monitors that even holding her is difficult.
Edited by cristeen - 6/12/12 at 9:42pm