Pardon the interruption -- Goldenleaves has given me some good advice and I thought I'd pass my experience on.
Be prepared for A LOT of information, a lot of waiting, and a lot of doctor's appointments. Between the info and the pain meds, my head was spinning. Make sure your SO has a clear head or someone to take notes.
We had no idea that DD had ds and the AV Canal defect until she was born. Docs saw some soft markers and did the echo just to check and found the AV, plus she was a sleepy baby and it took about 6 hours before she was ready to eat. Put that all together and LO ended up in the NICU for 5 days. She was put on a heart and sleep apnea monitor, under special lights for jaundice, and we had to go down to feed her every 3 hours. (You don't HAVE to but we wanted to.) However, NICU wants an EXACT measurement of what baby eats so if I BF, she didn't get credit for eating that much and we had to supliment with formula (which I hated). They wanted a minimum of ml consumed and a record of all dirty diapers and types. We probably would have gotten out earlier but we had to wait until the geneticist signed off for the bloodwork to be drawn for a chromosomal test to confirm ds and it was the Thanksgiving weekend.
LO is just shy of 4 weeks and is stable for now. She's gained weight (which is basically what our docs told us they wanted), and her lungs are still clear. Right now we're in a waiting game. We have to watch for what Greenleaves was talking about the (panting, sweating, etc). Which is probably going to start happening in the next few weeks and we'll get back with the cardiologist to start her on Lasiks (sp?) to dry out her lungs. Then if she tolerates the meds, we're looking at heart surgery at 4-6 months.
BTW - DD sleeps in a bassinet in our room...she's a loud breather too! Makes FTP very nervous.