The woman who was my prenatal yoga teacher has another student who is about to have a baby, and they know that their baby will be going to the NICU for a heart condition. Jessica gave her my contact information in case I could offer her any words of advice. I don't think there is really any advice anyone can give in a situation like that, but I listed a few things. I think if I had been in her situation, I would not have appreciated any advice so I tried to keep it pretty general and not too preachy. I decided to put it on the blog in case I have to go through this again (please God, no, no, no!), or in case anyone stumbles across it from a google search. If anyone wants to add anything, please let me know.
1. Don't let the downs completely take you out. They are to be expected. The nurses and doctors were WONDERFUL, but I would get a little frustrated with them when they did not take the "downs" seriously. I thought when Molly was having a bad day, it was a huge deal, but sometimes they didn't make a big deal out of it. I slowly began to realize that was not because they didn't care; it was because it was all part of the recovery period, and they knew Molly was on the path to being a healthy baby. I have said numerous times that if there really are angels on earth, the NICU nurses are certainly true angels.
2. I'm not sure how it works at UCSF, but at Alta Bates and at Children's Hospital Oakland, parents are encouraged to pick primary nurses who will care for their baby whenever they are working. Take advantage of this. All the nurses are absolutely competent and take good care of the baby, but pick a nurse who will take care of YOU and your partner. It was a huge help for us to have primary nurses who were very communicative with us and who also talked to us like regular people (i.e., talked about their own kids and what they were doing over the weekend, etc.). You will be spending a lot of time with them so you want to have someone you are comfortable with.
3. Ask any questions you can of the nurses. They were a wonderful help with breastfeeding, bathing, changing diapers, teaching us how to take Molly's temperature, baby massage, anything! I would feel like I was bothering them at first (especially with the breastfeeding because that took some time, and we had a lot of trouble getting that going because Molly was so early), but they are happy to help and they are full of useful advice. It was sort of like we had our own private parenting class and were able to ease into baby care.
4. Go home at night and sleep. I felt horrible guilt about leaving Molly at the hospital, not to mention utter sadness at being away from her when we would go home at night. I admit I didn't do well on taking my own advice here, but sleeping and eating well are absolutely imperative for keeping up your spirits, energy, and milk supply.
5. And, yes, get caught up on all the novels you have been wanting to read. There will be (hopefully) a lot of down time where your baby will be sleeping peacefully so you can just relax close by your baby's bed and read and rest.