Happy to report she is home as of Friday, which was 6 days post surgery.  In the time since coming home she has ceased waking up with a jolt, crying, something she never did before.  It took one night of sleeping right next to her mother for that to stop.  She is feeding a lot, and looking more energetic, though I didn't think she was alarmingly sedate before.  Her activity level much resembled that of her mother, who did not have any heart problems and was just a calm baby.  I think she is able to enjoy breastfeeding even more now that it is not putting her in conflict with her need to breathe. But even before, she always seemed to like it.
She has not spluttered or choked or vomited since resuming breastfeeding post operatively, until this evening when after cluster feeding on one side for several hours she was offered the other breast.  Suckled and suckled, stopped and what seemed like 'all' the milk just came bouncing back and out.  Turns out she was filling her diaper at the same time and the pressure seems to have been just enough to squeeze milk back up again.  She was unruffled by it and fed again shortly thereafter.  
She was in the hospital for 9 days in all.  Had the surgery on the third day after coming in, did not have any milk for nearly 24 hours while on the respirator, started slowly with small boluses by NG tube, and progressed quickly to breastfeeding again by day 3 post op.  After her fluid restrictions, necessitated by some pulmonary edema after surgery, were lifted, she has been feeding ad lib.  Her discharge weight was about 3 oz higher than her admission weight, and there is nothing to suggest that her admission weight was inflated by edema fluid.  She was not edematous until after surgery, and then not very.  So, she has been gaining right through all this, probably because the food she was getting was eminently well-suited to meet her needs.  
Because this hospitalization was mercifully short, and she and her parents had such a solid foundation through their first month together, I don't think it has been anywhere near as traumatic as when a serious problem arises immediately after birth.  And it is a big help that her condition can be treated with a single surgery and has a good prognosis, so relatively speaking we have all gotten off easy, there are plenty of worse things that can happen.
Can't say enough how glad I am that BF was established and going well already - nor how glad I am that she was born in a way that truly empowered her mother and father both, to get them started on their lives as parents.  Did not dream they would need such strength so soon and was impressed to see how my daughter showed her strength when it came to questions about how to provide for her daughter's basic needs.
For me it has been another reminder of how incompatible the institutional culture of a hospital is with attachment parenting, despite the many many staff people who really gave superb care to them all.   My daughter and I may just collaborate on an inservice for the hospital about empowering vs disempowering care.  I think she could get the message across better than I could.   In any case, it won't be next week!  
Thanks for the supportive and caring e-mails you have sent in response to the case report itself.  They mean a lot.  

Rachel Myr
Kristiansand, Norway

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