June 14

Finally got a call from Dr. Black, her surgeon-- we are now on the same page that the goal for her gap is about 1cm before the repair would ideally be done. The rumors I had heard of 2cm were an absolute max, kind of a worst case thing-- if it is true that she grows about 1cm per month, then that would put us around the first of August. I later learned that Dr Black called me not because of my several previous messages through the nurses and NPs, but because when he stopped at the bedside that day our primary nurse asked him to call me.

The other baby who had his repair on Sunday May 30, Sawyer Grow, is *almost* but not quite ready to go home. His surgery was a success, but he is still too afraid to swallow milk-- this was a disappointment to (of course his parents and to) us, because he has had such a similar situation to Audrey and we have considered him a sort of "watch and learn" example for what we may go through. He too had a great suck reflex and no problem swallowing his saliva, but somehow swallowing milk is too scary for him. They were preparing to take him home with tube feeds, something we may end up with for Audrey until she learns to eat too, but one other setback has kept them here a few extra days. One sad side effect of surgery on babies is that they often become addicted to morphine, and he is still weaning off the painkiller. Sawyer's mom says that if she could have it to do again, she would have pushed to give him tastes of milk on his pacifier and to do the non-nutritive breastfeeding on a consistent basis. She feels like he has lost his rooting instinct and strongly encouraged me to work consistently with Audrey. Starting today I am going to do skin to skin time every morning for part of my visit, hoping she will learn to "nurse" over time.