Addendum

Forgot to update Rory's medical status! She saw her pediatrician today (who, coincidentally has a daughter with Hirschsprung's) who knows the surgeon. We went over Rory's medical history and discussed all the next steps. Her pediatrician wants to closely monitor Rory's weight gain (she is 5lbs 10oz today) and to have her try to get her to eat more. So now we're being much more aggressive about waking her up to nurse/bottle feed (Angela was pumping the entire time so now we have a huge stockpile of breastmilk).

Rory has a LOT of appointments coming up- tomorrow she follows up with the surgeon, Thurs back to the pediatrician. Next week she follows up with them again and has an appointment for a cardiac echo (she has a benign sounding murmur that needs to be evaluated because she will be having surgery). She is tentatively scheduled for surgery on Jan 28th. Tentative because things may change depending on how she's doing- she may not be prepped enough and they may want to wait, or her weight may be an issue etc etc etc.

What surgery she will have the the recovery is also uncertain. The ideal situation is that she has a laprascopic pull through procedure (one surgery) but because its such a long segment of colon involved, they may need to do an open procedure. They may also need to do a colostomy and later revision if they are unsuccessful with the pull-through, she gets sick, or a myriad of other possibilities. So... really can't say for sure how long she will be in the hospital once she does have the surgery or what will happen afterwards. We're hoping for the best and doing what we can and we are so incredibly grateful that she is otherwise basically healthy.

We're incredibly lucky to have such great friends and family- the well wishes, thoughts, prayers and all the help we've been getting have really made such a difference. Thank you to all of you (this is not a publicly searchable blog!).