Update

While Rory's weight continues to improve, unfortunately her dilated bowel section seems to be getting worse.  This might be happening because she is now being fed a lot in order for her to gain weight, and she can't properly get rid of it on the other end.  Another possible culprit is that her supplemental feedings are made up of breastmilk with formula powder added - and the formula powder they were using was a cow's-milk-based formula.  It is not uncommon for kids to have problems digesting cow's milk, so yesterday we had her switched to Elecare which should be much less likely to cause any abdominal distress or distension.  Maybe this switch will help - probably a long shot, though.

So it looks like we can only do one or the other - get her dilation down or get her properly fed, but not both!  Since we can't do both, we can't do the one-step surgical option ("primary pull-through") and she will need to have two surgeries instead.  This is not unexpected, but we had hoped to avoid that.  The colostomy will happen monday morning at 730am, and she will have that in place for probably 3 to 8 weeks.  Once she is gaining weight well and her bowel is back to a normal size, they will do the second surgery to re-attach the bowel to her rectum.

The surgeons say that basically it does not matter whether she is able to do the one-step or has to have the two-step surgery - she'll be fine either way in the long run.