Change of Plans

The NICU roller coaster took a different curve today. We don't have all the answers yet but last night, Madeleine struggled quite a bit with residual feeding. They would feed her and then before the next feed, they'd suck out her stomach and each time, residuals remained. The good part of the story is that the residuals were clear and showed signs of digestion. If the residuals were yellow or green, this would indicate a potential infection and would be cause for great concern. Instead, the clear residuals appear to indicate that very little is getting through her intestines. (Another related sign is that she has had very little output into the ostomy over the past few days.) The surgeons examined Madeleine this morning and they believe that the cause of this problem is an obstruction at the ostomy (the part of the bowel that sticks out of the gut.) In the past they've tried dilating the ostomy with very little improvement. Still, they are convinced this is the problem and have reccomended that the intestines be reattached this Friday. This news has caught Kirsten and I by surprise and we have a number of questions. I'll list them out right now and will post answers once we've spoken with the surgeons:

1) Why do the surgeons believe the ostomy is the cause of the backup? Could there be another problem (ileus) that is leading to low output?
2) What is the risk of doing the reattachment surgery right now? (Typically, this surgery is scheduled 6-8 weeks after surgery and Madeleine is only at 4 weeks.)
3) What are the risks for waiting on surgery and hoping the ileus/ostomy/gut resolve the issue on their own. (Why are we deviating from this course when this was the course that most have preferred in the past few weeks?)
4) What is a typical recovery period for the reattachment surgery?
5) What if the surgery doesn't solve the problem? Does this put us in a better or worse position to address any other issues?

As you can see, we have a lot of questions about the surgery and we're hoping to get some clarity soon. Regardless of the answers to these immediate questions, we plan on having a meeting with Madeleine's neonatal attending doctor, her cardiologists, and the surgeons as we want to be sure that everyone agrees this is the right decision at this time. While we're being very cautious right now, we're hopeful that this could serve as a major step forward. While we obviously have many concerns, we are optimistic that, should Madeleine have the surgery, she'll come out of it stronger than ever and, once feeds begin again, she may be further ahead than if we waited the traditional 6-8 weeks for surgery.

We'll post more as soon as we get more information from the Doctors. Thanks,

Brent and Kirsten