GI Doc, a Real American Hero

Today, we met with a nurse practioner from the Gastrointestinal (GI) doctor's office. She seemed nice, and already up to speed on Rory's situation, which added to my comfort level regarding this GI group. Plus, they'll fight for freedom wherever there's trouble, so that's a bonus. Inspection of Rory revealed that all looks good so far. The past week at home with her parents alone on staff does not appear to have worsened her condition.

http://www.youtube.com/watch?v=gc8mVs2H4Vc&feature=youtube_gdata_player

We've got the direction we were looking for. GI Doc is having us mix MBM (that's mother's breast milk) with the liquid gold formula. For now, it'll be a mix of 30 ml MBM and 60 ml liquid gold. We'll increase the percentage of MBM every few days, as well as increase the total volume gradually until we eventually reach 120 ml. This is great news, not only because of the cost of that formula, but because we are up to our ears in MBM, quite literally. Needless to say, I did not own a chest freezer before the NICU visit.

The specific instructions are a little more loosey-goosey, allowing some room for our own interpretation of Rory's response and correction on the fly. GI Doc said we don't have to be pedantic about feeding her every three hours during the night. We can let her sleep until she wakes on her own and feed her then.

We'll be proceeding with the manometry study. Think 'drug mule', but instead of heroine, the balloon is filled with pressurized air. For my colleagues in the membrane industry, a better analogy would be to think about a pressure decay test for a hollow fiber membrane. If you didn't get that second reference, fret not, it probably just means you don't appreciate the Dilbert comic strip either (ie: Engi-nerd humor).

Currently awaiting referral to CHOC, Children's Hospital Orange County. They are the regional experts in applying and interpreting the manometry test for infants, but we need to get approval from the insurance company because CHOC is out of network. But the idea here is that if Rory's status goes south quickly, the docs would like to have that piece of information already in our back pocket, and not have to delay to get it. If we are forced into making a quick decision about an ileostomy, at least we can then make a more informed decision with this knowledge already in hand. And hopefully we won't even need these results.

Other than that, not much more to report. Rory continues to do well. We are less freaked out by every squirm, grunt, or wince that Rory makes. We continue to monitor her diligently, and each day pray that she is closer to outgrowing this issue all on her own.