Work, little GI Neurons!

After an encouraging couple of days, this week is starting to feel like Groundhog Day: Mercy’s intestines are way too full of air, feedings have stopped, the irritating suction tube is back in, she needed a transfusion on Saturday, and we aren’t sure what’s going on.

We had hoped that Mercy’s inability to pass air through her intestines was something she’d outgrow. Premature babies will sometimes have decreased neuron function in their GI tract initially and then gain function sometime in the 3rd trimester as their GI neurons learn to do their job. Mercy is now 36 weeks gestationally, and doctors suspect that the gas issues may be related to ineffective neurons that haven’t figured out how to work even as she’s grown older. They think Mercy may have a neuron-related disorder beyond just prematurity. And based on a couple of other tests they no longer suspect CF.

Diagnosing the current leading potential disorder - Hirshschsprung’s disease - requires a somewhat dangerous biopsy, but it’s the likely next step in figuring out what’s wrong. The surgeons are right now assessing if they can do the biopsy on someone so small.

We’re praying that her neurons start to work correctly soon, before the biopsy. We’re also praying that any biopsy would be safe for her - no complications.

If it’s Hirsh, we’re looking at more than a few surgeries for Mercy. If it’s not, they’ll start to look for rarer genetic disorders.

In the meantime, I'm enjoying time with our beautiful little baby girl today. She looks so good in her new outfit.

Thank you for praying with us!