The Hope Method or: Waiting for the Shoe to Drop

A few positive notes to start the update since last week: Mercy is now over 5lbs, and a biopsy conclusively ruled out Hirschbrungs Disease as the potential cause of her bowel issues. Praise God.

It feels great to cross that one off the list. If we ranked the “Top Ten Scary Things that Doctors Think Might be Causing Mercy’s Issues,” Hirschbrung’s would have been a solid #2.

That said, the plan right now is to increase feeds at a super slow rate every other day and hope Mercy can handle them. When she can’t, then we’ll send her to surgery. We’re back to hoping that her issues will work themselves out before her expanding belly starts to compete for space with her lungs.

Exploratory Surgery again? Yes. Maybe.

After conducting her third lower GI contrast study, doctors here still see potential indications of a partial blockage at the point where her small intestine connects to her large intestine. The working hypothesis is that Mercy may have had NEC at some point, but for some reason, it was less severe and caused only a partial blockage. This meant that it didn’t present as a normal NEC case and was overlooked. There’s a chance that her surgery in October missed what could have been a very small NEC-caused obstruction inside her intestine.

If she does go into surgery and the surgeons don’t find anything, it’ll mean the issue isn’t a

mechanical blockage that the original surgery missed but rather a functional issue with the intestine. If it’s functional, she’ll come out of the surgery with an ostomy bag to help give her system time and space to heal.

Thankfully, we’re told that Mercy would likely not require the bag beyond her third birthday. It likely wouldn’t be permanent. Still scary though.

Most nights Erica stays in the Ronald McDonald rooms at Lurie's. I stayed there last night. Very thankful for these, and it’s great to be able to be close to Mercy despite the hospital’s distance from our home. Staying overnight lets us be present for rounds each morning and is so important as we monitor for her likely pre-surgery crash.

That's where we are. Treading water right now, thankful for all of God's mercies, even the severe mercies.

Last week Erica took perhaps the best picture I've ever seen in my entire life:

Give that woman the Pulitzer!!

Love to you all