Today is Terran’s Due Date!

Today is Terran’s due date! He’s full term! Seems like an appropriate day for some good news. The doctor that did Terran’s surgery got back from vacation today (they practice as a trio- all are great, but I particularly like her). She told me that Terran has technically passed her surgical recovery markers: 1) the contrast moved all the way through and 2) he passed (very small) stool. She’s confident he’s not at risk of going back to the operating room (at least for this particular surgery). Terran’s small intestine is like a “funnel” without the “pump”. Material is slowly moving through, but it’s essentially gravity that’s doing it. This is a combination of the extremely stretched out bowel losing its muscle tone + the surgical tapering both needing time to heal, or return to a size where it starts pumping contents through. While the timeline is totally dependent on the individual, and there aren’t too many cases to reference, the surgeon talks in terms of months, not weeks. She wants to get Terran home on full TPN so we can begin our lives together while he heals. (YES, PLEASE!) She reached out to Seattle Children’s Hospital today to get Terran on their “list” for admission to their Short Gut program. There we’ll receive education on Terran’s home TPN regiment. We were all hoping Terran would be accepting small feeds before going home, and he still might. It could take a couple weeks to get transferred to Children’s.

The plan we’ll follow at Swedish until his transfer is:1. Leave the replogle in a few more days, or until the color turns clearer, 2. Follow the same replogle removal procedure (remove the suction, leave on gravity for 1-2 days, remove tube entirely), 3. Monitor Terran’s tolerance (vomiting) for a couple days, weigh his comfort level with/without the replogle to decide whether to put it back in.4. If we keep it out, and he has limited vomiting, start a (very tiny) feeding amount.

We’ll likely have to strike a balance between Terran throwing up (very unpleasant for a X times a day) and the replogle (unpleasant all times of day). There will be a threshold that the vomit is worth it. Terran will be so much more mobile at home without the replogle, and I’m hopeful we’ll get to a good tolerance before we go home. That’s the limit to my expectations. Starting the feeds would obviously be HUGE, but I’m counting that as “above and beyond” at this point. He loves the binky dips, and I hope he begins feeds before we’re at risk of running out of colostrum, but I’m more realistic about his recovery timeline now and I don’t want to rush him. He’ll get there at his own pace.

The surgeon noted that when the “pump” starts working, Terran will likely have an issue called “dumping”, where the contents move too quickly through the bowel. On the outside, this looks like diarrhea. On the inside, this looks like no nutrient absorption. Not good. Guaranteed Terran will need TPN for his whole life. Even if his bowel returned to full functionality, there’s just not enough of it. Still, eating food is good for his gut, even if he doesn’t absorb anything. The ultimate goal would be to get some absorption through the gut. We’ll see how it goes. We may break the record for the number diapers changed – I’m totally ok with that if we get to do it all at home!

P.S. Terran got to experience a baby swing for the first time- and he LOVED IT! Good thing we have the same one at home. He’s such a happy baby, he really likes everything. We lucked out with him 💕