Long road

There have been some hiccups over the past few weeks, but overall we’re in a good place. With Terran laughing and smiling as much as he does these days, it’s hard to be anything but optimistic! We just have to remember it’s a long road we’re on.

Last time I wrote we were gearing up to reduce his TPN- that didn’t happen. In fact we increased his TPN calories for the first time since November 2021. He’s only bumped up from 70 to 80% of his necessary calories through TPN. He still absorbs some through eating, but after expecting to back off the TPN reliance, we couldn’t help the immediate feeling of defeat. His weight had plateaued (literally didn’t gain an oz in a month) so it makes sense that he might need more calories than he’s getting. Even though it’s typical for babies to have growth spurts and stalls, and the team is very trend-based, it’s hard to not react to something that has the chance of being stunted by your treatment. We’ve reminded ourselves this is a long game and we should keep our expectations on a tight leash. Hope for the best, plan for the worst.

Terran has been trying new foods and finally getting into it! We’ve spiced up the menu a bit and started giving him bigger chunks he can hold onto since he doesn’t like purees on the spoon (at least not for eating lol). He loves anything he can suck the juices out of- lemon (got the OK from doc on that specific fruit), tomato, green beans, steak… plus now things like bread and butter, egg, and sweet potato fries. Green beans have pectin which helps to slow down the journey through the gut so we’re very happy he’s drawn to that veggie!

We had to slow down on the feeding for about a week because of something the docs call ”butt breakdown”. Ouch! It’s like an intense diaper rash- peeling, broken skin, redness, itching- he had it all. Poor kiddo needed changes every 2-3 hours (even overnight) and constant thick barrier cream. “Like frosting a cake” I kept remembering a NP saying while we were inpatient… They had been warning us about this for a while. We just thought T was special (don’t all parents) that he hadn’t gotten it yet, but it was only a matter of time. It was a challenge but he’s all healed up for now! We’re back to more eating, and we’ll be stocking up on a lot more butt cream from here on out.

One looming threat based on prior labs and the butt breakdown fiasco was the possibility of Small Intestine Bacteria Overgrowth (SIBO). Another warning we’ve heard from early on, this is something Terran could experience his whole life, on or off TPN. It’s where the wrong bacteria overpopulates in the small intestine and it’s treated with antibiotics. Some kids are on a constant antibiotic regime to battle SIBO. Since Terran doesn’t have his ileocecal valve (the sphincter between the small and large intestines, near the appendix) it’s even more likely he’ll have to deal with chronic SIBO. Early on I asked about probiotics, but they’re not recommended because they can feed the bad bacteria, too. We’ll see if he likes kimchi and sauerkraut, but no medication probiotic bombs for T. Luckily his follow up labs looked stable, so it’s not looking like SIBO… yet.

In good news, Terran has been holding his feedings down really well! We only hook up his g tube at night and keep it slightly elevated to ensure only ”extra” comes out. He’ll still have the occasional vomit, but only once every 1-2 weeks so totally manageable. Way to go, T!

Mama had her first nights away from Terran this month 😬 I went on a work trip for 3 nights. A few factors made it OK: the trip was in Hawaii, I got to FaceTime with Terran 3x day, Nana came over each evening so Dad could to TPN undistracted and helped with the dressing change, and T had a great weekend with Dad trying new foods and exploring new things! It was a good ”break” but I was so ready to hold him when I came home. He was asleep so I had time to do a home COVID test before going in for his night feed. He was so surprised and happy to see me, it was the best part of coming home. 🥰 Walker got a break from nighttime duty for a couple nights after single dadding it all weekend. He rocked it!

Terran has been practicing standing for a few weeks and is now MOVING! I typically set him up standing at his wooden play structure, the coffee table or the couch with a couple toys. I turned around one time to see he had moved halfway down the couch! he was so pleased with himself! I ran over to move his TPN backpack closer so he could keep cruising. It won’t be long now until he’s walking 😳 We need to figure out how to keep his TPN bag close… thinking a rolling dolly with a leash… Walker better get to work making it!

Terran is interacting with things with more engagement and wonder! He’s excited to meet new people and talk to them (bababa babbling still). He plays with toys in new ways and loves feeling natural things- grass, sand, rocks, water… anything he can touch. Yesterday we harvested some herbs from the garden and sat munching on chives and mint for a while. Planning for an entertaining garden this summer for him to explore!