Best Case Scenario

Terran got to keep his central line!! The doc was on the fence about waiting another day for a negative blood culture because it had taken so long to get him to a “therapeutic” antibiotic level (the point at which the dosage is high enough to kill the bacteria). Since it wouldn’t harm him to wait another day, we opted for that and we’re so glad we did. The next day – negative! We were preparing for surgery but the little guy pulled it off (even the doctors were surprised). Two days of negative blood cultures later and we were packing our bags for home!

We were released from the hospital on Terran’s 6 month “birthday“. Due to a fever risk, we got his 6 month immunizations the morning we left so he’d be “under observation” for the day. Due to shift timing and age requirements, we did them at 6:45am. He was a total champ (per usual) and went right back to bed afterwards. I had been working remote from the hospital and naively thought I might get a couple extra hours in if he was drowsy from the shots but not this time. He acted like nothing happened and demanded play all day. Luckily my coworkers are awesome and didn’t mind if he tagged along to a couple meetings 🙂

The first day home was unbelievable. Terran hadn’t felt fresh air in 8 days, mama in 3 days. We walked Alki beach for 2 hours on a perfect sunny winter morning. Terran took in the sights from stroller height and mama breathed deep, appreciating the beautiful place we live. Sweet sweet freedom! Walker’s workplace had a positive COVID case so when we left the hospital we actually went to Nana’s so Walker could wait through the “incubation” period and get a couple negative PCR tests. He’s fine and we were all back together the next day.

We went home with an antibiotic regime (bonus infusions every 8 hours) that used a pump that looked like an original Nintendo console (both in size and age). The extra infusions took a lot of extra time and cut into what little sleep I got (infusions at 6am, 2pm, 10pm, each taking 45 min) but it was so worth it to be home. Due to the antibiotic compatibility with his TPN, we had a slightly different regime for that as well. The temporary style had more line connections which added possible points of failure – and that happened 3 times in a 10 day period. One of the connections would separate and we had to triage the situation and do another TPN set up on the fly. Scary the first time you see it (Nana and Grammy are now both initiated) but we know what to do and keep a cool head about it. We’re just now back on his regular TPN program. “Finally just one infusion!” -never thought I’d say that.

Since being home, Terran has started sitting up on his own (with a little support at times), grabbing everything in sight and putting it in his mouth, and even tried a few different foods! Started with avocado – not a fan. Then scrambled egg – ok but no. Then yogurt – best so far (and bonus probiotics)! Next we’ll probably try smashed green beans or another vegetable. We’re holding off on carrots and sweet potato since those will be the sweetest things he ever eats. He’s remarkably vocal these days! Walker thinks he heard “mama” a few weeks ago (I don’t count it because it was not intentional) and then we both heard “dada” as Walker walked away one day (followed by mama’s expletive). We’re using sign language so maybe we’ll start understanding more of what he’s thinking in a couple months!

Grammy is helping with caretaking in February for 3 days a week and that’s been such a blessing. With the random triaging we sometimes have to do, I can’t imagine leaving him in anyone else’s care. Terran lucked out with grandparents with medical experience so they picked up the central line training instantly. Walker and I have learned additional things along the way, doing this every day, and we’re able to share that knowledge with them. I’m so happy Terran has such loving, attentive, and safe caretakers with him every day <3

THE BEST NEWS EVER: I can’t remember if I put this in a prior post, but a couple clinic visits ago we learned that Terran’s guts are WORKING!! Not completely, but they are starting to show some absorption capabilities. We know this because he’s growing along the standard growth curve (albeit on the lower edge) but his TPN calories haven’t changed since November. That means he’s growing at a 6-month old rate on a 4-month old’s calorie allotment. Everything else he’s absorbing from breastmilk. THIS IS THE #1 GOAL!! The doctors call this “growing out of his TPN” and ultimately we wish, hope, and pray that he can absorb everything he needs through eating and toss the TPN for good! We’re a LONG way from that, but this is the first sign that reality is a real possibility.