Ellie had her g-tube removed last November.
For so long, feeding therapy was up and down and all over the place. I wondered if we’d ever make that breakthrough such that she would be willing and able to eat “normally.” And yet, today? I don’t even think about it.
There was no one magical moment. I suppose if I had been meticulously graphing her food intake, I would have seen the curve go from seemingly-flat to exponentially taking off, but it didn’t feel that way at the time. Things that were unthinkable a few months earlier had quietly become every-day normal.
I remember a few benchmarks along the way. Last March, I was in North Carolina with friends and I remember M texting me to say he had taken the kids out for lunch and had actually ordered Ellie her own meal from the kids’ menu, and she’d eaten it all. That was a first.
All along, we were offering her more and more food, and trying to feed her less and less through the tube. Instead of rigid, precise amounts of formula, it started to get more flexible. If she seemed to eat a lot at dinner, we’d reduce or eliminate the tube-feed before bed.
At some point in that time period, our feeding therapy appointments had spaced out from weekly to monthly, and then we missed one when she was sick and I just… never rescheduled it. All she was doing, at that point, was practicing and exposing. She had the basics figured out. How did that happen?? I mean, I was there, and I still don’t know how she figured it out.
And then, right around the Fourth of July last year, I just… stopped using the tube. No one told me to. I didn’t ask permission. I just felt like she’d eaten enough that day, so instead of the one bolus dose of formula before bed, I just didn’t give her any. And I didn’t give her any the next day, either.
We checked in with our pediatrician every month over the summer and early fall, just to make sure her weight didn’t drop off and I wasn’t accidentally starving her. Plus, I wanted to have official records of her weight post-tube so I’d have justification when we were ready to remove it. Typically, our feeding therapist had told me, she wanted to see kids go 3-6 months without using the tube before actually removing it, since you’d hate to take it out too soon and then need it again.
In September, I made an appointment with her surgeon to discuss getting it removed. (Technically, I could take the hardware out any time I want, but to close up the hole requires minor surgery. She’d had it too long for it to heal on its own.) I expected to have to present my case and my evidence of Ellie being able to maintain her weight and all of that. Instead, he pretty much just took my word that she was doing great and we put the surgery on the calendar.
And so, November 17, she had day surgery and it was done.
Some day, I may actually have to explain to her, or remind her, why she has that little scar on her stomach. She probably won’t remember the feeding tube at all. For me, it was a massive focus of our life for three and a half years. And now it’s just… over.
She eats, for the most part, like a four-year-old. Some days she will only eat strawberries and string cheese. Some days she’ll devour a plate of chicken tikka masala. She’s still a bit more sensory-sensitive than some kids, I suppose. And she has fine-motor-skill trouble with utensils. But in terms of food getting into her belly via her mouth? That chapter is closed.