In case you’re new here, both my twins have feeding tubes – G-tubes to be precise. This means they get 99% of their nutrition through tubes surgically implanted in their stomachs, with the other 1% being by mouth as we still try bottles with them daily.
We see a feeding team (pediatrician, speech therapist, dietician and occupational therapist) monthly and they manage all the boys feeding, including how often we feed them (every 3-4 hours 24/7), how much we feed them, monitoring their weight, and much more. Basically, any and all feeding decisions are made by them.
Sometimes this can be frustrating to feel “not in control” of your own children’s most basic need (food), but my boys are medically complex and we need the specialists. It’s just another part of “medical life” we had to get used to.
Anyway, at our February appointment, we got some GREAT NEWS. We are allowed to start trying foods with Axel! He was 6.5 months corrected age (9.5 actual) at the appointment and showing all signs of readiness (head control, watching food, sitting up well with support, etc) so… we went for it!
At the appointment, I got to feed him some baby cereal! It was so exciting. He took to it right away and just had to grab the spoon and do it himself. He’s still like that now. He hates to be spoon fed and instead, grabs it when it comes near and does it himself. I’m cool with that!
The team felt Jaxon wasn’t quite ready yet but we’re really hoping he can join it soon. I have snuck him TINY tastes of cereal and avocado here and there, only a dot on his lip and no chunks, just because I feel bad leaving him out. He has loved all of it so I have a feeling he’s going to be a real foodie when he can actually eat.
Moments like this are exciting for any parent, but only another tubie parent knows the true JOY of just being able to actually feed your child. Of course for now it’s just small tastes of things and not for nutritional content, but it’s a step toward “normalcy” and eating by mouth.
Still, prepping syringes and hanging a feed bag on the IV pole feels more natural to me at this point than going to the kitchen to make food for my children. Just part of this twisted life. But I can’t wait for that to slowly change over the coming years. I’ll never get sick of hearing, “Mom, can I have a snack?” I can promise that!
And, if you’re a fellow tubie parent looking for ways to make the tube life easier or organization hacks, I’ve compiled my fave Amazon finds for my boys here in this easy-to-shop list!
