Thursday marked the one year anniversary of N’s G-tube surgery.
And he’s still 100% dependent on it.
So I decided it was finally time to find a spot in my kitchen cabinet for all of his medical feeding supplies. They’ve spent nearly a year on the counter glaring at me. Now they are neatly tucked away in little bins in my cabinet.
I went from hoping he would breast feed, to hoping he would bottle feed, to hoping he would eat anything by mouth, to accepting this is the way it is, at least for now. It still makes me sad and I did feel a good bit of PTSD on the one year mark of that awful surgery when he pulled a couple of scary stunts and needed lots of help breathing again.
I have a dear friend who was recently diagnosed with breast cancer and underwent chemotherapy. She told me, “Everything has an upside, Kathy. In some ways it’s way easier to not have hair. I would rather have hair, but in some ways it’s easier.”
And so it is with the G-tube too. I would rather he not have it, but it’s a very efficient way to feed him. We’ve become experts at rigging the pump up all sorts of places. He can eat in the car, while he’s sleeping, or at the dinner table with us. It makes no difference. There are upsides.
We just started feeding therapy with a new therapist (his fifth) and I’m hopeful. We are going to start a new technology called electrical stimulation (E-stim). It uses the electrical current of a AA battery to stimulate a swallow. Even though it sounds terrible to me to be electrically shocked while I’m eating, people with an abnormal swallow love how it feels. So, we’ll see what little N thinks.
In the meantime, I’m slowly introducing him to real foods. I’m cheating of course because when our last therapist handed me a copy of the Homemade Blended Formula Handbook, I thought “there’s no way I’m going to make a homemade meal for N when I can barely do that for the rest of us.” I’ve learned some shortcuts though. We started him on a formula called Compleat Pediatric that has real beans, peas, chicken, cranberries and a good source of fiber. And thank goodness for those little organic baby pouches. I squeeze those into his dinnertime feeds, especially the prunes! I also can do homemade chicken broth fairly easily. That’s a healing food right there. Little guy is tolerating things well. If I can get a good system in place to feed all the picky eaters in my family in a fairly streamlined way, then we’ll be in good shape.
Aside from all the intricacies of tube feeding the most valuable information I’m learning from the The Homemade Blended Formula Handbook is in regard to nourishment:
- We feel nourished when others are fully present and listening to what we are communicating.
- We feel nourished when another person unconditionally loves us.
- We feel nourished when our choices are respected.
- We feel nourished when we’re accepted for who we are and not judged by others.
- We feel nourished when we feel that we have some control over our own lives.
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!