**This post is not meant to be medical advice in any way. Every person is different and a Doctor must be consulted prior to changing a GTube Diet.**
Champion’s feeding has definitely been one of the more saltier challenges of our journey thus far.
At one point when he first got his tube at 5 months old, he was on a very broken down elemental formula called Elecare. He was on that formula for about a year but he could not tolerate it and he barely grew while on it.
We would feed him and feed him for literally hours and hours through his tube each day, only to have most of it come back up. During that time period we ended up having to get rid of a rug and rocking chair because they just got to soiled from him not keeping his feeds down. Doctors kept telling us, “Oh, it happens with g tube fed kids, there’s nothing we can really do, he’s already on a broken down, allergen free formula, don’t worry its normal.”
We just didn’t feel that it was ok or normal for Champion to spend his days with his formula coming back after almost every single feed. He was so uncomfortable, so small, and cleaning it up all the time was dreadful. We knew there had to be a solution.
So I did what has helped me through so many challenges as a special needs parent, and that is to search the internet to see what other moms and dads are doing and learn from them.
While searching for a solution, I came across forums and groups and websites dedicated to parents feeding their children,through their g tube, real food that had been all blended up. The idea was so foreign to me, no doctors had ever suggested it as a solution, but after reading about other parents success with it I was hooked on the idea.
I eagerly ordered the Homemade Blenderized Formula Handbook from MealTime Notions. When it arrived I read the whole thing in about two days, crying while I read it. I fell in love with the idea that I could actually make Champion’s food for him and move him off the formulas that just weren’t working for him.
That idea that I could make food for my son and choose what went into his tiny stomach, despite him being tube fed…it resonated deeply in the maternal instinct part of my soul. I hadn’t realized how sad I was that I hadn’t been able to cook for Champion or even choose what he was eating, until I learned there was the chance that I could still do those things.
So very slowly, we began adding small amounts of baby food to his formula. When we saw that he was tolerating it well we began the process of replacing all of his calories from his formula with real, honest to goodness food. It felt so good to do.
His throwing up was drastically reduced by him being on a blended diet. We were shocked when he began growing and seemed to be so much more comfortable. We knew the blended diet was the right choice for him.
He’s been on the blended diet for over two years now. However, even on the blended diet we still have some trouble with Champion growing at a slower rate (but at least now he’s growing) and occasionally we still have trouble with him throwing up (he’s got a pretty bad case of acid reflux). But nothing like it was on the formula. And we now have an amazing Doctor and Dietician who support his blended diet and are helping us make sure he’s getting all the right nutrition and calories that he needs.
Despite our success with the blended diet, Champion’s feeding tube has still cost us a lot of sleep.
We have recently changed up Champion’s blend to have less volume hoping we’ll be able to go to bed earlier. We think we’re going in the right direction with it and hopefully soon we’ll be settled on a diet that is a happy medium of him growing, feeling full, and me being able to go to bed at a decent time. (I explain here why his feeding affects what time I go to sleep).
This is just a little bit about Champion’s G Tube journey. I plan on sharing in the future more specifics about his diet and a bit more about the ins and outs of how we do his blended diet (and how he came to even have a g tube in the first place.)
For now though we’re hoping, really really hoping, that we can find a good diet that works for him in the growth department and works for me in the sleep department. Hopefully I’ll have a positive update on this soon
Let’s Talk: Any tube feeding moms reading this? If so what has been the most challenging thing about tube feeding for you? Anyone had success with weaning their child from the g tube? And tube related or non tube related, special needs related or not, any encouraging sleep stories???
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