A Bit About Our Journey to A G-Tube Blenderized Diet

**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.

 Homemade Blended Formula, Special Needs, G Tube, Blended Diet

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.

Blended Diet G Tube Feeding

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).

Homemade Blended Formula, Special Needs, G Tube, Blended Diet

His current amount that we have high hopes for. He gets one bottle of water then one bottle of food, repeated four times throughout the day. (Its quite a bit of water but about a year and a half ago he was hospitalized for SIX days for constipation, so we hydrate, hydrate, hydrate!)

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 :-)

Special Needs, Having Fun

Still on the small side but definitely full of energy!

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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Comments

  1. Hi! We were finally able to get rid of our g-tube at about age 8. We did keep it for a while, unused, just in case. We also did a blenderized diet. I made hemp milk and added healthy fats, probiotics, etc. We actually went to an inpatient feeding program for 6 weeks, in hopes of getting our son to eat/drink orally. It still took us a while to get rid of the tube. However, we were able to switch to gravity bolus feeds vs. overnight pump feeds, once he got big enough to tolerate “meal sized” amounts. Our boy is still not a great sleeper (deafblind kids often aren’t), but we have his room set up and gated so he can safely wake up and play without getting into too much trouble. He just falls back to sleep when he is ready. My mom radar goes off if he gets upset, but 98% of the time, he just plays for a while and goes back to sleep. If their room is “baby-proofed”, and you can hear them, it really is okay to just let them be. We started doing this years ago, and my son is turning 10. We have never had any problems, but he also doesn’t have any equipment that runs at night. I have heard that people are sometimes able to get home-health services for tube-fed kids, to help with night feedings. You may check with your insurance or state.

    • Thank you Shannon for sharing! I am always so encouraged to hear of other families successfully being able to get rid of the g-tube. We’re hoping to get into an inpatient program at some point to. Its definitely been a challenging process to move towards oral eating. It always seems I hear from another family who has been successful at just the right time to keep me encouraged and us moving towards the goal of being tube free. Thanks for the night time suggestions too!

  2. I’m glad that the blenderized diet helped alleviate some of your son’s reflux. There is now a product that is 100% real food for tube fed people. You can learn more about it here:
    justfoodblends.com

    • Thanks for sharing. This looks like it would be great to have on hand for the days when its harder to do the blends… or a great option for traveling.

  3. Jessica says:

    I have a 17 month daughter that has been G-tube feed since day one. We have had issues with thrown up since we brought her home. Finally at 13 months I went against doctors and tried soy formula and that seemed to help 100 percent. But now they want her off formula so we tried pediasure and pediasure soy and its not going well at all. Im thinking of keeping her on soy formula so she gets the little bit of milk a day she needs but really want to start baby food through G–tube then move up to blenderized foods. My question is do you put the food inside the food bag and let the pump push it in or do I use the big syringe and just push it in slowly by myself? Also how much do I start using? Looking for what others have done. Please help Im stuggling and have no help.

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