What You’re Asking Me About G-Tube Feeding

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My daughter, Rosie, has been fed via g-tube since she was six months old. We haven’t always had the greatest relationship with the g-tube. There were even times when I downright resented the darn thing. 

Over the years and with a lot of trial and error (and therapy and work) I have come to see so many positive aspects of our life feeding Rosie via g-tube. This has given me the space to be an open book and position myself as a resource to many different people- those inside the g-tube feeding community and those who simply want to know more. 

I put out a call for questions- any and every question- about our g-tube feeding and my social media community SHOWED UP! Here, I’ll answer these questions about our g-tube feeding.

First, as always, I want to state clearly my disclaimer that I am not a medical professional and no information on this page or any other on this website is meant to replace medical advice from your provider. All content provided by me is always for informational purposes only.

Will your child always need a feeding tube?

This answer varies from child to child, family to family. There are many factors to consider, such as why the child received the g-tube in the first place. Some kids have a g-tube for a shorter amount of time (less than a year) and are able to orally eat an adequate amount of food once they get past a few medical issues on their horizon. 

Other kids might have a longer road ahead in terms of “weaning” them from the tube. This is often done with much care and under supervision of a professional. This, obviously presents the ever-present issue of privilege in access to medical care. 

Many of the best options for therapeutic tube weaning are difficult to access for low-income families. The time and money it takes for that kind of process is a privilege which should not be taken for granted. Therefore, the reason a child might stay on a g-tube for much longer could be tied to lack of reasonable access to the services to help regain the ability to eat by mouth.

As for Rosie, we just don’t know what the future holds! We do some therapeutic tasting of foods and we get creative about involving her in meal times in as many ways as possible- think using all five senses at the dinner table. But maybe in the future we will have the capacity to try a formal wean. 

Are there any contraindications with a blenderized diet?

I have to say, please ask your medical provider about your specific situation with your child! I want to share my own experience alone and encourage you not to conflate my experience with medical advice.

I have been doing this blenderized tube feeding for almost four years and I have met countless parents online and in person whose kids have different situations and diagnoses and medical histories. Each one usually comes into the fold with an objection to blenderized tube feeding which they heard from a medical provider on the child’s care team. I have never seen any of those threads or conversations end with a parent being convinced against a blenderized feeding plan. 

Inevitably, other parents respond with stories upon stories of relating to the experience of hearing the same objection and then ultimately finding a way forward with a blenderized diet. Some of them “went rogue”- what I hope is a last resort- and others found other new providers who support their values and intuition. Occasionally, they continued the conversation with the same provider. They supported their reasoning with new studies and findings and personal reasons why their child would benefit from trying a blenderized diet. It usually starts with a trial period, per their providers request. After perhaps a little bit of troubleshooting (which is necessary no matter what the new feeding plan would be!) they often find their child sees relief from some issues they were previously experiencing.

Here’s the thing- and I’m just gonna say it- I personally do not believe there are any contraindications to a blenderized diet of real food via g-tube. I am not a doctor. I am not a dietician. I have empathy for the professionals who offer only pushback to their patients because I understand that their training and the clinical norms are a certain way for a reason. 

Many medical professionals would really be “sticking their neck out” to not only allow but recommend and advocate for blenderized tube feeding. I get it. Really, I do! That only scratches the surface of their experience in regards to recommending this practice.

As for Rosie, she has no contraindications. And she has a lot of different diagnoses represented. If she did have any perceived contraindications, we would simply adjust the contents of her diet to fit her needs. I always return to the common sense approach of “How would we change this if she were eating by mouth?” That has truly never failed me.

How much time does it take to prepare the blended food?

This has varied throughout our blenderized tube feeding journey. Currently, we blend her food daily, first thing in the morning. We estimate calories and nutrients, toss it in the blender, portion meals for the day, adjust for volume as needed, and it’s done! This takes about twenty minutes each day.

In my Blenderized Back-to-School E-book, I offer a method of weekly batch blending that we sometimes with use if we are needing to blend ahead of time. This method requires some freezing and storage and I can knock it out in under two hours.

Other times in our lives, we’ve blended every other day or every three days. During a season in which I stayed home with Rosie I would sometimes blend meal-to-meal.

The longer you blend, the faster you get at putting together and appropriate meal based on your child’s needs. Additionally, I hardly ever calculate down the the micronutrient anymore, but I spent the first two years doing that because it was important to me. Now I trust my instincts and adjust as needed for weight gain and other considerations. 

When Rosie is admitted to the hospital, do you still bring her blenderized food?

We do, but it wasn’t always easy.

When Rosie had been on a blenderized diet for about three months she was being admitted for a major surgery. I dug DEEP into research and counted all the costs of insisting she would be fed her blenderized diet. Ultimately I decided to talk to whomever I needed to in order to get approval to feed her real food. 

Side note- this was really hard for me. I hadn’t flexed my advocacy muscles much at all yet and I didn’t even really trust myself to speak up on matters of her care. I’m glad I’m past that insecurity that was bred in me from the PTSD of her long medical journey. 

The process was long and arduous, but I eventually gained approval to bring in a commercial real food product called Real Food Blends to feed her during that stay. That was almost three years ago and (thankfully) we have only had a few short hospital stays since. I have to say, it has gotten easier and easier with each stay. More importantly, I have gotten more confident in stating why we feed Rosie the way we do and I have her growth, progress, and healthy seasons on record to prove it. 

We have a doctor at this hospital who is an ally and friend to blending. He is honest with me about how long it will take to change the mindset behind tube feeding to be more friendly to blending, but he doesn’t discourage me from advocating for it. He has seen it help my kid and countless others.

Do you only give Rosie certain foods?

We introduced food systematically for the first two months. I outline my introduction method in my Blenderized Tube Feeding Masterclass (COMING SOON!). Essentially, I used the same logic and plan I would’ve used if Rosie were eating by mouth and counted that all as information for building the most robust list of nutritious foods possible for her to receive via tube. I waited a few days in between new foods to watch for reactions. The main reactions she had were to dairy and gluten, so we avoid those now. Dairy in particular was a bad reaction which landed us in the hospital for a few days.

Why do you think this isn’t more common in hospitals?

How long do you have? No, but really. This is a huge topic. I’ll try to cover as much as possible without some of my answers seeming like I’m a conspiracy theorist.

First of all, convenience. Convenience is king in a hospital setting when there’s often understaffing and ongoing need for more nurses and workers. The truth of the matter is, a shelf-stable formula will always be more convenient than a blenderized diet. My response, though, is to remind everyone that there is (quite literally) always a cost for convenience.

Next, I’ll say follow the money. One company in particular is the maker of most of the brands of formula in hospitals and they have ties to the insurance companies and the DMEs and the hospital administrators. This is information we have access to but you have to do a little digging. I know this seems conspiracy theory-ish, but it isn’t really when you consider how reverence to the almighty dollar is behind every single problem in our medical system. I’m not blaming one person, company, or profession because it’s all part of a bigger machine that again, has a bottom line to meet. It took me years to understand, process, and explain this even to the degree I have here. 

Is there research on this?

Yes! I have a list of studies and historical precedence for blenderized tube feeding in the resources of my Masterclass (coming soon!).

I highly recommend you follow and read the studies of Claire Kariya of Natural Tube Feeding  (IG @naturaltubefeeding). She is a Registered Dietician who advocates for Blenderized Tube Feeding and has personally done a study about the education piece of this issue. She also has an amazing cookbook made for Blenderized Tube Feeding!

So that’s it for this round of Tube Feeding Q&A. Have more questions? Reach out on any of my social media platforms or email me at allisonrgs@gmail.com

Wanna know when the Blenderized Tube Feeding Masterclass is ready?

Join the waitlist!

allison

Sweatman

Allison is an IEP Coach, disability advocate, writer and mother of two incredible kids. She writes about special needs, blended diets, and all things mental health.

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