Our Journey to Blenderized Tube Feeding

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When Rosie was almost six months old she was still in the hospital. She had endured two open heart surgeries and countless life-saving, but traumatic, medical interventions.

Our beloved medical team had prepared us for the probability that Rosie would need a g-tube, a type of feeding tube that allows us to feed her directly into her stomach. When the time came to place the tube, we were ready.

There was grief associated with placing the g-tube. My husband and I had witnessed Rosie eat by mouth and even breastfeed, but after all she’d been through, those skills we gone. It was really hard. We felt extremely alone in this sadness, but we knew Rosie needed the tube in order to thrive.

Rosie got her tube and we went home a couple of weeks later. We had a very strict schedule of medications and g-tube feeds. I like to tell people that after a hospital stay that long and intense, you basically bring the hospital home with you.

That’s what we did. Our home became a hospital.

We woke up at 4 am every day to give her a medication that had to be given two hours apart from the medication we gave at 6 am. These were just two of the twelve prescriptions we were given every day.

When Rosie was around ten months old, I began researching what to do when I ran out of breastmilk. I’d been pumping her whole life and besides a teaspoon of formula to boost calories every few days, she’d never had anything else but breastmilk.

As I did my research about what to feed my daughter, I did what I do for every food that comes into our home: read the ingredients. I was trained to do this in an undergraduate-level nutrition class. I got even better at it when I completed an elimination diet to find my own food sensitivities.

I was a label-reading machine. I still am!

Something felt wrong about critically analyzing every label of my own food choices while exclusively feeding my daughter a product made mostly of corn syrup and vegetable oil.

I had developed a value of being wise about what our family consumes on a regular basis. Food is deeply personal. I also have the privilege of the time, energy, and financial stability to buy and prepare fresh food for our family.

Eventually I decided that feeding Rosie exclusively formula went against my own personal values. Besides that, I would not have been living in my integrity, given what I’d learned and started applying to my own lifestyle.

Let me take a moment to offer an emphatic “you do you” disclaimer. I am not here to tell you or anyone else what to feed your child. I am not here to tell you to switch anyone to a certain diet. I am CERTAINLY not here to shame any parent who feeds their child formula. Please don’t hear what I’m not saying.

I am here to advocate for every parent to be informed of their options when feeding their tube-fed child.

Period.

Let me tell you a little story. While being trained about feeding Rosie via g-tube I was told by a nurse, verbatim:

“Only medications, water, and formula can go into the tube. Absolutely nothing else…”

“What about breastmilk?!…” I responded, stunned and afraid my hard pumping work was wasted.

“Oh, right. Yeah, breast milk too.”

Sigh.

I was an impressionable, traumatized new mother who just wanted to feed my child a good diet to support her journey to overall health. Even breastmilk was left out of the options, so OF COURSE real food wasn’t going to be considered.

I tell this story to present the reality that medical teams are not offering a blenderized diet as an option at all. In fact, most parents (and I mean a vast majority) are advised against it. As you can see, I was originally advised against it. I am not the exception here.

As I did my research and became more and more convinced that a blenderized diet was the only way we were going to feed Rosie, I sought approval from a select few doctors who I believed mattered most: her pediatrician and her cardiologist.

They both had essentially the same response:

“You can do it if you want, but I don’t think it with make a difference. It’s going to be a lot of work for you. It sounds like a lot of stress.”

I do not fault them for telling me this. They really, really cared about me. This I know for sure. I treasure these doctors and I’m so grateful for their work with our family for Rosie’s health. I know that their caution against the blenderized diet was mostly to protect me, a very stressed and busy mother to a medically complex baby, from causing more stress on myself.

“I’ll be more stressed if I don’t so this,” I responded.

Because we had a good relationship, they trusted me. Because I value their input, I sent them my detailed plan about how I was going to transition Rosie to the blenderized diet. And we were off to the races.

I also had a supportive RD from the CVICU who allowed me to consult her a couple of times when I had burning questions. Other than that, I made a plan and went for it.

I was very systematic in the beginning, serving small amounts of food and waiting a few days between new foods. Other than a bad reaction to dairy, everything went smoothly, and by the time Rosie was 13 months old, she was on a fully blenderized diet of real food.

Rosie’s blenderized diet offered her variety and optimal nutrition from the beginning. I was stressed sometimes, trying to find our routine and make sure she got everything she needed. But now, three years later, this is something we don’t even have to think about.

We recently saw that beloved pediatrician from before and the most magical thing happened.

He told me that he believes Rosie’s blenderized diet of real food has been an asset to her good health. He affirmed our decision. I thanked him and we talked about the future of tube feeding and how to get this information into the hands of parents who want it.

Here is the actualy state of things, though. Many families don’t have the privilege of making this decision when a medical team says “no.” Most kids who are fed a blenderized diet of real food are fed it out of necessity. They’ve tried ten or more formulas and don’t tolerate any of them.

I can’t tell you how many moms have told me some version of this statement:

“The day we switched to blended food was the first day my kid didn’t vomit in months.”

Let that sink in, friends.

I’m grateful this is not Rosie’s story, but I sure as hell don’t want any more kids to have to suffer this way. I want more parents to have the option to do this for their kid with the support of a solid medical team.

I believe it is possible and I’m fighting for that for every family of a tube-fed individual.

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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