When People Say 'You Feed Her What?'

“You feed her what?”

The hospital dietician looks at me surprised, a vague air of concern crossing her face. She’s been called in because the nurse didn’t understand my answer to his question about what my daughter, Esmé, eats.

“Esmé gets a blenderized diet through her g-tube,” I say, slowly. This isn’t my first rodeo, and I know what’s coming.

“You mean hypoallergenic formula?” Skeptically…

“No, she’s allergic to the elemental formulas. She gets a blenderized diet. You know, regular food, just blended.”

“OK. But what’s in it?” Now she’s clearly nervous.

This is the point at which I get annoyed. I want to say “Food. Food is what’s in it.” I want to ask if she asks every parent what they feed their child or just those of us who feed our kids through a tube. I want to ask if she understands how much time my husband and I spend obsessing over establishing the perfect balance of nutrients. I want to ask if we could talk about something substantive instead. Really, I sort of want to ask her to leave, but I know this might be helpful if I can hang on a bit longer.

Instead, I look her square in the face and say, deadpan: “We blend a mixture of Oreos, Doritos and Happy Meals. That should be OK right?”

Because most 3-year-olds have consumed those things. Mine hasn’t. My child eats a textbook healthy diet: good fats, organic foods, lots of veggies, no sugar… balanced beautifully for her every day.

Now that I’ve passive-aggressively made my point, I say, “I have a spreadsheet outlining her diet and all of the nutritional components. Would you like me to email it to you so you can review it?”

“Yes, I will look it over, and we can talk in a bit about it.”

An hour later she’s back, “This is actually very good. Can we discuss a few items in more detail?”

Now I know we’ve reached the point where we might get somewhere — where I might be able to gather some more information about how best to fine-tune her diet and keep Ez healthy.

I know the dietician didn’t mean any harm. She probably had no idea that I’m the sort of compulsive and nerdy mom who keeps excel spreadsheets monitoring not only Esmé’s nutrition but also her seizures, meds, input and output. (Although, had she read our chart it would likely have been clear).

Here’s the thing, though, having a child who is medically fragile and developmentally delayed involves letting people into all aspects of your parenting. My interactions with Esmé have been obsessively monitored and analyzed almost from the first time I held her. And it gets exhausting — nowhere more so than with regard to her food.

Because it still feels like an assault on my ability to care for my child, to nourish her properly and safely.

I get it, my daughter is tiny — like below the first percentile tiny. And she’s medically fragile. She obviously needs optimal nutrition, but she is, first and foremost, my daughter. Feeding her properly is one of the most fundamental things I can do to care for her, and three years of having people who don’t understand the whole picture question our feeding choices has just worn me down.

It seems that at some point everyone has had an opinion. But it’s rare that someone can actually grasp all of the elements that come into play regarding how we feed Esmé and why we feed her the way we do. The tube part is easy — she was aspirating her food, likely since birth. She developed severe aspiration pneumonia and had cardiorespiratory arrest as a result. There was no choice but to use a feeding tube.

It saved her life, plain and simple.

Where it gets more complicated is when we discuss what goes into her tube. The majority of children with feeding tubes are fed some form of commercial formula. In our case, originally it was a prescription hypo-allergenic elemental formula. I have nothing but gratitude that these life-sustaining formulas exist; they keep so many children healthy and alive. But they’re absolutely not the answer for every child with a feeding tube. In Esmé’s case, these formulas make her ill, causing terrible vomiting, retching and unhealthy weight gain. Unfortunately, no one could have predicted this, and by the time we’d sorted it out, I no longer had my stockpile of frozen breast milk. So we started looking for alternatives and found that a number of people who are tube-fed eat a blenderized diet. Blenderized diets can include almost any food you can think of, just blended up so it can pass through the tiny opening in Esmé’s feeding tube.

When we started giving Esmé puréed fruit in her formula as a trial, we immediately noticed a change in her demeanor, frequency of vomiting/reflux and strength. When we brought our findings to our (then) new gastroenterologist at Boston Children’s, I was worried we would be told we weren’t allowed to do this, that it was a bad idea and that we should go back to status quo.

However, fortunately for us, our doctor not only saw the change we saw, but she had experience with blenderized diets and was completely supportive, helping us find resources on how to approach Ezzy’s diet, encouraging us to experiment with mixing in new foods that Ez might be eating by mouth if she was developing typically, brainstorming with us.

More than that, she was the first doctor who helped us feel as though we were driving Esmé’s nutrition, that we were the experts in Esmé and that the doctor’s job was to support us. She handed us back control over what went into our child’s body. She helped us feel like Esmé’s parents, rather than medical assistants carrying out doctor’s orders.

Thankfully, it was a fantastic answer for Esmé’s overall health and well-being.

We love making Esmé’s food. It feels like such a basic and caring thing we can do for her. We wouldn’t do it if she was healthier on formula. But since she’s thriving in this way, we truly relish in it, mixing it up every night with love, monitoring how changes affect her.

I’m actually sort of jealous of Esmé’s diet. It’s filled with high quality veggies, meat, oils, grains and in pretty astounding variety.

And who knows, maybe an Oreo or two…

I originally wrote this post for Elyn Zimmerman’s blog The Nutritionist’s Dilemma, which discusses the realities of eaters and eating in the modern world. She says of her writing, “I am committed to helping mere mortals with the colossal task of developing a peaceful relationship with food and eating… I blog about the conundrums that confound this experience in hopes of helping others to be kinder and gentler with themselves.” Please take a moment to check out her musings.

This post originally appeared on The Cute Syndrome.

Hillary Savoie, PhD, has blogged about life with her daughter Esmé since September 2012 on The Cute Syndrome Blog. Hillary is also the Founder and Director of The Cute Syndrome Foundation, which is dedicated to raising research funds for and awareness of rare disorders like PCDH19 Epilepsy and SCN8A Epilepsy. She is also the Chief Communications Maman at the Feeding Tube Awareness Foundation.  Hillary tells the story of her family’s journey through her daughter Esmé’s genes as they try to find a diagnosis in her story Around And Into The Unknown, available as an individual e-book and as part of the paperback anthology 6 of 1 Travel.