Photo courtesy of Hillary Savoie

My Daughter Has A Feeding Tube, & It Can Be Pretty Great

You know that feeling… the one where your kid is sick and has fallen asleep early, they are clearly burning up with a fever and a bit dehydrated? You know how you find yourself pondering whether to wake them, coax them to swallow a bit of Motrin and a glass of water or whether to just let them sleep?

You do?

Yeah, well, I don’t.

When confronted with such a situation, I just sneak into my daughter Esmé’s room while she sleeps, fish the end of her feeding tube extension out of the top of her pants and deliver whatever she needs directly to her stomach. Like a boss.

And, as long as I do my job well, Esmé keeps sleeping. Like an even bigger boss (namely, my boss).

You know how you wonder how much milk/food/water/medication your kiddo actually consumed today? Or how your kid wants to eat only pasta with butter and nothing that resembles a non-potato-based vegetable? Or how they get dehydrated because they can’t be bothered to stop for a minute and drink something? I’ve got that covered too…

Surgically-placed abdominal feeding tube for the win.

By now, I’m pretty certain you’re jealous of my kid's feeding tube. Maybe, just maybe, you might be squeamish about having an extra hole that passes directly into your kid’s stomach. And, obviously, I know you’re not jealous of how we got it — because failure to thrive and cardiac arrest isn’t the path a person wants to take to get to the delight of the feeding tube. But, let me tell you, a delight it is.

My daughter’s 1,347 calories? Not an Oreo, Dorito, or McDonald’s fry to be found in there.

Here’s the thing, I know exactly what my kid eats. I know that she gets exactly the amount of water she needs for optimal kidney function. I know the precise number of milliliters of what went into her body and, with the help of my trusty excel spreadsheet, I can translate that to her exact calorie intake — which I use like armor against the constant questions of why she’s 8 years old and still so damn small. “She may be 32 pounds, but she’s consuming 1,347 calories per day,” I say. “That should sustain me.”

Because it is true — it should sustain me (physically, but certainly not emotionally, tho TBH).

I watch parents pleading with their kids to just please “eat some of this…” and then, as their kid pushes that option onto the floor, the queue of other choices parading past them, only to become so much floor food. That fear starts rising that said child may only ever consent to eat food options the parents would never want admit to in public. But Esmé never demands a different blend through her tube. My daughter’s 1,347 calories? Not an Oreo, Dorito, or McDonald’s fry to be found in there. The things my daughter consumes? They would make your local co-op shopping aspiring-health-nut friend giggle with delight, because those calories are power-packed with Omega oils, organic veggies, vitamins, and pro-biotics. In fact, her diet is so good that her pediatrician recently suggested that, perhaps, just perhaps, a blended Oreo or two pushed through the tube might help her put on some weight…

Jealous yet?

I know, right?

This little bitty tube has kept my kid alive for eight years.

Here’s the thing… that’s not even the best part. The best part is the accessories: Cloth tubie-hugger pads that offer adorable hidden monsters and flowers. Sixty-milliliter feeding syringes that double as squirt guns and tools for making lacy crepes. The jaunty spray of blended diet decorating my living room ceiling (or the shoe of an unsuspecting stranger in the mall).

I’m just kidding, though. All that is pretty great and all. But the best part is that this little bitty tube has kept my kid alive for eight years. And, even though I know you want to steal it from us, I'm never letting it go anywhere.