Additional Needs

Adventures in Tube Feeding

Posted by Jennifer Arnold on 8th February 2021 Additional Needs, Advice & Support, Disabilities

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During the week of February 8-12, 2021, The 11th annual Feeding Tube Awareness Week® will be celebrated globally.

We’ve been a tube feeding family for over fourteen years.

Two of our kids, Lilly and Chance, came home from the Neonatal Intensive Care Unit with G -tubes.

Chance was able to have his removed when he was three years old, and Lilly still has hers.

The decision to place a feeding tube was not easy, but it has been a lifesaving one, and both kids have thrived since.

I have had people ask me, "Why can't you just make her eat?" of my now 14-year-old daughter.

Like it’s that simple.

I can't tell you how much time I spent in the NICU at UC Davis, trying to bottle feed her.

I watched her gasp and sputter and writhe as I tried to get her to take even a couple of ounces.

I watched her vomit so much that she started losing weight, and I watched them try formula after formula, seeing if one would "do the trick.”

The same thing happened with my Chance, who is now ten.

We have gotten some stares when we have had to feed the kids in public, although I have to say we have not had any nasty comments or negative reactions that I have heard about from other parents of tube feeders- we have been lucky in that regard!

After Lilly was born, life as we knew it turned upside down.

When my oldest was a baby, it was relatively easy to go anywhere with him.

Just pack a diaper bag, a few toys, and you're good to go.

Traveling anywhere with a tube-fed child requires extra planning, but it's far from impossible.

We can't exactly be spontaneous anymore, but we do get to have some adventures!

Before Chance was born, we took a cross-country road trip with our (then) three kids to Massachusetts for a family reunion.

That trip took months of planning, but it was well worth it.

I can only speak to our situation, but I would estimate that when Lilly and Chance were both tube fed, the feedings took 13-14 out of 24 hours each day.

There’s also food preparation, G-tube cleaning, venting (a method of "burping"), and administering medication if needed.

Tiny backpacks made for feeding pumps made it possible to feed on the go, but we could never let them out of our sight because one of their favorite things to do was unhook themselves from the pumps.

No matter what we tried, they still managed to do it or make a great attempt.

Chance has always been interested in eating- even when he was one hundred percent tube fed.

He would chew on clothes, “chewies” that he got from his occupational therapist, and would try and grab food out of our hands all the time.

Lilly was the complete opposite.

She wanted nothing to do with food and turned her face away at any offers of food.

We also tried a blended diet with her, and she didn’t respond well to it.

Finally, when she was about seven years old, she started drinking out of a sippy cup.

Now, at age 14, she is taking small bites of soft food here and there.

She may never be able to eat fully solid food because of the anatomy of her jaw; she is unable to chew solids well enough to break them down to swallow.

Every time she’s tried to eat anything more solid than yogurt, she ends up choking on it.

Every tube-fed child or adult has their own story.

Another question that I have heard often is, "How long will she have to have the tube.”

No one can answer that definitively.

It depends on the person and the person's condition.

I have two kids with the same condition, and one was able to have his feeding tube removed early on and now eats more than his two older brothers combined.

The other will most likely have hers for life.

Tube feeding has been part of our life for so long that it’s our “normal” now.

Lilly doesn’t know life without her feeding tube, and Chance doesn’t remember life with his.

All he has to remind him now is the little scar that he calls his “other belly button.”