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What It's Like to Tube Feed a Child

What It's Like to Have a Tube-Fed Toddler

I'm not new to this whole motherhood gig. I'm on my 14th child and 11th toddler (three kids were adopted as teens). Life with a toddler is always exciting, but having my first tube-fed toddler is moving things to a whole new level.

For instance, have you ever tried to potty train a toddler with eight inches of tubing and port sticking out of his tummy? Eight inches of tubing to keep out of the toilet, out of the poopy diaper, and off of the dirty bathroom floor?

My son has only had his g-tube for six weeks. So far I've fed him at the zoo, at Costco, at church, and in the van traveling to and from doctor's appointments. His port has popped open and pumped formula all over our bed. I've spilled his stomach juices onto the couch. He's opened his medicine port midfeeding to gingerly lick the formula to see what it tastes like. He's weathered two infections at the site and the removal of granulation tissue.

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It's a whole new world, that's for sure. 

It's also probably the best thing that has happened in Apollo's short life. 

Apollo was born with a double aortic arch, an extremely rare heart defect. Despite feeding and respiratory issues from birth, his condition went undiagnosed for 18 months. By the time we finally had an answer to his health problems, Apollo had weathered RSV, pneumonia, failure to thrive, and a choking incident that required a call to 911 and an ambulance ride to the hospital.

Apollo's double aortic arch was divided when he was 20 months old. Six weeks later, the doctors found another misplaced vessel in his heart, one that compresses his esophagus and that is inoperable. A week later, Apollo's g-tube was inserted and we were able to feed him enough calories for the first time in his life.

And so we adjust to the ongoing adventures with a tube-fed toddler. His 12-year-old brother, Enoch, has learned to do feedings by himself. We can now put medicine directly into his stomach — no more fighting with a flailing toddler. Apollo has adjusted to the idea of a foreign object hanging out of his body, and the other kids have learned to plan their days around Apollo's tube feeds.

A heart defect and g-tube weren't what we were planning for our 14th child. But we've learned that nothing has really changed. Apollo is still Apollo, and the adventure of life in our large family continues.

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JuliaMcAllister824 JuliaMcAllister824 4 years
I love your blog post. Not looking forward to the potty training days with a g-tube. My son is just about to turn a year old (although I expect potty training will be years down the road, as he has been sedated and intubated for 4 months straight now, missing out on a lot of his baby-hood developmental milestones)... He has HLHS and an AV Canal Defect, as well as Trisomy 21. I love having the g-tube for meds, for sure. I have a two year old, giving him meds is almost like face painting. :) Much easier with a g-tube. Has he done pretty well with leaving it alone (other than the licking?) Loved your post!
MarlanaCollins MarlanaCollins 4 years
My son also had a gtube, but had it removed at 12.5 mos. But, I took him everywhere and let him experience everything that I had with my older daughter. Sure, some people may have gave us strange looks when we were out feeding him in public, but hey, he shouldnt have to miss out on something just because that is the only way for him to get enough calories. Good for you for doing the same!!
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