Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

The Gtube

on July 29, 2012

Looking at site stats, a goodly number of people end up here searching for info about Gtubes.

So let’s discuss.

The Gtube is essentially a hole that leads from the outside of Teddy’s tummy into the inside of his stomach. The hole is filled by a silicone device that allows us to put food and medicine directly into his stomach instead of through his mouth.

Teddy CAN eat. He doesn’t have any physical problem with eating. Kidney disease does make you less likely to WANT to eat, and I think his prematurity plays a role here, too – he just still doesn’t have particularly strong oral muscles and he doesn’t eat enthusiastically, vigorously, or for very long.

He wasn’t growing and it was a daily struggle to feed him enough food. Our days revolved around getting the baby to eat. I wasn’t enjoying my kid, because I was too busy worrying about how I was going to get him to eat.

I honestly didn’t resist the Gtube much. I know a lot of parents struggle with this decision, which is, I suspect, why people are out searching for information and landing here. I had already read several research studies on nutrition in infants and children with renal failure that all suggested that a feeding tube was nearly universally needed in these kids. After our nephrologist suggested we might consider one, I asked a few online friends of kidney babies about their experiences and each one said that they didn’t regret it, and they wished they’d gotten it sooner. Honestly, these two things made my decision so much easier, and I consented to the surgery a few days later.

I love it. I’ve joked several times that I could practically write love sonnets about the thing. I have never once had negative feelings about his tube. Not once. I do not regret getting it. It’s not necessarily easy. It’s kind of a hassle. It is just one more thing to deal with. But… it keeps him alive.

Because of his G-tube:

– He doesn’t have to taste the numerous nasty medicine he takes twice daily.

– We don’t have unpleasantness over medicines.

– I don’t have to spend the whole day trying to force him to eat.

– He can enjoy eating. For a kid who seems medically destined to have issues with eating (from the kidney disease), the Gtube is allowing him, for right now, to still see eating as a pleasurable activity. He eats what he wants, when he wants. If he doesn’t feel like eating, he’s tired, he’s nauseous, etc., then his food goes thru the tube.

– He can stay hydrated when he’s ill.

Don’t get me wrong. A Gtube is a last resort. Try everything else first. But if everything else isn’t working… a Gtube can be a wonderful thing. 🙂   (for more info, check out Feeding Tube Awareness’s website.)

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2 responses to “The Gtube

  1. Tabitha says:

    I love reading about Teddy and what is going on with him. I am just sorry that he[and you and your family] have to go through this. He is definitely a strong little guy. I add him into my daily prayers.

  2. savanna says:

    I have a EnteraLite Infinity feeding pump, that my 15 month old daughter used, we no longer need it. She has passed on to be with the lord, and im looking to donate the pump and bags that i have left with it, if you know of anyone on who needs it, i would be more than happy to help them out, I live in NB Canada,

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