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Monday, February 10, 2014

FTA Week 2014-- Day 2: Feeding on the Go

Today's topic: Share your tips for feeding on the go or in public! Where have you tube fed? Talk about the most unexpected places you've done tube feedings. 

One of the things that I was uncertain of in the very beginning before we left the hospital with the NG tube was how difficult it might be to leave the house with Raya attached to her feeding pump. Or if it would even be possible given that the pumps they'd been using at the hospital were large, clamped to IV poles, and didn't seem to hold much of a battery charge when they were unplugged from the outlets. (but we can talk about the crappy pumps hospitals use another day...) When the rep from our home health supplier came to drop off the feeding pump we'd be taking home, I realized that we would probably have some mobility due to the fact that the pump was smaller than the hospital pump and he brought a backpack along with it. That pump and backpack did make it possible for us to leave the house and be gone during times when Raya needed feeds. I remember the first time I left the house with her for an evening. She was probably about 2 1/2 or 3 months old and I desperately needed to get out, so I went to a little get-together with some ladies from church. I put formula in the pump, loaded the pump into the backpack, strapped Raya on in the Moby wrap, plugged her in to the pump, and away we went. It felt SO good to be out & about and doing something normal again after a few weeks of medical craziness!

That first pump (the Kangaroo Joey by Covidien) served us well. It worked. It was touchy, it was positional, it was a bit too easy to get air in the line or cause pump errors, but it worked. Until Raya started moving around more.
As nice as it was to have the option of putting the Joey pump into the backpack and leaving the house (or just not having it clamped to the IV pole), it was still fairly cumbersome and as we later learned, NOT the pump you need when you have a mobile infant or toddler! Thanks to an audiologist that did a hearing test on Raya during that summer, we learned about the Infinity pump and were able to switch.

What does all of this have to do with tips about feeding on the go? This is my biggest tip for feeding on the go: If you have a small child who is mobile or a school age child on continuous feeds, you want the Infinity, not the Joey. (sorry, Covidien...)

Raya started wearing the Moog Enteralite Infinity pump in the Super Mini backpack for short periods of time when she was only 7 months old. She's 4 now and I still can't imagine her wearing the Joey around all day, but that Infinity doesn't slow her down at all.
(this was during her phase where her tongue was hanging out most of the time and kind of off to one side)

That little bitty pump and little bitty backpack have made it possible for Raya to be just as mobile and busy as any other kid. Since she spent many, many months on around-the-clock continuous feeds, she has been fed anywhere and everywhere.

Tube feeding does not have to restrict a child (or adult) from enjoying the activities of life! Heck, Raya has even been tube fed while she was swimming! (talk about getting funny looks from people while I followed my toddler around the kiddie pool on a "leash"...) She can run and jump and play and do somersaults and go to school and ride horses and ride her tricycle, and pretty much anything that any other kid her age can do.

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