Thursday, February 9, 2012

Life with a Tube

When Jack got his feeding tube, we immediately felt a sigh of relief. I remember the week after his surgery, we went on our first family vacation together and we had such a good time. Sure, we had a steep learning curve when it came to how to use the tube (ALWAYS close the medi-port or you get formula spilled everywhere, including all over the carseat!!... learned this lesson while driving through Idaho). But we very quickly caught on. This tube thing was really easy. Especially compared to the alternative.

The stress of Jack not eating and of him continuing in his downward spiral, was taken away. I felt light as a feather and we quickly fell into our new normal. Gone were the hours spent trying to get Jack to take a few sips or a couple bites. Instead, we got our routine down. It was still very time consuming, but not in the same, filled-with-dread, sort of way. Through a lot of trial and error, we found a good system of feeding. We knew that Jack needed a certain number of ounces of formula a day to grow. I don't remember exactly, but we soon split those ounces up into 5 or 6 "feeds" a day where we would gavage the formula into his tube. We would do this over 20-30ish minutes, so it wouldn't be too much immediate food in his belly. We got Jack his own special chair, would pop in a DVD and sit right next to him, holding the syringe filled with formula. You learn quickly to hold it in just the right way so the formula will go in slowly in the belly.

Many people with feeding tubes get fed very, very slowly, with a medical drip, throughout the night (and some all day long, too). We wanted to try our hand at feeding Jack at normal meal times throughout the day, if his body could take it. Looking back, I am so glad we attempted this and that his body allowed gavaging. It was much easier for him to learn to eat during the day when the time came.

One of the unfortunate side effects of tube feeding is increase vomiting. There is just something about placing a feeding tube that increases the gaging reflex and vomiting of some. Jack was one of them. He puked almost daily. We got so used to the puking, that we could tell immediately when he was about to puke and we'd rush him towards the toilet or at least, to a non-carpeted area of our house for easy clean up. It was always very frustrating to have Jack puke up his entire lunch after just spending 30 minutes giving it to him.

Keeping a baby from playing with the tube, a sort of alien object sticking out of their belly, is super hard. Babies are naturally curious and we had heard of so many kids accidentally pulling their feeding tube out. We stocked up on plenty of onesies.

Tube feeding is very time consuming as opposed to eating orally. Over time, we calculated that we were spending around 6 hours a day just feeding Jack. Both Jon and I became the best multi-taskers... check email... surf the web... read a book, all the while feeding Jack. We had to find something to do, or we'd be stuck watching way too much Baby Einstein. I'll admit, these times could be very boring, but as long as Jack was getting nutrition, it was worth it.

A tube-fed life is very isolating. It's super hard to find a babysitter that is willing to learn how to use the tube and you can't just trust anyone to do it. Because of that, we found ourselves in a much smaller world. One that revolved around Jack's feeding schedule. We couldn't just go out on a date or find a sitter for Friday night. In fact, there was only one saint of a woman (besides my parents) who offered to learn how to use the feeding tube so we could go out. I will always remember her kindness. Scheduling in nap times, play time, and therapy was always a struggle. There is only so much you can do in a day.

Just as quick as we got Jack's feeding tube in, we were dreaming of the day where we could take it out. That day still hasn't come yet, but as Jack is eating more and more, I can start to imagine a time without it.

 All in all, with the good and the bad, it has been such a literal life-saver for us.

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3 comments:

Nik, Lindsay and Pierce Franks said...

I love reading your comments about g-tubes. It has really been so great to have a better understanding of what they entail! I had to laugh at the multi-tasking comment. The only way we can get P to finish the last 2 ounces of each bottle (and you know us micro mommas will do ANYTHING for an extra ounce or two!) is to turn on the Baby Einstein. I've gotten quite skilled at holding a bottle, an iphone (that plays the Einstein clips) while doing something for myself- usually reading a magazine or watching tv.

Julia said...

Colin loves Yo Gabba Gabba and Leap frog stuff so we would put videos on or I read to him or play Pandora baby stations!! It's kind of funny how all of your posts really hit home!! Sometimes I feel as if I could have written your blog!! You really do a fantastic job of describing your experience!!! Jack looks terrific!!!

Gaby said...

You are such a good Mama Jessi! It takes so much love and patience to do your job.
My 5 month old son has really bad reflux and it's frustrating to feed him and have him spit up half of that feed so I can relate (on a MUCH smaller scale I know.)
Both my boys were on nose gavage feeding tubes in the NICU for a short time. As hard as it is to see the tube...it does take the stress off just a little knowing that they're being nourished!@