A Month of Thankful: Day 4

Celia and Damien's Tubeys

Never in my life did I expect to be thankful for feeding tubes. Tubeys never were something we anticipated; my mother taught me to always read the fine print before you signed your name, and tubes were not on the forms anywhere. Nonetheless, I feel much like the original Mrs. Noah - who probably didn't sign up for everything in pairs, either. We have two shipments of gear every month, two bags of formula to prepare every morning, two tubes to keep track of when they need replacing, and two pumps taking turns beeping at odd hours of the night. We have even been lucky enough to have two kinds of tubes for each child! The "Tubey Buddies" even have a new joint nickname: The Twobeys.

Sure, it's been rocky at times. And "Put a feeding tube down my kid's nose" never was on my bucket list. It's a handy skill to have, I guess -- it's never a bad thing to learn something new. I never expected to have a conversation with people across the world about the merits of one brand of g-tube button versus another. If you want to know the difference between an AMT mini and a MIC-KEY and a balloonless Bard, I'm your gal. Just don't ask me to remember to pick something up at the grocery store--my mind can't retain the useful stuff.

All kidding aside, these two tubes have kept my babies alive when they just physically could not consume enough nutrition. Having the tubes has kept us out of the ER many times, because we can run fluids slowly when they are sick and not depend on them being willing to drink.

Having the tubes has allowed them to be normal kids. Sure, each often has a backpack loaded with pump and formula, but they can do just about anything their brothers do. Their brothers can chase them to play tag and beg for freedom, instead of a parent chasing the with a cup of formula begging "Just one more gulp."

The tubes have expanded my circle of friends. There are a number of dear people that I have been blessed with because of our journey - Cristi, Meg, Amanda, Amy. They have offered their love and support when things were rough. When we first started the process to have Celia's tube placed, I only knew one other mom with tube experience. Ahuva talked me off the proverbial ledge more than once, saying no, it's not "normal" but once you get the hang of it, it's YOUR normal. And she was right - tubes have become so much a part of our normal that when Celia recently heard a pump beeping, she popped her backpack off to investigate -- and it turned out to be the child's pump a row over beeping. When Damien got his first NG tube, the other kids wanted to know when he was going to get a "real" tube - a tummy tube like Celia's. Once he had his "real" tube, we started counting down until he got the "good" button-style tube.

Some kids drink with straws in their mouths. Mine now drink with them in their tummies. They are growing and thriving and doing things they would not be able to do without their tubes. So tonight, I'm grateful for tubeys.

NG, Round 2

With the "Good Real Tubey"