Coping with Feeding Tubes

Today's #feedingtubeawareness week topic is on Coping:

Share how you and your family cope with the challenges of life with a feeding tube. What has made the journey easier?

Our daughter Ellie has had her feeding tube for 8 yrs, since birth. For us the most challenging part of life with a feeding tube happens to be on the mornings we need to get out the door the quickest or if the pumps have not been charged the night before. Also having one child with a feeding tube has reduced the challenges greatly.

When both Zach and Ellie were feeding tube dependent, the biggest challenge for me was how the kids were fed. Zach was bolus fed and Ellie continuous fed. I tried feeding both kids the same way and this did not work out at all. Zach screamed from hunger with continuous feeds. Ellie screamed because her stomach could not handle the volume of the bolus feeds. I eventually figured out what was best for each child and we worked around it.

To help make getting out the door quicker we have her formula recipe split into 3rds and mix using shaker cups. This allows for just around 500ml's in each cup. On our latest running days we simply pour her milk into the bag and place the empty cup in the fridge. Once in the car, the bag is primed and pump set, then started. If we are going to be out for a while I take her shaker cups with only the water and oil, and have the formula pre-measured in a ziploc baggie, then mix as needed.

With our daughter being the youngest, all our kids know how to help mix her formula, help with tube extensions, pumps, and which rates for day or night.

Ellie has a very good friend that has made her feeding tube journey easier for without knowing she was. This little girl one day decided that when ever she is playing with Ellie, she too is going to wear a little back pack. These two girls run and explore our housing area (on base) with their backpacks on and have been spies, going on picnics, hunting for (monster) footprints (they claimed) and had many other "backpack adventures."

Having a friend like this can do wonders for a tube fed child :)