Day 3- understanding life with a feeding tube

Day 3 of feeding tube awareness week and we are sitting here in pre-op getting ready to switch Kai’s peg-tube to the mic-key button!
It is so hard to believe but it’s been 6 months since Kai first got his feeding tube. We have learned so much and he is now consistently growing at an appropriate rate!

Topic – Understanding Life with a Feeding Tube – Explaining a day in the life/daily routine of tube feeding and all it requires.
Lately Kai has been eating a lot by mouth so we mostly use his tube at night, which makes it a lot easier.

Our days are filled with therapy, play dates, and keeping on top of his meds. When Kai is eating well, we spend about 30 mins. in the high chair for each meal. When his apatite is not as good it can take up to an hour and an assortment for 3 different meal options per meal! Feeding Kai is a BIG part of our day! In between meals he is drinking from a bottle again which has helped a lot.
We make Kai a blended diet of fresh foods for his tube. He also gets donated breastmilk thanks to a few extraordinary, generous moms!
After Kai goes to bed I cook and blend up some food for him. At 9pm I give him 4 ounces of donated breastmilk in his tube pretty quickly over an hour or so. Around 10 I add in the food and turn down the rate on the pump. I like to give him a few hours of true rest without the pump in the beginning of his sleep. I also start his tube later because that way it does not wake us up to early in the morning! We are lucky that he does not require a ton of supplementation right now. The less he eats during the day, the more pump time we have to add in to our day.
When Kai needs more supplementation through his tube our days are a little more complicated. Having him ‘plugged in’ during the day makes every little move just a bit harder and more time consuming. One of my favorite day time feeding times is in the car. Of course as soon as I start driving the pump WILL start beeping with an error message and we have to pull over and try to figure it out!

Our life with a feeding tube means, LOTS of beeping error messages, the pump doesn’t always like our blends or breastmilk! Syringes can be found in every bag, pocket and car door! Making twice as much food everyday, just in case he may want to eat it!


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