Feeding Tube Awareness: Part 2 Q&A
I’m excited to answer some of your questions below! To read Part 1 click here.
Can she eat food?
Yes, she can but she doesn’t eat much. Usually only a few bites per day. All of this happened when she was learning to eat solids so she essentially missed that milestone. Currently she loves M&Ms and shredded cheese.
How do you know when she’s hungry?
She understands hunger and can tell me now that she is older. We have a feeding schedule. She gets fed four times during the day via syringe and then slowly fed continuously through the night via a feeding pump.
Do you change the tube out?
Yes. Every couple months we change it out. It’s quick and painless. The mickey button in her stomach has a small balloon filled with water that keeps it in place. There is a special syringe we use to drain the water and take it out. Then we immediately insert the new one and fill the balloon with water. There have been a couple of times where it has come out on accident but we keep an extra one on hand and try to get it in her as quickly as possible.
Will she grow out of it?
Our hope is that with time and feeding therapy she will be able to eat enough food and not need the tube anymore. It used to stress me out a lot more than it does now. I know Gods timing is best and we’ve learned to take it one day at a time.
Does she ever feel sick from it?
Yes. If I push the formula in too quickly she will get nauseas and sometimes throw up.
Are there any risk of infections or is it hard to keep clean?
The risk of infection is low because it is not sterile area. It goes straight into the stomach which has a bunch of acid that kills a lot of harmful bacteria. We clean it in the bath or shower like we would anything else.
Can it get wet?
Yes. She can swim and take showers and baths. Pools and the ocean are safe to swim in but we try to avoid water that has a ton of bacteria in it like hot tubs and murky lakes.
Is it hard to travel with all the supplies?
It definitely takes planning. We have to make sure we have enough supplies for the entire trip. It’s not something we can run to Target and grab if we need it. For a week long trip half of her suitcase is supplies such as formula, pump bags, and syringes. If we fly I keep her feeding pump and extra supplies in my carry on just in case her suitcase gets lost which thankfully hasn’t happened. It definitely takes up more space when we travel but it usually works out fine.
Do kids her age notice it?
Yes kids often ask what it is when they see it. We try to use it as a teaching opportunity. We usually say something like, “This puts the food right into her tummy! Isn’t that so cool!” And they always say “YES!” which is super sweet. Then they move on and keep playing, no big deal.
Do you ever get rude or insensitive comments?
Not really. The closest thing that I would consider insensitive is when we tell someone that she can’t eat much and they respond, “I wish I had that problem”. I know they don’t mean anything by it and are just cracking a joke. But we fight hard for her to eat so those kind of comments sometimes sting.
That’s it for now!! Thanks for tuning in y’all!!
