Address Myths about Tube Feeding. We all have heard things from family and friends that actually aren’t true about tube feeding (no, a child will not always eat if they are hungry, etc.). This is an opportunity to talk about what is fact, or real about tube feeding.
As a parent of a child with a feeding tube I have been told some crazy things:
- If you fed your 9 month old doughnuts they would eat
- There is nothing "wrong" with her, she is just short
- I am POSITIVE that thing will be gone soon
- Have you tried xyz thing that has never been tested and has no proven results but I read about it on the internet
- Things will just fix themselves in no time
- I would put my kid on a leash too
- Does she really NEED it?
Trust me we have tried SO many things so Jillian could eat "normally." We had a period of time before the tube where we fed her an ounce and a half bottle every 2 hours around the clock. When I saw those two lines on the pregnancy test this was not what I pictured. But we love her so much none the less!
Jillian has a tube because she can not take enough food into her stomach and keep it where it needs to be to grow. She also aspirates into her lungs making it unsafe for her to eat. Tube feeding keeps Jillian alive and makes it so she can grow and develop.
It is not a cure all. The parts of her body that did not work properly before still don't work properly now, but with a tube she is able to get nutrients in where she is able to best process them. With Jillian, we still don't know what her underlying cause to all of this is.
The truth of the matter is that her tube keeps her alive and for that I am VERY grateful!
Life with a tubie is not always easy. In the past two years Jillian has had over 100 doctor visits, 9 hospital admissions,weekly therapies, and 5 surgeries. She has to go into interventional radiology every 3 months to have her tube changed where we have to dress up in a led suit, help hold our child still on a table awake as a radiologist takes out her old tube and uses a type of x-ray to help place a new tube. She has had more tests then I can remember and been sick more times then I care to count (right now we are going on a 6month streak where she has gotten a hard hitting illness every month) We fill her pump every 4 hours for 18 hours of the day. We have had to hand our baby over to surgeons and have to walk to the waiting room the other direction (just writing that sentence made me tear up) . We have had bills that are crazy and had to turn to the state for a second insurance for our child. We have had to adapt many typical kid things to make them work for her needs. We have had people stop spending time with us because of Jillian's stuff. Juggling a kid with a tube and normal life can be HARD sometimes.
But trust me, it is not all bad. We have the privileged to being the parents to one AMAZING little girl. She lights up the world. She makes us stop and be thankful for the little things. She teaches us about what really matters. She turns us back to HIM. People sometimes say that God gives kids with special needs to special people, but really I think we are the ones who are the most blessed for having Jillian in our lives.
What this was not the life I pictured when those two little lines came up, at this point, I could imagine life any other way, because Jillian's struggles have made her who she is. People ask if she does not like the tube, and honestly it is all she knows. It is her normal and she is proud to show people her tube, and I am so grateful that God made someone smart enough to invent a tube that could feed my child.
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