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About Feeding Tubes
Feeding tubes can be intimidating. They can also be lifesaving. Education is the key to understanding how feeding tubes can help children grow and thrive when they cannot or will not consume the food they need.
Why Does Tom Have a Feeding Tube?
You know how doctors or grandmas say, "Don't worry, he'll eat when he's ready." Most times that is true, but not every time. When Tom was about six-months-old he decided he didn't like eating and he was done with it. No amount of effort or encouragement on my part convinced him to eat. I obsessively monitored his food intake and kept excel spreadsheets to share with my pediatricians. Feeding Tom was my life for months. It was all we did and still some days I could only get him to take two ounces of fortified breast milk in a day. He was hospitalized several time for dehydration and well below the growth chart. All medical testing came back normal. It was time for the tube.
In late August of 2010, Tom ended up in the hospital for dehydration yet again. Since Tom was scheduled to go under anesthesia in mid-September 2010 for an eye exam (to check his retinas and monitor his glaucoma) we agreed to have the g-tube placed at the same time.
Living with the Tube
I'm not going to lie. The first time I ever saw the g-tube poking out of my baby's gorgeous stomach I was horrified. I was afraid it hurt him and afraid it would fall out. It just plain scared me.
The nurses at the Children's Hospital of Pittsburgh were patient and taught me how to do feeds using a pumping machine and how to care for his stoma (opening the g-tube is in). My husband learned too and we were a team. Then both sets of grandparents undertook g-tube training from us so Tom could spend the night at their house.
Now I can change Tom's g-tube myself in less than five minutes. I used to just happen to schedule a g-tube check with the general surgery department around the time his Mic-key button (his brand of g-tube) needed changed. What a coincidence! Again, patient nurses used these visits to teach me how to change the button. Eventually I toughened up and now it's no big deal to change his g-tube.
Tom went from this.
A baggy onesie is a sad sight : ( |
To this.
Look at that tummy! |
A happy, health guy on his second birthday. |
Today, Tom is one awesome tubie.
Tommy today. |
Happy feeding tube awareness week! Always nice to connect with another tubie mom!
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