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Why You Don't Need to Stare at My Child's Feeding Tube With Concern

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I’d love to tell you about our lives with my son’s G-tube, a feeding tube that saved his life. In August 2013, C was slipping away from us. He essentially stopped eating the month before. By the beginning of August, he had become weak and lethargic. We were told to bring him to Children’s Hospital of Wisconsin, where he was admitted and given an NG tube.

An NG tube is a feeding tube inserted via the nose and placed down into the stomach. My son has sensory processing disorder (SPD) and hated the feeling of the NG tube, the tape on his face to keep it in place and the fact that we had to measure the outside of the tube before each feeding to ensure it was in its proper place. We lasted two weeks with the NG tube before his G-tube was surgically placed.

It wasn’t until October 2013 that we received a diagnosis. He had delayed gastric emptying (gastroparesis) and his motility was severely delayed. That means his stomach doesn’t contract to push food into his intestines. This diagnosis explained so many things about his childhood. I felt like I finally understood my child. I was elated to know and devastated at the same time that we had spent nearly two and a half years not knowing this about him. He was in pain and discomfort that whole time. Food would sit in his stomach, causing discomfort and reflux. He came to associate food with pain.

In the next few months, we changed from formula feeding to an organic blended diet. We saw him grow physically and cognitively.

The truth about tube-feeding is that it saved my son’s life. Our son is with us because feeding tubes exist.

It’s not always convenient or easy, but the fact is that it is just a different way of eating. You and I eat with our mouths; my son eats with his tube. The next time you see someone with a feeding tube, there’s no need for concern or stares. The truth about feeding tubes is that they are simply another way of eating.

Kristin.2-001

Follow this journey on Little Mama Jama.

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Originally published: December 15, 2015
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