I never imagined in a million years that I would have a child that would get fed through a feeding tube. Yet, HERE WE ARE! So... how in the world did we end up here?
Easton was born a strong LITTLE boy, all 5 and a half pounds of him. Things were going well for the first few weeks. We battled a bout of thrush and some reflux, but he was gaining weight. Then, that weight gain came to a grinding halt.
Easton had always had strange eating habits. At first we had latch issues. So, we breastfed and “topped off” with pumped breast milk bottles. Easton sounded like he was GULPING when he ate. Yet, he would only eat a very small amount. As time went on, weight gain plateaued and Easton’s reflux and fussiness got worse. It became a constant struggle to get him to eat at all. He wouldn’t nurse, drink from a
bottle, cup, or spoon, he would struggle even with drops from an eye dropper. He was always SO hungry. Eventually his weight gain started to turn to weight loss and our pediatrician referred us to Children’s Hospital in Minneapolis.
We got to Children’s Tuesday, February 13th. We went through many tests. We saw a speech therapist, a GI specialist, the ENT team, and so many more. Easton had blood drawn, a swallow study, and eventually a NG feeding tube. At the time, he was only able to eat about 5oz orally, which is FAR below what is needed to gain weight. Through the NG (nasogastric) tube we were able to bypass his eating issues and get volume in. He was so strong through all of this. The little man didn’t even cry when they drew his blood!
By Thursday, it was determined that Easton needed to undergo a surgery. This surgery was exploratory in some ways. The team of doctors planned to scope his throat, lungs, and stomach. They would also place a g/j tube to get him the calories he needs in the future. While it was a fairly routine surgery, they did not know what they would find. The surgery lasted about an hour and a half. The amazing Children’s Hospital surgical team kept us updated through the whole thing. The team determined that physically there was nothing wrong. They kept Easton so comfortable.... maybe a little TOO comfortable (see pic below)!
The final diagnosis was severe reflux and uncoordinated swallowing. The reflux was irritating his throat so severely that it would spasm. He also had trouble contracting the correct muscles to swallow which causes him to aspirate. Aspiration is when you breath things into your lungs and is very dangerous. Aspiration creates a huge risk for infection. This is like the feeling of swallowing something “down the wrong tube” every single time you take a drink. After awhile Easton’s throat and lungs became so desensitized to it that he would no longer try to cough it out and did not want to eat. These two problems exasperated each other and created a deadly cycle. They determined it was not safe for Easton to eat by mouth at this time.
And that is where the feeding tube comes in!
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