One of the most common questions we get when someone meets Charlotte for the first time is, “Why?”
Why a feeding tube? Why a trach? Why did she come early?
Today, I’ll tackle the “Why does Charlotte have a feeding tube?” question.
Most of this is review for you all, but here it goes.
Charlotte was born at 23 weeks, 6 days. She was so early her esophagus wasn’t fully formed. For the first week of life, the esophagus and the stomach were not connected. They grew together after she was born. What does this have to do with the tube? Nothing.
But it illustrates how completely premature she was. How every part of her was premature. Her esophagus, her stomach, her intestines, her skin, her heart, her eyes, her brain, her blood vessels, her nervous system, everything.
At two weeks, Charlotte had a heart procedure called a PDA Ligation. One of the significant side effects of this procedure is that it can cause paralysis of the vocal cords. Which, of course, happened to Miss Charlotte Amalie. With the paralyzed vocal cord, she aspirated significantly.
Initially, Charlotte had a really good suck reflex. But every time she tried to eat by mouth, she filled her lungs, not her stomach, with food. This severely damaged her lungs. Not only did she aspirate by mouth, but she also aspirated by reflux–anything that was in her belly she would reflux up and then aspirate.
The only way to prevent the aspiration was to thicken her feeds to honey thickness. Due to her poor lung quality, sucking such a consistency out of a bottle was simply too much work for her. She would get exhausted after about 5mL. Eventually, she lost all ability to eat by mouth (due to pain from reflux and discomfort from aspiration), and to this day, she refuses to eat anything orally.
After a horrendous experience with aspiration pneumonia in September of 2010, we decided to have a g-tube and a nissen fundoplication performed. The g-tube puts food directly into her stomach, and the nissen fundoplication prevents anything in her stomach from refluxing past her esophagus. I wouldn’t wish a nissen on anyone– it’s pretty awful. She can’t burp, can’t vomit, can’t vent her tummy at all. It can be very uncomfortable for her, but the nissen has literally saved her life.
There are a million reasons for a feeding tube. But here are some non-reasons for a feeding tube:
It’s not because she is a “picky eater.”
It’s not because we didn’t “try” enough things.
It’s not because she wasn’t hungry enough.
It’s not because we didn’t feed her.
It’s not because we didn’t try, we didn’t fight, we didn’t succeed.
It’s not because she “failed” to thrive, regardless of what a medical diagnosis says.
Her feeding tube nourishes and strengthens her daily. And for that- we will forever be grateful.