‘The very best thing we could have ever done.’: Special needs mom raises feeding tube awareness

“It’s not giving up.
It’s not defeat.
Or laziness or a complete failure.

I felt all of this (and more) when we were making a decision to place a feeding tube. For him, the decision to place the tube came because he was failure to thrive with a severe oral aversion.

We were basically force feeding 10ml syringe after syringe and counting every single tiny calorie. We had a daily notebook that read 2 ounces of breast milk, 10mls of formula. That was it. Day after day, praying he would eat more.

I would take him to weight checks constantly. I met with lactation consultants and dietitians. I would ask for advice on how to get him to gain weight in my social media groups.

I was told to add Duocal (a tasteless calorie booster), or peanut butter ice cream shakes, avocado, oil… because it worked. But it didn’t. None of it worked for us and I felt like such a failure.

Placing a feeding tube felt like giving up. It felt like I wasn’t trying as hard as the others who avoided placing a tube.

Special needs mom shares photo of her son with rare condition smiling big during playtime
Courtesy of Melissa Schlemmer

After 10 minutes with a gastroenterologist, she was ready to admit him for surgery that day. We didn’t have a choice if we wanted him to live. And I can tell you with confidence it was the very best thing we ever could have done.

I no longer cried countless tears over calories.

I no longer looked into my child’s terrified eyes when the bottle would come near him.

I no longer frantically called my mom asking if 2 ounces was all he really consumed that day.

I stopped staying up all night, trying to find high fat foods to syringe into his wailing mouth while we both cried.

Because you know what? That. That was worst case scenario.

A feeding tube isn’t failing. It’s thriving.”

Special needs mom makes a sign that reads "Placing a feeding tube is not worst case scenario"
Courtesy of Melissa Schlemmer

This story was submitted to Love What Matters by Melissa Schlemmer of Forest Lake, Minnesota. You can follow their journey on Facebook and Instagram. Submit your own story hereand be sure to subscribe to our free email newsletter for our best stories, and YouTube  for our best videos.

Read more from Melissa here:

‘You can do all the same things ‘so-and-so’ did and your child still may not achieve the same things.’: Special needs mom urges ‘go easy on yourself’

‘She said, ‘I know I shouldn’t complain, because as you know…it could always be worse.’ Wait a second. What?’: Special needs mom says ‘my son is not your worst-case scenario’

‘The neurologist called. ‘I’m 90% sure your son has Congenital Disorder of Glycosylation. Do not google it.’: Special needs mom urges, ‘Life can be beautiful, even when it doesn’t go as planned’

‘Shhhh, just keep walking.’ You taught her NOT to see my son.’: Special needs mom urges ‘ask the questions’

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