Thriving Success

On a tell-all trip down memory lane, Minnesota’s Melissa Schlemmer reflects on how far she’s come since her child had a feeding tube placed.

I recently found a notebook with the feeding log we used to keep for our then-newborn son, Christopher. It brought me right back to a time when we were at our wits’ end, syringe-feeding him when he refused to take a bottle, writing down every single millilitre we were able to get him to swallow. There were days when his total intake across 24 hours was less than five ounces.

I was so desperate for Christopher to gain weight. I badly wanted to see the scale move in the right direction. I was aware that feeding tubes were not uncommon for children with our son’s condition, but I was new to the world of medically complex kids and didn’t know what I was doing.

When Christopher was diagnosed with the dreaded ‘failure to thrive’, I did what many worried mothers do and sought help from others who’ve ‘been there’. I turned to social media, hoping that parents of children who share our son’s rare genetic condition – PMM2- CDG – would be able to offer me some advice.

I was met with every single way to try and avoid a feeding tube. The string of comments under my question post told me that peanut butter, avocado and milkshakes would solve my problem. But as my son’s mother, I knew that there was zero possibility of him ingesting any of these high-fat foods.

I felt as though there was a ‘we did it and we know you can do it’ attitude when it came to avoiding a tube placement. Reading the responses of the proud parents, I immediately felt defeated. In my heart, I knew that avoiding a tube was nearly impossible.

When Christopher was nine months old – and the scale still wasn’t moving – we met with a gastroenterologist. She asked if we wanted to be admitted to the hospital that afternoon for a gastrostomy procedure, not even entertaining the idea of dipping our toes into the world of tube-feeding by placing a nasogastric tube.

This situation was getting dire and although I knew that this was the only way for Christopher to thrive, I still felt shame. I felt as though I didn’t try hard enough. I questioned myself and played every scenario out in my mind, over and over.

Maybe the milkshakes with heavy whipping cream would have worked? What if the peanut butter blended up with avocado was the solution? But I knew. I knew that placing the tube was our only answer and yet, it still felt like a failure.

I hate to admit that I was nervous to update the social media crew who confidently gave me advice on how to avoid a tube. They’d been so proud and certain that I, too, could avoid a tube placement for my child. I worried I’d be judged for not doing enough.

Honestly, though, if shed tears equaled effort, I tried hard enough. Tears as I shoved a syringe into my wailing child’s mouth. Tears as I pumped and prayed he would take more than four ounces that day. Tears because I knew oral eating was not in his best interest. Tears because I felt like I failed him.

This was all so long ago and brings up many emotions, especially because my views surrounding the feeding tube have drastically changed.

Christopher is now 10 years old. He has had a gastrostomy tube, a G-J tube, and now has a separate jejunostomy and gastrostomy. There is no shame, zero embarrassment and absolutely no disappointment. We are not failing over here, we are thriving.

There is nothing wrong with avoiding a feeding tube, but there is also nothing wrong with placing one. Avoiding a tube isn’t ‘winning’. Placing one isn’t ‘losing’. I’ve learned that placing a feeding tube meant meeting Christopher’s needs. A feeding tube is making sure he is fed, hydrated and given the necessary medications to stay as healthy as possible. A feeding tube is freedom from writing down every single calorie.

A feeding tube is growing. It’s loving him enough to know what’s right for him. It’s giving up my desires for him to eat cake and lick ice cream cones. It’s setting aside the norms of society and living our way, unapologetically.

A feeding tube is so many things and failure isn’t one of them. A feeding tube is living – and it’s life-changing.