Our Journey with Tube-Feeding: The Good, the Bad, and the Ugly

This is day 9 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. I’m excited today to have Sara guest posting today about her son who has autism and is still being fed with a feeding tube.

I’ve been a Mama of a tubie (that’s short for “child with feeding tube”) for almost as long as I have been a Mom. My sweet little boy has been fed through his feeding tube since 5 months old, and we just celebrated his 4^th birthday! He has other special needs that go along with the reason for needing a feeding tube. Feeding tubes are not uncommon, but tube-feeding is one of those things that still seems odd, rare, and maybe even scary to the majority of people out there. There are a myriad of reasons for which a child (or even an adult!) might need to have a feeding tube.

Over the last several years, I have learned so much about what it is like to care for a child who has a feeding tube. It really is a huge part of our life; however, we have strived to give our son as normal of a life as possible, even though not everything looks or feels “normal.” Normal is over-rated anyhow.

Feeding a child through a feeding tube requires a lot of time, dedication, patience, trial and error, and plain old mothering instinct. There are good sides (yes, good!) to tube-feeding and bad sides to it as well. And sometimes, things can get ugly. As I’ve navigated through this journey and have become an advocate for my son through awareness of tube-feeding, I have been able to think of all of the good, bad, and ugly things. Here are some of the top ones I’d like to share!

The Good!

1) Tube-feeding can be the best source of nutrition for a special needs child.

I remember the day in the hospital that we sat down with the team of doctors, after my son had gone nearly 2 ½ weeks without eating orally as an infant. I was heartbroken. We knew there was something wrong, but we still had not pinpointed what it was, other than a diagnosis of severe reflux and choking/blue spells. We had to make one of the hardest decisions of our lives; our son needed surgery to insert a G-tube so that he could get the nutrition he needed. At the time, I was angry, but looking back, it was the right decision. We really had no other choice. The feeding tube allowed us to make sure he was getting the exact amount of nutrition his little, growing body needed. This is the case for hundreds of others out there like us!

2) Tube-feeding often provides relief for worn-out parents.

Most tubie Mamas have a love/hate relationship with their child’s feeding tube. We realize how necessary it is at times, but other times we wish like crazy that our child didn’t have to have it. Like Kathryn at Singing through the Rain says in her post “What it’s Like to be a Mom to a Tubie,” “Having a child with a feeding tube is hard to see as a parent, because you want your child to have their best chance at everything, especially when it comes to eating.” But, when your child has a medical condition that makes it impossible to eat, or has an extreme aversion to eating, a tubie Mama (and Dad!) might actually feel relieved to be able to feed their child.

3) There are many options for what you can feed your child.

This one is based on opinion and preference, but one thing I didn’t learn until much later in the game was that I had a lot more options for what I wanted to feed my child. Up until he was 3 yrs old, we had been giving him prescription, hypoallergenic formula. After researching the ingredients in the formula and also not being able to control my son’s constant retching and vomiting, we decided to go to a dietician and come up with a plan for a blenderized, real food diet. I now make all of my son’s formula using actual food with a professional blender (which we got inexpensively due to a medical discount). The food is blended and pureed, and it easily goes through his tube. He is so much healthier, happier, and no longer vomits or retches all the time. It was probably the best decision I have made in our journey.

The Bad!

1) Your child does not eat like a normal child.

This is definitely the worst part of having a child with a feeding tube. Birthday parties, holidays, and any celebration that revolves around food can make a tubie Mama feel sad. If the child is older, it can make them feel isolated. You want so desperately for your little person to just take more than a bite of that delicious dinner you cooked. You want them to enjoy the taste of your favorite chocolate chip cookies. You pray for the day that your child will no longer need his feeding tube.

2) Tube-feeding and feeding tube care takes a whole lot of work.

There is a lot more that goes into feeding a child through a feeding tube than one might think. You have to sanitize everything, constantly keep the child’s port (where the tube goes in) clean, wash out the tubes, hook up the tubes, change out Mic*Key buttons, feed every few hours (or manage continuous feeds), keep your child from getting tangled in the tubing at night, figure out why the tube is clogged, pray you sleep through the night without the alarm on the pump going off, clean up messes and spills, go to doctors’ appointments, treat any tube infections, and (if you’re like me) shop for all of the food, make all of the food, and feed the food to your child. For a parent or Mama who is new to tube-feeding, it can seem absolutely overwhelming. Some days I still feel overwhelmed.

The Ugly!

1) There is a lot of negative attention that comes with tube-feeding.

Our family has encountered negative attention from many people because of our son’s feeding tube. Some people have been ignorant, rude, and insensitive. Other people have been in denial. Some have tried to shove food in my son’s face in an attempt to get him to eat. Still others have been uncomfortable, have stared while in public or have treated Stephen as though he is an alien from another planet. Usually it is the adults who have an issue with tube-feeding because they cannot understand a path they have never walked. This used to make me very upset, but now that Stephen is older, I find that if I act comfortable and try to educate people, they are much more understanding and comfortable themselves.

2) Tube-feeding is messy and not always pretty.

I have pictures from the first time that the food I made for Stephen got clogged up in his feeding tube and, while pushing down the syringe, it sprayed all over the walls, the ceiling, me, and my son. It looked like the green slime from Ghostbusters had exploded in our living room. Thankfully, I was able to laugh after cleaning the food (and us) up. There have been times where the tube came unhooked from the port during the middle of the night, and my son, his bed, and everything was soaked in formula. There have been times when the balloon holding the Mic*key button in place popped inside my son’s stomach. Another time the whole Mic*key button came out of my son’s stomach, and we had to rush to the E.R. to keep the stoma (hole in his stomach) from closing up. Thankfully we learned how to put the button back in on our own.

My son is finally getting ready to go through an intensive inpatient feeding program and hopefully begin a new journey of weaning off of his feeding tube. I am more than ready to begin this new part of our lives! Although being a tubie Mama is not something I thought I would never experience, I am amazed and thankful for the knowledge, strength, and faith I have gained!

Related post: Dear Mom of a New Tubie

Sara is a stay-at-home Mom living in the south with the love of her life and beautiful son who has special needs. After completing her Masters in Christian Education and teaching, she is now an aspiring author, occasional freelance writer, tutor, coordinator for a foreign exchange student program, and dreamer of one day being a long-term missionary. She loves reading, cooking, learning how to live healthier, and talking about her faith.