This week is Feeding Tube Awareness Week — a time to shine a light on children who are nourished differently, and the parents who do whatever it takes to help their kids grow, heal, and survive.

I recently saw a post on Facebook, and it just resonated with me.

“Tube feeding isn’t a failure.

It isn’t giving up.

It’s medical care. It’s nutrition.

It’s love in its most practical form.

For some children it’s temporary.

For others it’s long term.

For all of them, it’s a tool that allows their bodies to get what they need.

This week, we bring awareness.

We normalize it.

And we honor the strength of children and families walking this road…often quietly and often misunderstood.”

Take a moment…read that again.

It isn’t something to hide or explain away.

Tube feeding is medical care.

It’s nutrition.

It’s love in its most practical form.

A feeding tube is a tool — a way to get their bodies what they need to grow and thrive.

Here at Hope Between the Hard, we aim to normalize this and give you a place to feel seen and heard.

What Are Feeding Tubes?

Before I share our story, I want to explain the most common types of feeding tubes.

Nasogastric Tube (NG Tube)

• An NG tube is a soft tube that goes through the nose and into the stomach. It’s usually used temporarily — often in infants or when short-term nutritional support is needed.

Gastrostomy Tube (G-Tube)

• A G-tube is placed surgically through the abdomen directly into the stomach. It’s typically used for longer-term nutritional support and is one of the most common tubes for children who need ongoing help with feeding.

Gastrojejunal Tube (GJ Tube)

• A GJ tube is similar to a G-tube, but it delivers nutrition into the small intestine instead of the stomach. It’s used when feeding into the stomach isn’t tolerated well.

Feeding tubes are not one-size-fits-all — but they are tools that help kids get nourished when oral intake isn’t enough or isn’t safe.

Rest assured, tube feeding does not limit a kid’s physical activity, play, or being able to thrive socially. I have not only lived this with our daughter, but also seen this time and time again in the kids I work with. Take a deep breath mama. You can do this.

Our Tubie Story

Our daughter’s feeding journey goes back all the way to the beginning of her life.

When she was born at 30 weeks gestation, weighing only 2 lbs 4 oz, she had a long ways to go before we could bring her home from the hospital. She spent 7 weeks total in the NICU, and for most of that stay she needed an NG tube to help her get nutrition until she came off of CPAP. At 1 month and 5 days old, she got to try her first bottle. Even then, she had to prove to the nurses that she could take milk orally for at least 24 hours before they even considered taking out the NG tube. She kept her NG tube until 3 days before we were able to take her home.

Fast forward….

Around 10–11 months old, we saw a big drop in her oral intake. Don’t get me wrong, she wasn’t drinking a ton normally, but she followed her own trendline and as a whole she was growing in a positive direction. Then we got COVID, and after that we got lucky if she had a day when she drank 8 hours, and all of that was only with mom or dad. She would go the entire day at daycare (and we both work full-time) not drinking a single ounce. Stressed doesn’t even begin to describe what we felt during those days….

Eventually she was diagnosed with failure to thrive, and if I’m being honest that was probably the hardest diagnosis for me to process. I felt like a failure as a mom. (Even though I knew deep down that wasn’t true.) But the reality was, that diagnosis hurt. We were trying everything we could think of, and our daughter was diagnosed with failure to thrive…. We got referrals to a gastroenterologist, dieticians, increased the frequency of our weight checks. It was a never ending string of appointments. Where we lived before, this was all through separate clinics too, so each time we had to give her whole story over and over again, and no one talked to each other. We were frustrated and felt defeated. Finally we got her into a Children’s feeding and growth multidisciplinary team clinic, and finally we were able to have specialists collaborating together to help us make a plan.

Over the next several months, we tried increasing the calories she was drinking — transitioning from fortified breastmilk to incorporating some Pediasure, and then moving fully to Pediasure. We also began feeding therapy to help her skills and stamina.

By 17 months old, after many hard conversations, we made the decision to place a G-tube. It was one of the scariest, most emotional decisions we’ve had to make as parents. (But in hindsight, this was the best decision we have probably ever made for her.)

What followed was an honest season of trial and error:

• She struggled with vomiting after every pump of 4 oz or more — cleaning up Pediasure from the carpet daily for weeks. I’m not even joking. It was so routine for us that my mom even asked if a handheld carpet shampooer for my birthday would be helpful.
• We trialed reflux medications to help her keep feeds down. Some worked, some didn’t. Over the years, some medications had to be changed due to insurance, which can be a frustrating reality for so many families when you’re forced to change something that worked just because of what insurance said it would cover.

Despite the challenges, today we are so grateful for where we have come.

Our daughter has now had her G-tube for 3.5 years, and she is still on reflux medication. This little girl has gone from being below the 1st percentile for weight, not even on the growth chart, to steadily moving up and thriving. She started life at 2 lb 4 oz, and now she’s pushing over 32 pounds. That progress brings me to tears all over again. And one of our biggest celebrations right now is that she has gone 8 months without using her G-tube, and her weight continues to be moving in the right direction.

Tube feeding wasn’t a failure. It was a bridge. One that helped her body catch up, get strong, and stay nourished. And for our family, that bridge was exactly what she needed.

A Gentle Reminder

So to the parents reading this — the ones awake at midnight, handing meds, reading feeding charts, advocating, comforting, hoping, dreaming, grieving….

You are doing an incredible job.

Read that again. You are doing an incredible job.

Your child is not defined by how they eat, but by how fiercely you love them.

This week, we bring awareness.

We normalize feeding tubes and we celebrate the families walking this path.

Thank you for being here. 💛

Blooming where we are planted,

A CP and Tubie Warrior’s Mama