We recently shared a blog post about caring for a gastrostomy tube (also called a G-tube) or other feeding tube infants. We’ve heard from many parents in our community about how to raise and handle G-tube babies, offering insights, guidance, and support for families and caregivers.
We talked to two G-tube baby moms - Elouise’s mom Scarlett Alex and Bella’s mom Shadow-Beth Gairhan - about their experiences and what it’s like raising a G-tube baby.
About Elouise
Tell us about your child.
Elouise arrived a few weeks early and was born on May 1, 2021. The first few weeks of her life were typical, and we enjoyed the newborn bliss.
When did you first notice any changes in your child?
At around three weeks old, she almost completely stopped eating, and when she did eat, it was maybe an ounce, and she’d scream the entire time and for hours after.
After multiple doctor's appointments and an emergency room visit, we met with a gastrointestinal doctor, where Elouise was admitted into the hospital, and a nasogastric tube (NG tube) was inserted when she was six weeks old. She later had a G-tube placed at six months old.
At four months old, she was diagnosed with gastroparesis, a disorder that slows or stops the movement of food from the stomach to the small intestine. She also has dysphagia (inability to swallow safely) and a pediatric feeding disorder. She does eat some by mouth but receives most of her nutrition from the G-tube.
What are the biggest challenges you face having a child with a G-tube?
My biggest challenge has been accepting “losing” and grieving what I had hoped and dreamed of with having a newborn and toddler. Being unable to feed her, the doctor’s appointments, and fierce advocacy was a lot to get used to. I still have a hard time with it sometimes. It took me a long time to understand that you can grieve something that never got to happen.
As a family, it’s challenging to figure out how to go out in public, how to feed her, what equipment to bring, and deal with stares and comments from others. But we got it figured out and have a really good rhythm.
How do you dress Elouise day-to-day? What diapers, clothing, and pajamas are easiest and most comfortable to wear with a G-tube?
Now that she’s a fiercely independent 2-year-old, she’s very into picking out her clothes, and dresses are her go-to. They aren’t the most G-tube-friendly since her line lifts up the dress, but some dresses have G-tube-friendly pockets that make that easier. My go-to is shorts and leggings with a T-shirt.
Little Sleepies are our favorite pajamas. We found them when Elouise was tiny, and I’ve never looked back! Not only does it help her eczema, but the double zippers make for easy access any time – day or night!
What advice would you give to other parents and caregivers that have a child with a G-tube? Are there any resources or products that have impacted your journey?
It’s incredibly overwhelming at first and feels so lonely. You’ll find your groove, even if it feels like you’ll never get there. The “Flying Squirrel” feeding pump holder was our savior in the beginning, and now that she’s mobile, a G-tube backpack is the best!
For support, I joined several Facebook groups for “tubies” and “tubie caregivers.” I also follow Instagram pages of moms with “tubies” and feeding disorder pages. It helped me feel less alone in the beginning.
What’s your favorite thing about Elouise’s personality?
That’s a hard one – she’s seriously the best. Her personality is HUGE. If I had to pick one thing, it would be her goofiness. She is so effortlessly funny and loves to make other people smile.
About Bella
Tell us about your child.
Bella was born on March 13, 2021, via Cesarean section (c-section). She spent a week in the neonatal intensive care unit (NICU) and came home on March 20, 2021. While in the NICU, she needed some help eating, so she was given an NG tube but could go home without the tube on oral feeds.
When did you first notice any changes in your child?
Seven weeks later, she refused to eat, did not gain weight, and was labeled failure to thrive. Our whole world turned upside down. She was admitted to the Pediatric ICU, where we spent 31 days trying to figure out why she wasn’t growing, and she eventually ended up getting a G-tube placed on June 1, 2021. The experience was scary. I am a nurse and have worked with tons of G-tube babies, but there is nothing like watching your child being wheeled to the operating room for placement and not being able to hold her for 48 hours afterward.
What are the biggest challenges you face having a child with a G-tube?
One of our biggest challenges is keeping Bella’s G-tube in place. She is now an active 2-year-old and understands that she cannot play with or touch it, but other kids do not have the same understanding.
How do you dress Bella day-to-day? What diapers, clothing, and pajamas are easiest and most comfortable to wear with a G-tube?
We dress Bella daily in clothes covering her belly - she loves the Little Sleepies Twirl Dresses and Zippies for school. If she’s at home, she has more clothing options because we keep an eye on her.
We only wear Little Sleepies Zippies at bedtime. It is easy to run her tubing down the pant leg, out the bottom zipper on her left leg, and up to her feeding machine. Bella’s favorite print is Taco Time and Disney’s Moana of Motunui. She will wear one of these prints every night if we let her! My personal favorite is To the Moon and Back.
What advice would you give to other parents and caregivers that have a child with a G-tube? Are there any resources or products that have impacted your journey?
My best advice is to make your child feel that having a G-tube is a normal part of them and teach them also to teach others about their button. Bella loves her button and loves to tell everyone she meets about it.
The most helpful resource for us was finding an online support group where we could talk to other parents and guardians who were going through the same things.
What’s your favorite thing about Bella’s personality?
Bella has a huge personality, and my favorite thing about her is how sassy she is. She will tell you she is “Princess Bella” and that she is the boss. She is outgoing and loves her friends and family, especially her new baby brother.
We love to talk to our Little Sleepies community and learn about how families use our clothes to help their children face these challenges. How has Little Sleepies made it easier to care for your kids? Tell us below in the comments or join the Little Sleepies VIPs Facebook group. We’d love to hear from you and your family.
