Holly’s Tubie Testimonial

Welcome back to #TubieTalk: Tubie Testimony! We are excited to continue to dedicate this platform to sharing Tubie stories in hopes of creating an advocacy for those who are a part of the Tubie community by sharing first-hand advice, and Tubie fun facts! For the month of January, we are highlighting Holly’s story..

Join us below to read Holly’s Tubie Testimony told from her mother, Lisa, and learn all about what this Tubie is made of!

My daughter has always been a tiny girl but we started to get concerned when she was falling behind on some of the major milestones. At 16 months old, she is barely 17 lbs.

She never seemed to like eating or drinking much by mouth and, after doing a swallow study, we realized that she had trouble swallowing liquids and she also couldn't transport food inside her mouth effectively. No matter how much food we gave her, she just wasn't gaining weight and she could never eat much at a time.

Our GI wanted to hold off on the G-tube a little while longer but he realized that she also wasn't drinking nearly enough to stay adequately hydrated. So, this became an urgent issue, and the decision to place her g-tube was made.

She got her g-tube on August 22nd, 2022 and it has been a rollercoaster ever since. After her surgery and that hospital stay, she was ok until we got home and she started not tolerating most of her feeds. She started retching after 70% of them and she's now on medication to ease her tummy. Even with the medication, though, she still has her fits of intolerance every once in a while. We're still trying to figure out the magic combination of formula and feed frequency/duration but, I'm hopeful that we'll find it soon.

Just today, we changed her feeding schedule again, per the GI doctor, to 4 bolus feeds during the day and a huge but slow continuous feed at night. I think this will be better for her but, my husband and I are honestly scared to be excited anymore.

It's been a real struggle, my husband and I are at the end of our ropes but Holly has been an absolute champ through it all. She is the happiest baby on the planet, somehow, and I want to be her when I grow up.

Share your favorite memory with your Tubie:

I have a lot of favorite memories with Holly; I can't really pick one. I'm just completely in love with her spirit. She's been an impossibly happy baby since she came out of me and I didn't even know it was possible to smile that much.

Share a challenge you or your Tubie have faced with tube feeding:

Our biggest challenge is that Holly's tummy can't seem to handle much formula at one time.

What is your Tubie's favorite activity?

Holly is obsessed with bath time.

What is your Tubie's favorite color?

Holly doesn't have a favorite color yet but, the more colorful, the better.

What pieces of advice would you give to other parent's/ caregiver's of a Tubie?

Be kind to yourself. If you're like me, you'll be stuck in denial for a while and it's going to feel overwhelming when the glass in your brain finally shatters. Let yourself feel whatever it is that you feel in the moment and just sit with those feelings for as long as you need to.

Lisa has made 2 youtube videos to help other tubie families new to the game like me and would love to share with the TubieTalk community.

"Help! The G-Tube Came Out!" https://youtu.be/6kSy4KONfAM

"G-Tube Feeding How-To" https://youtu.be/5pW7YmB518U