Tube Feeding Stories & Milestones for Families | Project Inchstone

Kasey was born at 29 weeks with a rare abdominal wall birth defect called an Omphalocele. We spent a total of 173 days in the NICU and due to necessary respiratory support throughout the admission and oral aversion, Kasey’s been tube fed his entire life. Being able to use Compleat® Pediatric Organic Blends as the base to Kasey’s recipe made by our dietitian is something we are extremely grateful for. Having a product that is organic and has fruit and vegetable ingredients in it is super important to us. As we dabble through exploring food by mouth, we can be confident that at the end of the day Kasey is always getting the nutrition he needs.

Kasey, 8 years old

Baylee was born at 35 weeks with Down Syndrome and an Atrioventricular Septal Defect (AVSD). As a result, she didn’t have the stamina to take a bottle, so she was tube fed and began with a NG tube. We hoped that after her heart was repaired that she would gain stamina and begin oral feeding. However, due to frequent hospitalizations she had developed an oral aversion and continued to need a feeding tube. As Baylee got older, we needed something more calorie dense, so we switched to Compleat®. Eventually we made the decision to get a g-tube and slowly made progress with oral feeding and transitioned to a blended food diet as Baylee continued to slowly work on her oral feeding and drinking skills. At three and a half we officially removed the g-tube and have been tube free since. Baylee is now in first grade and thriving. Her journey was a roller coaster and at times I wasn’t sure if we would ever get here but slowly but surely we did. This year she’s eating lunch at school with her peers and was recently student of the month for her 1st grade classroom.

Baylee, Age 6

Celeste was born with a rare condition called Hyperinsulinism. Her body produces too much insulin causing her to get hypoglycemic. Celeste was tube fed from the day she was born and spent 107 days in the NICU because of her condition. She relies on tube feeds to keep her glucose levels stable to ensure she stays safe and healthy. We love that Compleat® formulas are available in a higher caloric content because it helps to better meet her nutritional needs. It also allows her to receive less volume and still have room in her belly to try new foods and explore oral feeding!

Celeste, 1 year old

Our sweet Luke is 6 years old, has Down syndrome, and has had a feeding tube his entire life.

This year has been full of “inch stones” for him—those small but mighty wins that mean everything. After switching to Compleat ® Organic Blends, he finally reached 30 lbs… something we’ve worked so hard for.

But it’s more than just the number. His communication has grown so much—he’s able to tell us what he wants, what he needs, and even where something hurts. And physically, he’s stronger and more confident—walking up and down stairs safely and even jumping with both feet (a BIG deal in our world ).

So proud of you, Lukey. You continue to amaze us every single day.

Luke, 6 years old

Wyatt had the incredible opportunity to play bocce at his high school this season – and what a season it was! As the only student with special needs on the team, Wyatt showed up with unwavering determination and heart. His teammates quickly learned how to support him during his turns, and one graduating senior later shared that playing alongside Wyatt was the highlight of their entire season. Everyone walked away with memories – and lessons – they’ll carry with them for a lifetime.

Wyatt
Wyatt’s family is a Compleat® partner

Max was born with congenital heart disease and had a heart transplant at a year old. Due to his heart condition he struggled to eat by mouth and he's had a feeding tube his entire life- and he's been on Compleat® for most of that time. He's been able to grow and thrive on his Compleat® Pediatric Organic Blends, and with as many health concerns as he has- I'm thankful what he's fed with isn't one of them! Although he's 100% tube fed, he does enjoy one thing....ice cream!! On our recent family cruise, he enjoyed many licks of ice cream cones- and it was so awesome to see!

Max, 7 years old

Miah has had feeding difficulties since birth & had an NG tube for 6 months then had a G-tube surgically placed. All of her nutrition has been via tube. She was diagnosed with pediatric feeding disorder after 2 years of being tube fed. She dealt with so much vomiting and her body rejected formula after formula until we switched to Compleat® almost 3 years ago! Since switching we have inched our way from refusing to touch foods, to accepting small tastes, to now getting 1-2 meals by mouth! It has been truly amazing to see her resilience and her growth with Compleat® on our side to offer us versatility & flexibility to use via tube or by mouth as we work to transition her to being less tube dependent!

Miah, 3 Years Old

Miah’s mom is a Compleat® Partner

Our baby boy, born at 25 weeks, was not able to improve with bottle drinking and his intake reduced dramatically. To keep growing and avoid the constant stress of a wiggly infant pulling the NG tube, our care team decided it was time for a g-tube. We have had tube feeds since and work every day to improve. Since starting daycare, he has inched forward with oral meals. At home we supplement with Compleat® tube feeds to help meet his nutritional needs to support growth. We just turned 2, and are nearing adjusted age 2 which means less of a need for milk, and just maybe thanks to Compleat®, our sweet boy’s tube journey is nearing an end as he eats and explores new foods every day.

Liam, 2 years old

Scarlett has recently
graduated from physical therapy! From a kid walk wheelchair, to a gait trainer, and physical therapy twice a week for over four years Scarlett has officially graduated and is walking and running on her own! She still wears her SMO ankle braces for support but she is now in ballet and playing tball! She doesn’t let her feeding tube slow her down one bit!

Scarlett, 5 years old

Scarlett’s mom is a Compleat® Partner

Lavender has
accomplished so many incredible goals in the last year! She recently learned how to push a ball in occupational therapy and we are so proud of her!

Lavender, 8 years old

Lavender's mom is a Compleat® Partner

Radical acceptance is how I inch forward on a day to day basis. Sometimes even moment to moment. 2025 was filled with a lot of internal struggle for me. I fought very hard to prove to myself and my care team that I could live without nutritional intervention. My nutritionist did me the kindness of letting me come to the conclusion that isn’t true on my own while keeping a close eye on me. She also made sure I had my Compleat safety net on hand at all times. Having the tools to succeed is important. Having someone on your team who listens to you and helps you when you stumble without judgement is invaluable.

Faith Z.

I’ve learned to take the wins as they come and with Mathias that means not expanding to new foods per se but expanding to differences in foods! Pizza has always been a favorite, but recently Mathias tried - and liked - Detroit Style Pizza, which is so different for him! We’ll take that win 🏆 🍕

Mathias, 9 years old

Mathias's mom is a Compleat® Partner

Sully has recently been growing so much! He’s
grown over 4 inches in height and is now in the 64th percentile for height and the 73rd percentile for weight, which has been really encouraging to see.

Sully, 3 years old

Sully's mom is a Compleat® Partner