Hazel

“One thing we want to tell other families is to not let the tube stop you.”

Hazel is almost 3 months old and is our only child. She enjoys her nightly golf cart rides around town, going to the farmers market, swinging on our porch swing, and taking walks.

Hazel’s journey started around 24 hours old when we hadn’t been able to get her to eat. She then began having breath holding spells. Those things together got her a trip to Riley Children Hospital. Once there, we met with the genetics team who were able to run tests to try and figure out what was going on. At 6 days old Hazel was diagnosed with Cri-du-chat, or 5P minus.

Her diagnosis comes with the possibility of many different physical and developmental disabilities. We attempted bottle feedings, but they just weren’t going great. We knew that eating might never be an easy thing for her, so we made the tough decision to go ahead with a gtube. The first couple of days were rough. Having a newborn is hard enough but one with health complications is even harder. Knowing that our baby would be getting a gtube added so much stress, but we knew it would all be ok. We knew things would be amazing, just a little different.

We have learned so much over our first 3 months as parents to a Tubie. One thing we want to tell other families is to not let the tube stop you. We love being on the go, and that hasn’t changed just because of her tube. Having the Freearm gave us even more freedom to do what we love. Before free arm we did gravity feeds with me or my husband holding the syringe. Imagine how hard that was walking around the farmer's market! Now we can go anywhere and not have to worry. The FreeArm has given our little girl the chance to go do so many things!