Hi friends, Evie is 6 years old and has had a feeding tube all her life. Yesterday was the first day ever that she had no formula put through her g-tube. At 5 weeks old, we broke out of the NICU (finally!) after getting a g-tube placed in her stomach so that she could gain weight at home. We started from using an overnight feeding pump and feeds every 3 hours on Pediasure formula, and praying she wouldn't spit up or set off her pump alarm overnight. We then figured out how to space out the feeds to transition from a NICU schedule to a real-life schedule. We then dealt with feeding aversion, with Evie turning away or crying when offered the bottle. As she got older, she accepted a little food by mouth, but not enough to sustain her. I furiously searched Facebook groups and read articles, trying to figure out how to help her leave the tubie life. We switched from Pediasure to Real Food Blends to let her body get used to less milkshakes and more real food. This was a huge s
While sharing our journey with Down Syndrome, we want to help other parents with our experiences, as well as spread awareness about what it means to have Down Syndrome (spoiler: it means great things!).