At the point where we knew that Evie couldn't leave the NICU unless she gained more weight, but that she wasn't doing that anytime soon, we said yes to the G-tube. A Gastostromy tube is a feeding tube inserted into the stomach (with a surgical procedure). Evie said bye-bye to her NG tube in her nose and said hello to her G-tube in her stomach. It broke my heart to say goodbye to her when she went into surgery. But she was in good hands at Boston Children's. Erick and I learned how to insert an extension tube into the G-tube port and feed her formula and medications through this tube. Evie gained enough weight to leave the NICU exactly 6 weeks after she was born. Freedom!! When she first came home, we had to feed her by mouth for 20 minutes and then by g-tube for the rest every 3 hours. The whole process took about 90 minutes. So by the time we finished, we had about a half an hour of rest before setting up for the next feeding. It was TORTURE. Then we realized t
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!).