Last night, for the first time since she was born, Evie didn't get a formula feed overnight, and she didn't even get water overnight (for hydration). She slept like a typical child in her crib, with no hookups. I didn't have to hook up the 24" right-angle Y-port extension tube into her tummy and through a hole in her Zipadee Zip to the G-tube pump. My husband didn't have to prep the 500 ml feeding bag and wait until she was asleep to hook up the feeding tube. He didn't have to wake up at 5 am to turn off the g-tube pump when the alarm said the feed was done. We didn't have to wake up because the flow was interrupted by her tossing and turning and the alarm didn't have to go off. SHE didn't have to wake up soaking wet because there was a leak, or because the tube somehow became disconnected overnight. With that, I want to post a tribute to the IV pole. It has faithfully stayed by her bed, standing guard and holding her food for 2 and a
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!).