Jennifer

Jennifer’s daughter Grace was born in 2011 with what doctors already knew was a severe congenital diaphragmatic hernia (CDH). Grace had surgery at 24 hours old and went onto a heart-lung bypass machine called ECMO at 36 hours old. Despite some serious complications in the NICU, Grace surprised everyone and was able to go home after just 72 days.

Before Grace came home to meet her big sister, Jennifer and her husband needed to be trained on how to use and take care of Grace’s NG tube and pump (eventually a g-tube), oxygen tank, oximeter and the medications Grace needed around the clock. They were approved for a few hours of private duty nursing and eventually found nurses to fill a few hours each work day as Jennifer and her husband worked staggered shifts outside the home.

Grace eventually passed away at almost 17 months after complications during a surgery but her family is so proud of how far she came and is grateful for all she taught them including how to be the parents of a child with medical complexity.