Lilly Ann

Child's Birth Year
2016

State/Province/Territory
Delaware

NICU Hospital for my journey
Children’s Hospital of Philadelphia

My NICU Graduate's Journey
Lilly was born in the SDU at CHOP in 2016. She was born with a right sided congenital diaphragmatic hernia, just 11 short months after her big sister was also born at CHOP for CDH and passed away. We spent years between our 2 girls at CHOP. Lilly was on a ventilator, oscillator, ECMO, bi-pap, nitrous oxide while on high flow oxygen, then regular oxygen and finally room air! She has had several different feeding tubes but had an NG while in the NICU that they taught us how to replace. At one point Lilly was the sickest baby in the entire NICU. The support of our team was amazing, there were some nurses that took care of me as much as our daughter. Lilly underwent major surgery at a month old and I finally held her at a month and a half old for the very first time…ever. My nicu days with Lilly are nearly 10 years in the rear at this point but will never forget it. Never forget the kindness of some and the true colors of others.

What makes you proud of your NICU graduate?
She has defied all the odds. If you look at our girl you would have no idea how sick she was and what the doctors thought she would be like at this age. She fights for what she knows is right and can advocate for herself when something isn’t. She has a heart of gold and loves to serve others

Weight at Birth (lbs. or Grams)
5lbs

Weeks Gestation
37 weeks

Time spent in the NICU (Specify Number of Days, Months, or Years)
4 months NICU, 1 year hospital