My name is Harley. This is my daughter, Cecilia. We call her Cece. Cece was born in October 2023 at 28 weeks gestation. A week into her NICU stay, it was discovered she had Grade III & Grade IV brain bleeds. This is typical in premature babies, a bit less typical for 28 weeks and above but not uncommon. It wasn't long after the bleeds began to subside that she was diagnosed with post-hemorrhagic hydrocephalus. Her first MRI was devastating as were quite a few after that. The nurse practitioner cried with us, we had several meetings with the NICU team, but Cece never, ever showed any signs of decline. She eventually moved to the NICU step-down unit, took all her bottles by mouth, and finally came home after 64 days! She left without a shunt.

Two weeks after bringing her home, we brought her back to the hospital. She was lethargic with a bulging soft spot and rapid head growth. She needed a shunt. Badly. We went in on December 21st, she had two fontanelle taps, and we were in PICU for Christmas. Her shunt was placed on December 26th. We went home 3 days later. On her big sister's second birthday a month later, she had a bulging shunt, a clear malfunction. We went to the hospital and she went into the OR for surgery the next day. Less than a week after being home from that, she had a huge cerebrospinal fluid leak from her shunt site! Hospital, home, then ANOTHER leak! Hospital, wound revision surgery, home! Where she has been ever since. We were in the hospital for Halloween, Thanksgiving, Christmas, and Valentine's Day, but have managed to stay home for the following holidays. Cecilia is 11 months old now and doing SO GREAT! She is delayed, with little to no function of her right eye. She has craniosynotosis, but as of now no surgery required.

Despite it all, Cece is THE HAPPIEST AND SWEETEST GIRL EVER! She is in physical and occupational therapy and learning more and more each day. She makes everyone grin big like she does and is very fiesty. She is the most amazing and resilient girl in the world and we are so very, very proud of her. Here's to the future with our sweet Cece!