October is Pregnancy & Infant Loss Awareness month. Unfortunately, many of our heart families walk this impossible road. Help-A-Heart wanted to share the story of one of our heart angel families this month to help raise awareness. Thank you to Nate & Emily Forsythe for writing & sharing the story of their precious daughter, Kennedy Ren Forsythe. Nate & Emily are the proud parents of Kennedy & Oliver (age 1). This is Part 3 of 11.
We chose The University of Iowa for Kennedy’s care. We met the care team, interviewed the surgeon, and toured the Pediatric Cardiac Intensive Care Unit (PICU) and felt comfortable with our decision. (Or as comfortable as first-time parents who have to turn over their newborn child for open-heart surgery can be.)
Hospital life is terrible. The staff is wonderful, they do everything they can to make you feel comfortable. But someone always needs to talk to you. And you’re never alone with your child. And everything smells like bleach and pessimism. And everyone is clinging to hope.
Hospital life is terrible.
Kennedy was born via c-section. I saw her for a brief moment, they moved her to my side of the curtain and allowed me to kiss her cheek before whisking her away to the NICU to stabilize her. She was cyanotic – she was very purple when she was born. Nate got to go to the NICU with her for a short amount of time. I wasn’t allowed to see her for eight hours.
She was in a tiny bed with lines everywhere and a breathing tube – the medicine they give heart babies to keep them stable sometimes impacts their breathing. I held her hand and stroked her head. She was sleeping.
It would be three days before I was allowed to hold her. And only after I broke down and began sobbing did they let me hold her. I got to hold her only a few more times while she was still alive. All before her first surgery at six days old. And I had to ask permission each time.
Her entire life was lived connected to machines and leads and monitors and observed by no fewer than three people at any given time. We were never alone with her.
We survived on coffee and protein bars and hospital sandwiches and hope. Our many visitors had to answer a questionnaire each time they came. Our hands were raw from washing them. We had daily meetings with doctors and visits with the Palliative Care Team. Sleeping on hard couches. Meeting other families clinging to hope. Streaming Netflix, but not really watching it. Planning Kennedy’s future because that’s how we make it to the next day. And holding her finger and stroking her face because that’s all were allowed to do.
I’m grateful for the hospital staff and wouldn’t change our decision to choose Iowa.
But hospital life is terrible.