Real Baby Donnie

In May 2020, two months into a global pandemic, we transferred our son from the safe comforts of our local hospital’s Neonatal Intensive Care Unit (NICU) to the Children’s Hospital of Philadelphia. To a NICU, well, technically a NIICU (the extra I stands for infant, as one of our doctors told me), where specialists in Chronic Lung Disease (CLD) could work their magic on our 29-weeker.

He’d spent five months already in the hospital, and his doctors recommended a transfer to a facility that focused on CLD and cared for older preemies like him.  CHOP is one of the best children’s hospitals in the country and their CLD program has treated hundreds of babies with this condition.

Just having a child in the NICU is an overwhelming experience. Having a child transfer from one NICU to another during a pandemic and after months with no discharge date in sight is something else entirely.

We moved to a city 2 hours from our home, from our family, to a place with rapidly spreading Covid-19—they’d hit community spread at that time. To a new team of nurses, doctors and specialists. To a hospital that would become our son’s new home – CHOP, as its patients and their families know it.  

I cried leaving CHOP that first night after our transfer, when we had to go check into our hotel. I questioned our decision to move him, tears rolling down my face as I asked if we’d made a mistake.

It’s a shock going from a sterile NICU, where the only babies allowed are ones who have never left a hospital, where you can’t even bring a coat to your child’s room for risk of what it might carry on it, and moving to a more traditional children’s hospital.

But when we left CHOP almost five months later, I couldn’t have imagined us anywhere else. It was the best decision we could have made for our son’s health and his life. His quad room – where four babies lived like roommates – ensured he always had an attentive eye on him and someone to hold him.

He held court in his high chair in NIICU East, watching nurses go by, sitting in on rounds, exercising (or refusing to exercise) with his amazing OT and PT. He developed as normally as possible while living in a NIICU on 24/7 respiratory support, and that’s a credit to the many, many team members at CHOP.

That’s why we couldn’t pass up this opportunity to support the hospital that gave us and our son – the Big Don, as one of his pulmonologists called him - so much.

In total, Donnie spent 308 days in two NICUs – that’s more than 10 months, months longer than he spent in utero.

He was intubated, extubated, put on sipap, cpap, nippv, high-flow, low-flow and back again.

He had heart surgery – technically a cardiac catheterization – before he should have even been born.

He has had more chest X-rays and echos than I can count and received multiple blood transfusions.

He underwent surgery for a gastronomy tube (g-tube) and a nissen.

He was this.close to getting a trach.

He’s one in a million as one of our favorite CHOP docs told us.

Through the ups and downs, the good days and the not-so-good days, the team at CHOP was there for us.

Join us in giving back to them.