My experience as a NICU parent during the COVID-19 pandemic

By Amy Rogeness, mom to Cora and Ellie

My daughters, Cora and Ellie, were born in May 2020 at just 24 weeks and 3 days gestation. They spent several months in CHOC’s Small Baby Unit, a special unit within the neonatal intensive care unit (NICU) that cares for the smallest and sickest babies. You can read more about our SBU journey – and see how well the girls are doing now – here.

Having a child – or in my case, two children – in the NICU is hard, and something that’s difficult to explain to someone who hasn’t experienced it. Becoming first-time parents is hard; becoming parents to twins is hard; having your children in the NICU for 136 days is hard; doing all of that during a global pandemic is that much harder and came with added complexities.

Feeling safe during a pandemic

Despite the pandemic, we felt safe at CHOC. Our daughters were in the SBU, located on CHOC’s Orange campus, and we visited them every single day. Due to COVID-19, my husband and I were screened every morning before we could check in at the front desk to get a visitor’s badge.

Soon enough after going every day, the screening and front desk teams began to recognize us and would ask how our girls were doing. These small gestures of recognition and concern for our daughters made us feel so welcome and somehow managed to put a smile on our faces, even during the hardest times. The screeners and front desk representatives were invested in the girls’ fight and when we were discharged, they were so excited to hear that we were going home!

Our heroes

The entire team who cared for our daughters are our heroes. Every day the doctors, nurses, respiratory therapists and developmental therapists came to work despite the pandemic. Even during a major health crisis that affected them professionally and personally, they cared so deeply for our girls. Although a scary situation outside of the hospital, when we were in the hospital, it felt like a small oasis away from the uncertainty of the pandemic because the CHOC care team gave the same level of care and concern to our girls that they would have provided during non-pandemic circumstances. Our girls wouldn’t be here without the work of a great medical team at CHOC.

Video: Amy and Brian holding Cora and Ellie in CHOC’s Small Baby Unit

The care team supported Mom and Dad, too

Being in the NICU during a pandemic dramatically changed our experience due to the safety protocols in place to protect the patients and employees. Normally CHOC’s NICU and SBU offers opportunities for parents to meet one another and get together for emotional support. Under normal circumstances, other visitors are allowed, which can help parents emotionally. My husband and I were lucky to have the ability to visit the girls at the same time, due to having twins, but our friends and family were not allowed to visit the girls. We completely understood the importance of a limited visitor policy to reduce the number of people in CHOC buildings during the pandemic, but that meant we relied that much more on the healthcare team for emotional support. The nurses and therapists became our friends and allies during our girls’ fight in the NICU. They celebrated with us, they were our shoulders to cry on, and they were the ones encouraging us to keep going. Not only did they provide excellent care to the girls, but they provided emotional care to my husband and I as parents – even during a pandemic, when they were also experiencing uncertainty in their own lives. This professionalism and personalized care made our experience bearable, daresay even enjoyable at times, because we could connect with them and laugh with them – important interpersonal connections that made us feel like we would get through to the other side.

Thanks to CHOC’s doctors, nurses and therapists, my daughters are doing well, and our family made it through this experience, and I’d like to express my appreciation for all they did for us, especially during a pandemic.

Seeing CHOC from a new perspective

I am in absolute awe of CHOC and its employees. I have always loved and admired CHOC; I grew up connected to CHOC and knew of the amazing work being done throughout the health system. But I was connected through being a doctor’s daughter and a member of the Orange County community; now I am a CHOC parent.

For the first time, I experienced the world-class care CHOC is known for, and the concern and dedication that everyone at CHOC shows to patients and their families. I cannot emphasize enough the highest level of concern for the patient, and the family-centered care delivered at CHOC.

I know that our story is just one example among thousands of others – stories of how much CHOC has done for patients and their families, not only to help heal a patient’s body, but also help them heal emotionally, as well.

Thank you, CHOC, for taking such good care of my daughters – and my husband and me – during our NICU experience throughout the pandemic.

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