A Story from the NICU on World Prematurity Awareness Day

by Anna David – Founder, NICU Families Northwest

Photo courtesy of Anna David

Today is World Prematurity Day. According to the World Health Organization, 15 million babies are born preterm every year. Here in Portland, NICU Families Northwest is working hard to support families whose children are in the NICU, through peer support, resources, and love. We are proud to partner with NFNW to offer discounted postpartum support for NICU families, and today, we are honored to feature a story from a NICU Mama.

By Anna David– Founder, NICU Families Northwest

This is Miranda. She was born at 26 weeks and 4 days at Randall Children's Hospital in January of 2013. She was born early because of Preeclampsia and HELLP syndrome and weighed 1 lb. 2 ozs. at birth due to Intrauterine Growth Restriction (IUGR).

We discovered Miranda wasn't growing on schedule at our 20 week ultrasound, but I wasn't exhibiting any of the typical symptoms for Preeclampsia. We tried to remain optimistic and confident that she would be born healthy and at full-term, but each week without answers made it challenging to not become more and more anxious. At just past 26 weeks I was admitted to the Labor & Delivery unit after a concerning non-stress test. In three days my condition worsened, while the cause remained a moving target, culminating in an emergency c-section on the final day.

There were many challenging things about being in the NICU, but I think one of the hardest was trying to manage other people's expectations and understanding of Miranda's hospitalization. Because she had a relatively uncomplicated stay, many friends and family focused on the fact that we were lucky she survived. They would say she was a miracle. I think they expected me to be overflowing with emotion— gratitude, and relief. What I think was hard for them to understand was that I didn't want to think about her ever having been close to death.

For a long time after she was born, I couldn't manifest a lot of emotions that were visible on the surface, especially not happiness. If I allowed myself to get too happy it would easily cross over into a great and deep sadness that was hard to control. I feel like my emotional wires were crossed for a long time after the NICU, and moments of gratefulness or relief would bleed into a profound sadness for what Miranda had to endure, and our fears and anxieties during her 80 day stay.

I started a support group for families at our hospital before we were discharged, and would walk the halls posting notices on each door, hoping to make connections with other parents. Connecting with peers normalized our experience and created a community of people that understood all the acronyms, accepted our fears and concerns, and validated our feelings. If it weren't for those first families who accepted me and helped support me, I might still struggle with crossed-wires, but time and community have helped me heal. The impact of being in the NICU is significant and often life-changing in many ways. NICU families are unlike any other families I know, and I would have chosen to be one— but I am truly proud to be one.

We've been home over four and half years, and I remain inspired by our NICU experience and the way Miranda overcame her challenges. In 2015 I founded NICU Families Northwest to expand the network of peer-to-peer support for local NICU parents. The strength and determination that our children are born with, and the courage and love their parents give them from day one motivates me to do all I can to help NICU families heal and thrive

Anna David is the Founder of NICU Families Northwest and the proud mama of two gorgeous kids.