NICU Parent Perspective: We Have Hope in Whatever Lies Ahead

Before my twin sons were born at 23 weeks, I’d never heard of the NICU. But it was a place I would soon come to know well during our 296-day stay.

by Valerie Rodriguez, mom to Cristiano and Cruz

Photo courtesy of the Rodriguez family

My entire pregnancy had been a surprise, but nothing prepared us for the surprise of being told we were having twins, or for the stress of experiencing complications at 22 weeks, or the pain of losing our precious baby A, Cristiano, just 22 minutes after his birth.

At 23 weeks, we were told both boys looked healthy. But 30 minutes later, my cord prolapsed, sending me to an emergency C-section. Our sweet Cristiano weighed just 14 ounces and passed away shortly thereafter. His twin brother, Cruz, weighed 1 pound, 6 ounces, and was immediately transferred to Baylor University Medical Center Dallas. We barely got to see his tiny body as he was whisked away, intubated and hooked up to machines in a huge isolette. 

During his 296-day NICU stay, Cruz endured a grade II brain bleed that developed to a grade IV bleed. His lungs were weak and immature.

I was so scared to enter the NICU. There were many faces there, but the one I remember most was Suzy, the Hand to Hold Family Support Specialist. I realized I needed someone to talk to about Cruz, someone who understood. I connected with Suzy, and she listened to everything I had to say. I’m so glad I made that decision. 

Photo courtesy of the Rodriguez family

Home now, Cruz requires 24/7 nursing care. He still has a ventriculoperitoneal (VP) shunt, a tracheostomy, and gastrostomy tube. Yet he is the happiest kid. He has thrived so much at home, no longer needing a ventilator and working towards no longer needing the trach.

Because of our NICU experience, we were already familiar with quarantine and practicing healthy daily living. Any set back for Cruz could be severe. As COVID-19 spread across the country, we did what we knew, taking every precaution: washing hands, checking temperatures, and being cautious and aware of how we feel. The home health nurses who come fill out a daily checklist, and we also check their temperatures upon arrival. We lived the fear of losing Cruz multiple times in his short life. So we take any preventative measure we can do as a family. Our faith has taught us to not have fear; NICU life taught us the importance of trusting that faith.

There are a lot of families that will go through a similar traumatic experience. There are a lot of families that will experience the devastating loss of a child. And some families will have a powerful testimony with minimal disruption. There is no standard outcome. But the Family Support Specialists and other parents in the Hand to Hold community are there for every NICU family whose hearts are hurting like mine was. Because their child has been in that same position. It’s an exclusive group that no one wants to be a member of, but Hand to Hold has fostered a community that supports one another. 

Photo courtesy of the Rodriguez family

Being a NICU mom hasn’t been easy. Hand to Hold supported me through my NICU journey and through the loss of my son, Cristiano, with in-person support groups, virtual support groups now that Cruz is home, and their podcasts. We still take it day by day. NICU life taught me to appreciate the little miracles of each day.

With Hand to Hold, we were shown empathy, not sympathy. Through each milestone in the NICU, Hand to Hold was there to bring a sense of joy. Through all the ups and downs of the NICU, life in quarantine, and whatever lies ahead for our family, Hand to Hold gives us hope in our journey.

Photo courtesy of the Rodriguez family

Support is just a click away. Find virtual support groups, private Facebook communities, podcasts and peer support for NICU families today.

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