TRENDS Diary: Providing Support for Families with Babies in the NICU

Mom and baby, clients of Boulder County-based Love for Lily.

TRENDS Diary, a project of the Community Foundation of Boulder County, is a place for Boulder County residents of all ages to share personal experiences that relate to a pressing community need. The focus, for now, is on our shared need to connect and solve problems, despite the increased isolation we’re all experiencing during the COVID-19 pandemic.

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Dear TRENDS Diary,

We have families going through six security checkpoints to get in to see their babies. That makes you feel really safe and really scared. The top two emotions of families in the NICU are isolation and fear.

You just had a baby. That’s a joy. But your baby is also very, very sick. Your support system may not be allowed in, or you and your partner have to take turns at the bedside. Sometimes families have watched their baby be resuscitated five times in their first five days of life. There’s no joy in that.

We have weekly groups, now virtual, for moms and families and a post-NICU group. We have a private chat group for families who need support in the NICU, and then specific ones for moms, dads and loss/grief. We’re also offering a supporters call for medical teams who are needing support around all the changes, all that’s being asked of them, of families. There’s so much security and so many hoops you didn’t use to have to jump through.

One of the most powerful things we do is ask moms and dads, how are you? Every single person in their world is asking about their baby. Nobody asks how they are.

Our why began because my daughter Lily was born extremely prematurely and spent 3.5 months in the NICU at UC Health in Aurora. She came home on hospice and passed away shortly after. I wanted to understand where the support was. There were people around me and my husband during that time, but in terms of people who understood what we were feeling, we were alone.

That was our why. Our why now includes so many families and babies that we have the honor of serving. We’re seeing communities be built during a time of crisis. There’s still good happening, despite the chaos.

– Sahra Cahoon, as told to Shay Castle. Ms. Cahoon is founder of Love for Lily, a nonprofit providing support for families with babies in the Neonatal Intensive Care Unit (NICU).