Our NICU Story: The Longest Month of our Lives

I dragged my feet on this post, becuase I still struggle to talk about this time of our lives, but it's the last day of September, NICU Awareness Month, and it's finally time for me to "put pen to paper."

Bittersweet moment. My daughters have arrived, but I can't hold one of them for hours...

In April of 2017, we spent 30 days in the Neonatal Intensive Care Unit with one of our twins, Elle. Her newborn twin sister was at home with my mother (developing a bond that I missed out on), and big brother, only 19 months old, was running around ooing and ahhing at his new baby sister.

To say that this time was difficult is more than an understatement. I experienced too many emotions to list out here, but I can tell you that on the day I was discharged from the hospital myself, only one baby in my arms while another still lay in an isolette, my husband and I cried so loudly that the nursing staff had to quickly shuffle us out of the hall and into a private room so as to not scare the other parents...

Nothing major happened to be honest. Elle was never intubated. Never coded. Never attached to an EEG. She simply had to grow and feed. And yet I spent every morning at her bedside waiting for rounds and worrying. Every evening I called the nurses to check in on her. It was the longest month of my life, and I was crushed to lose the normal newborn experience I had spent nine months preparing for. My family wasn't together and I was stressed, exhausted, and scared.

Elle's NICU graduation day!

The best part of that month was a navigator offering me a referral to our county's Child Development Services Agency, and our random assignment to our case coordinator, Cate, when we finally went home. Cate quite literally got us through the next three years of Elle's life (emotionally and logistically). As she supported me through all of Elle's many needs that continued post-NICU, like extra doctor appointments, speech and physical therapies, hearing tests, and more, I asked her for a list of organizations that offered financial help. Despite the fact that Nick and I both worked full-time in well paying jobs, our medical bills were crushing us.

That is when I learned about Bee Mighty. This organization "was established so that families can focus on each other and concentrate on the development of their child without the added stress of financial ruin." For the past two years they have helped us fund Elle's speech therapy, since speech is her biggest delay and also our most costly medical expense. Words can't express how much we have appreciated their support.

Elle has progressed tremendouly with these therapies and support services over the past few years. She is a happy, loving, and energetic three-year-old who loves her brother and sister dearly. You can read Elle's feature on Bee Mighty and learn more about our story here.

Elle, age 3, enjoying a family boat ride!

Many NICU graduates will go on to require more support than a child born at term. This can look like extra doctor appointments, medical equipment, or therapies like speech or feeding. Not only is that emotionally draining, it can impose a huge financial toxicity for parents already stressed to the max. There are many other families like ours in need of a little extra support.

Elle's therapist recommended this scooter to help with coordination and balance!

Bee Mighty does more than financial support. They provide meals and events for local NICU staff and families, host reunions, and connect NICU grads with fun and safe activities like germ-free Santa experiences! If you are feeling the warm an fuzzies right now after learning about this amazing organization, please consider supporting participating in their upcoming fundraiser or volunteering with this amazing group.

Bee Mighty normally raises most of their funds through their annual gala. They have pivoted to host a virtual event to still raise funds to support their families. "The “Bee Something for Bee Mighty” gala is a commitment to keep our community and the delicate NICU population safe.  While we cannot celebrate the miracles of Bee Mighty in person this year, we remain committed to supporting Bee Mighty families through our ‘Bee In This Together’ fundraiser.

NICU families need your support more than ever!  Families are losing income, and medically-fragile children are limiting doctor and therapist office visits to avoid exposure.  However, the need for services continues to rise.​" You can virtually "Bee In This Together" here.

If you can't donate money but want to donate time, they are also looking for volunteers on their social media/newsletters/marketing committee and/or on their grants committee. You can each out to their team to learn more here.

And most importantly, it is Awareness Month, so be sure to share this post with family or friends to spread the awareness. Thanks for reading our story.

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