I recently served on a hospital committee tasked with building a tool for how to discuss pulling the plug, withholding life support, redirecting care. Whatever they are calling it these days. I was with doctors, nurses, social workers, parents — and shocked to learn that getting parents to understand something is really WRONG is actually their biggest struggle. And I can see why.
Being a NICU mom is literally dreadful, always stabilizing for the next stage, and that NICU experience never leaves you. I see four stages:
1. Early delivery: fear, anger, powerlessness, followed by the daily grind of staying in the hospital, driving across town, driving hours for a visit, or staying in a Ronald McDonald House, hotel, or abandoned wing of the hospital until it is renovated (as my friend did).
I have published survival strategies for this stage elsewhere. Help someone you know by reading or sharing my article Surviving the NICU: Finding the Strength.
2. Going home. It feels heroic! It is a huge success! But it’s not over; you now have in-home therapies, followups, specialists, and the long slow process of infancy, which is much longer if you’ve spent 3 months in NICU just to make it to your babe’s due date, and go home with significant delays. Then come toddler years and elementary school. The whole time, you are seeing how far and how hard you can push and yet how completely and miraculously you can nurture. Therapies, teams in and out of school, hopes, dreams, disappointments, prayers, successes, frustrations, yelling matches even! Everyone is working very hard.
3. Feelings. It was years before a professional explained that I had PTSD. That helped explain the helicoptering, worry, sadness, telling strangers all about it, euphoria, obsession with choosing a school, integration, coping — you can’t have #2 without #3. I advocate talking it out and getting some regularized self-care — not a task for you to do, but some scheduled or outsourced service such as massage, cleaning lady — read more about how to make it effortless on a previous blog post here.
4. Landing. Getting a handle on where you’ve landed as a family and considering independence — long term planning for exiting school, work possibilities, post-secondary school, or job training. Long term post-parent planning (estate, safety net, housing, disability, etc). As our NICU superhero has become a teen, we are entering this phase now.
Those hard parts though, #2 and #3, are left out of preemie stories in the media. Our superhero was born 3 days after multiples that continue to make the morning news. I remember waiting for the lucky parents to finish chatting with Matt Lauer before the rest of us were allowed in to visit our own fragile babies. “It was scary but they are starting to go home,” the smiling parents said. “Heartwarming,” Lauer probably said. On their birthdays those kids are on the news, lined up in high chairs, crawling, sitting in a row at the feet of their smiling mom. My friend who stayed in that abandoned hospital wing laughs with me — if only it were that easy, one milestone after another. That story sells, fundraises, and reassures. But it’s only partial.
If you’re interested in documenting your NICU story, I would be honored to work with you to do just that.
I’d also be happy to speak to your group of parents, medical, or educational staff.
Email me at Angela@AngelaLTodd.com for more information.