Seems like the way I do awareness months is to drag my feet until the last day, huh? But it IS still September, so here we go…
The Neonatal Intensive Care Unit is where our lifelong journeys with both adoption and cystic fibrosis began.
During Joanna’s 34-day stay in the NICU up in snowy South Dakota in November/December of 2019, we became a family of three (and part of an extended birth family) as we transitioned from visitors to Mom and Dad. It’s where we learned how to hold, soothe and care for a 33-week preemie, and where we started learning how to manage her cystic fibrosis.
We spent hours and hours taking turns holding our precious girl. We introduced Joanna to friends and family who were able to visit (thankfully this was 4 months before Covid hit). We listened to our favorite songs and lay on blankets and pillows from home to try and bring some of ourselves into the sterile environment. We crammed our coats, computer bags, snacks, adoption papers, books, everything we could into the cupboard in the corner. Taped up pictures and scrapbook pages made by the sweetest nurses celebrating little milestones. I kept cardigans, a robe, and a pair of Crocs at the hospital. I had a little caddy in there with pens, notepads, chapstick, and everything I might need during the day. We FaceTimed with loved ones, phone resting on the plastic lid of the isolette that helped regulate her body temperature. We arranged her stuffed animals and gifts wherever we could, and eventually set up a Christmas tree and nativity set.
We got into a routine. We ate quick, quiet breakfasts at the Ronald McDonald House before rushing out into the snow to get back to our baby– Mike went first, and I took a little longer to get ready and listen to the news in solitude (which was my first lesson in taking little bits of time for myself as a mom). We ate meals in the hospital cafeteria that were graciously donated and saved us lots of time and money, but didn’t always leave us feeling the best. We said prayers together as a family before walking back across the street for the night. We watched TV reruns and old movies, did work, filled out adoption-related paperwork, managed our household from 90 miles away, and were only occasionally bored. We met amazing nurses, practitioners, therapists, doctors and support staff who each brought a unique set of skills, gifts and heart to their work. While everyone was great, we definitely had favorites 😉 and relished the days we got to spend with the nurses and doctors we knew we could relate to or joke around with. The days were long, and sometimes hard, but every moment was precious.
Our girl grew and thrived and was loved in the NICU. We learned about so many generous people in the community who pour out love to families like ours on a regular basis with gifts of snacks & treats, baby goodies, blankets, toys, books and more. We felt just as cared for as our baby.
I’ll also add that as an introvert it’s one of my greatest achievements to have survived five weeks of 12-14 hour days where another person could come into my space at any given time. 😅 But I would do it all over again for my girl.
All in all, we had a wonderful time in the NICU, and I realize that is not the typical experience. We hadn’t just gone through a high-risk pregnancy, or a c-section, didn’t have other children at home, and were able to drop everything and focus on the joy of becoming parents. And while Joanna certainly had some growing to do and a lifelong health condition to navigate, she had very few complications and was in stable condition during her time there.
We met a few other families whose babies were truly fighting to live, or facing scary long term effects of premature birth and/or health conditions, and we heard some heartbreaking stories. While we were basking in the rosy glow of our tiny but healthy baby, I was very aware when I walked into the hallway that any other parent I encountered could be having a terrible day. Any interaction with other parents was tense at first, like we were nervous to ask them how their day was going, and vice versa. Most of the parents didn’t talk to others at all. That was so hard, because I felt such a connection with them… it was hard to know what to do, so while we all quietly crossed paths, I prayed for God to carry them as he was carrying us.
That was our experience, but some things about the NICU are universal, so here are my “tips” or encouragements: If you know someone whose baby is in the NICU right now, please don’t wait for them to say what they need. Go ahead and send a gift card for coffee, takeout, or a big box store. Send it to their home or to the hospital. If you’re close with the family, ask what their days are like and get some gift ideas from the conversation. Some of my favorite gifts were tea, chapstick, little snack bags of trail mix, Target gift cards, and special NICU baby clothes with Velcro closures to accommodate Joanna’s wires and tubes. I also picked up a few cozy pieces of clothing for myself because of all the time I spent sitting in the recliner with Joanna. We were away from home, too, so we still had to buy breakfast food for ourselves and some meals out when we got sick of hospital food. We were also able to have a few “date nights,” because as the nurses reminded us, we would probably never have such skilled babysitters again! I would also recommend a massage gift certificate as a “homecoming” gift for moms and dads, because all of those sweet, snuggly hours in the recliner can do a number on your back. Some other ideas would be: help with cleaning or laundry at home, school pickup, taking the family’s other children to a movie, lawn care, snow removal, etc.
If you know someone who has been in the NICU, no matter when it was, ask if they’d like to share with you about it. (They may not want to, and that’s okay.) But it’s a unique experience and a place that can benefit from community support, even during the pandemic. You might consider donating new or used baby clothes, baby gear, or gifts for the families and babies.
I would also encourage you to support Ronald McDonald Charities. They were our home away from home and were just the best! (They serve all kinds of families with children who need to be in the hospital, not only NICU families.) Every location is a little different, so call for specifics, but I know they accept donations of food, household items and gifts for the kids and families. And this next idea wouldn’t fly during a pandemic, but make note for the future– during our stay, one very sweet family whose daughter is a NICU nurse brought their Thanksgiving feast and their entire family to the Ronald McDonald House and shared everything with any of us who wanted to join them. It was the sweetest thing, and I know that others in that community would bless the NICU staff with holiday meals, too. If you have a creative idea, just reach out because you never know what’s possible until you ask.
We are so grateful for the strong start our family was given during our baby’s NICU stay. The place and the people are forever in our hearts. 💗