I’ve been thinking quite a bit about our reality as NICU parents to a healthy, brilliant NICU graduate. Our child was born very prematurely and spent weeks in the NICU so he could grow and stabilize. My first experience as a mother of a baby was shattered in so many ways. Trauma still lingers, but I am so grateful for all I have learned from our time beside our little baby in his isolette bed. One thing I learned was that some people who really want to help support NICU parents really don’t know how they can. Here are some ideas we found helpful in our journey:
Don’t ask “How can I help?” or “Do you need anything?” Our experience with the NICU was a total and absolute shock. I needed more than I could ever articulate, and I hated asking for help even on my best days. What started as a let’s be on the safe side OB check due to odd pain, led to a 24-hour hospital admission for active labor and an emergency C-section to save a tiny 4-pound premie baby.
When I’m in shock, I often completely shut down. I managed to tell my husband how to pack a basic hospital bag for me, I managed to finish all the paperwork for the hospital admission while in active labor, and I gave basic info to my parents while my hubby talked to my in-laws. That was it. That was the limit of my mental capacity.
What followed was three weeks of trauma as I poorly healed from a C-section, pushed myself way too hard to spend time with my son, and remained isolated from the world due to COVID restrictions. I could not make executive decisions about anything—not even my son as I didn’t understand even the basics of advocating for oneself while in the NICU.
If you want to help a NICU family, explicitly offer them the choice of two or three specific things, being prepared to do them all if needed. This concrete communication can stab through all the mental fog and make it easier for the parents to say (and know!) what they truly need.
Let them know you’ve been there. If you’re a former NICU parent, please let them know you have had experience with the NICU. Point out how the situations are different (for example, if your child was in the NICU ill but not as a preemie) and don’t scare them with the worst possible outcomes. Let them know you empathize with the noise and machines and stress, and let them know you are there if they need you. This offers them the chance to ask questions or unload burdens, but it doesn’t compel them to interact with you at all.
Feed them! When our son was born, we didn’t get the usual church meal train when everyone stops by your house, oohs over baby, chats a bit, and leaves food. Our church and family were even better. These beautiful people were insistent on helping feed us even though they’d never see the baby and would hardly see us. Sometimes my husband and I would both be there when they brought food. Sometimes it was just one of us.
One time we knew when the food would get to the house but needed to stay at the hospital a few minutes longer, so the food was dropped off as scheduled and we got to it when we could without even seeing the givers. The blessing of food with no expectation is immeasurably valuable.
Some gave us gift cards for the food available at the hospital—crucial for me when I’d be stuck alone for hours at the hospital. Once I was released from my hospital room, I had no meal plan and the stress of buying food in the hospital on the days I was stuck there without a car for hours (still couldn’t drive yet) just added to the stress of knowing medical bills were coming.
Organize the medical bills. Or, offer to sit with the parents as they open and organize that burden. The emotional turmoil I experienced from opening these letters and fighting the institutions for accurate bills for months should never have happened. I eventually reached out for help and had a beautiful friend offer to walk us through what we truly owed, and thank God for her. Just know NICU parents might be slow to ask for help or a shoulder to cry on as they walk through the bills.
Do chores or run errands. Would they let you wash their clothes? Did they get the chance to even put together their bassinet or deep clean their floors like they had wanted to before the baby came home?
Buy and bring the preemie clothes. NICU parents are often crucifying themselves with guilt while in the NICU. It was devastating for me to realize I had not bought any clothes for my tiny baby boy. I had not one single piece of preemie clothing to even bring in my hospital bag. The day our son was born our sister-in-law went on a shopping spree and bought every piece of preemie clothing she could find in Target. There isn’t much in most stores!
My mother and sister then went to my house and went mad washing, drying, and packing it all. Those clothes were the first things we ever put on our baby. I didn’t get to buy any preemie clothes myself until I was finally released and hobbled into a secondhand store to add to our collection.
Establish prayer chains and group texts. In these stressful situations, so many caring people want to know what’s going on. The parents can barely string sentences together to talk to the nurses and doctors. Having to repeat every little detail can be time-consuming and overwhelming. Having one or two streamlined ways of communication makes things so much easier. If you’re an extended family member or a close friend, offer to be that communication buffer—the one to share information and field questions and comments before they ever get to the parents.
Ask what communication the parents want. Do the parents want daily check-ins from you? Do they want to know Bible verses that come to your heart as you pray for them all? Do they prefer less direct communication as they manage their new experience? Ask them. Don’t assume, don’t get offended, and give them the power of choice in the midst of this horribly powerless time.
Check on their closest family and friends. These people are often confused, hurting, tired, and just wishing they could do more. They need care and comfort, too!
Don’t forget them once they are home. Even if baby does get to come home safely, that family’s world has in some way been shattered. Innocence and ignorance of the pain of NICU is gone. Stress abounds. I couldn’t even admit I was traumatized by it all until my son was almost a year old. Please, check in with the parents every month or two at least if you’re friends. Allow them the space to share their grievances, no matter how small or odd or horrible they might seem to you.
They will never forget the impact of your help.