According to the CDC, preterm birth affected one out of every ten babies born in the United States in 2020. A preterm birth is when a baby is born too early, which is defined by the World Health Organization as any time before 37 weeks of a pregnancy. Although preterm births rates declined in 2020 from 2019, it is important to note there are still racial and ethnic disparities when it comes to birth rates. When we think about the Neonatal Intensive Care Unit, or NICU, we often only think about the babies and how they are doing, which is extremely important, and we do not want to discount. However, on the other side of the story there are parents, guardians, and loved ones who want to bring their babies home healthy.
Throughout life, there are certain experiences that can leave us feeling isolated, lonely, misunderstood, and unseen. One way to help create a sense of community is to share experiences to hear different perspectives and educate others, as well as meet people with similar experiences.
We spoke with three women who had children in the NICU, and they generously shared their experiences. Regardless of the hospital, you’ll see some similarities and some differences, which is the beautiful thing about our journeys. They are ours to own, and when we find others that relate, it can be special. Their willingness to share hopefully opens the door for more communication and ways to support NICU families. These babies and families are strong and thriving, and we love to see it.
CHARMAINE PATTERSON
What were some helpful things people did to support you?
While I was still a patient in the hospital, people would send us money, because they knew the hospital food wasn’t that great. That was such a big help because it made sure that I ate (which is easy to forget to do when you’re in that situation).
What was the least helpful thing? (I’m sure with good intention, but just wasn’t)
Ahh … I think one of the things that I needed the most was space. Obviously loved ones were concerned and wanted to help as much as possible, but having a child 10 weeks early was a lot to soak in. I didn’t really get the time to process everything that happened because people close to us were so hands-on. I think what would be helpful is to ask, “What do you need from me?”
Was there ever a time someone said something to you that was hurtful or insensitive?
When people first saw my daughter, they would say, “She’s so tiny!” It’s something that seems small, but for me it was a little insensitive because she came so early. I think it’s safe to say all parents want to have a healthy baby, so constant remarks about her size serve as a reminder of what she experienced and went through.
What did NICU staff members do to help you feel comfortable?
Oh my gosh, the hospital staff was the best! The thing that I really appreciate to this day is one thing the discharge nurse told us before we took our little one home. I’m paraphrasing, but she said, “When you take her home, she’s not a helpless preemie. She’s a baby, a newborn.” That really helped me see her as a child and not as the little baby laying in the incubator.
Another thing I appreciated was the lactation nurse. My breast milk supply was awful. I would pump every two hours and never even got an ounce. The lactation nurse could see how stressed I was getting. I kept telling myself that I couldn’t control her being early, but I could at least give her breast milk to help her grow. Unfortunately, I couldn’t. The nurse looked at me one day and said, “Stop. Formula is not the devil. You’ve done all you can do and you’re stressing yourself out. She’s going to be fine.” And she was, and still is!
How did you find time to care for yourself? What was helpful?
My husband is really helpful with letting me get one day a week to myself. I work from home (and daycare is expensive), so the little one is home with me during the day. It can get overwhelming, but I know I’ll have at least one day a week to relax, take care of myself, and even binge a Netflix series.
What is something you wish people knew or understood about your experience?
While it’s common, it can be really scary. I didn’t realize how serious it was until I was watching church the day our little one came, and the pastor told the congregation to pray for me and my husband. It hit me then, and still does, that she’s a miracle child. I think realizing the capacity and severity of the experience, especially if it’s something you haven’t gone through, and empathizing with it, means the world.
Advice or words of encouragement for other parents who may have their babies in the NICU?
It’s going to be OK! Take it a day at a time, and as much as you want your little one to come home, he or she is in the best place to receive the best care they need to grow. It’s difficult, but you’ll get through it and you’re not alone.
ELIZABETH
(LAST NAME WITHHELD FOR PRIVACY)
What were some helpful things people did to support you?
I had a really good friend who brought me postpartum clothing because my little one’s birth was emergent and unexpected, hence the NICU stay. We also had all four grandparents around to help with food runs, and they booked us a hotel close to the hospital and took care of our pup.
What was the least helpful thing? (I’m sure with good intention, but just wasn’t)
Several people commented on how small he was while we were still in the trenches. It was like a slap in the face each time.
Was there ever a time someone said something to you that was hurtful or insensitive?
No one really said anything hurtful or insensitive during our period of time in the NICU. But a lot of comments were made by my MIL about his preemie status when he was old enough to try solids. There was a lot of external pressure on his eating. Funny enough, the only person who didn’t pressure us or stress us out about his growth was our wonderful pediatrician.
What did NICU staff members do to help you feel comfortable?
The head of the NICU where we delivered was phenomenal. He took care to sit down during rounds with each family and spend time. He also told us we were the best people to judge how our guy was doing, and to bring things to the attention of the nurses if we felt they were important. It was empowering to hear that.
How did you find time to care for yourself? What was helpful?
Unfortunately, you just don’t. Especially if you’re breastfeeding or planning to. I was pumping or attempting to feed him every two hours. Fortunately, he was only in there for eight days. But they were eight of the longest days. I took showers and ate food, but that was about it. I attempted to gently move my body to expedite recovery. But it is very hard to be away from a brand new little one.
What is something you wish people knew or understood about your experience?
That people who have preemies or babies who need the NICU couldn’t have done anything to prevent it. I often felt people judged me for working out during my pregnancy and attempted to link that to his IUGR (intrauterine growth restricted) status and his NICU stay. Compassion is key for people going through the experience. And lotion, because you are so, so conscious of keeping your hands clean that we were all dealing with dry/cracked hands for the duration of his stay, and a few months post. You’re trying so hard to keep their environment as sterile as possible.
Advice or words of encouragement for other parents who may have their babies in the NICU?
Remind yourself that it’s temporary. Take advantage of having the caring, knowledgeable doctors/nurses and ask any question — no matter how dumb you think it may be. Try to go on walks, and take care of yourself with workouts, or reading, or shows.
BRITTNEY MASON
What were some Helpful things people did to support you?
Whenever people would offer to spend time with our oldest child while the twins were in the NICU, that was super helpful. It was also helpful to have people still offer to see us, since our NICU time was so long. We still had a want to connect with people, versus just dwell on the long hospital stay. Gift cards for places that deliver or had quick eats were nice, too!
What was the least helpful thing? (I’m sure with good intention, but just wasn’t)
People asking how much the babies weigh every day was exhausting. Especially with Clara who was unexpectedly tiny, and we were only waiting on her to gain weight to leave. It was a lot of pressure and made us kind of crazy to think about too much.
Was there ever a time someone said something to you that was hurtful or insensitive?
I think people commenting on your children in general is just a bit much, but hearing, “Wow, your baby is cute for a preemie” would get under my skin. Just say they’re cute, period, or don’t comment on their appearance, because they are also strong, fighters, and vibrant … so many other things to comment on.
What did NICU staff members do to help you feel comfortable?
After being in the hospital for over a month with the twins, I kind of started to go crazy. I came in one day and one of my favorite nurses could just tell, I’m sure. She asked me how I was, and I just started sobbing. It was hard. But she wrapped me in her arms, Covid restrictions be dammed, and said let’s go to your room and cry it out. And she didn’t just watch me cry. She cried with me. And I can’t tell you what it meant to have that level of support. (I started crying typing this out even.)
How did you find time to care for yourself? What was helpful?
Little tasks that don’t take long were the most helpful. Stopping to get coffee. Going to get a quick manicure. Taking an extra ten minutes at the grocery store to look at makeup, or something you like. Those are all easy, quick things that take you just enough outside of your normal routine that it feels like you really accomplished something or treated yourself.
What is something you wish people knew or understood about your experience?
It’s all-encompassing. And something you have no control over. It’s easy to think I’m sitting back letting nurses do everything or that I just sit and cuddle babies all day. There’s a rigid schedule and the more you can be there to help with your child, the better.
Advice or words of encouragement for other parents who may have babies in the NICU?
It’s OK to source things out. Either asking family and friends for help or hiring help. I had my mom and dad helping with Clara, a lawn guy, a house cleaner, and I ordered groceries to our door. It was the most helpful to remember that I couldn’t do it all and that even if people don’t know what they can help with, they will be happy to help if they can and are given some direction.
Jalysa King is a freelance writer in Indianapolis who loves all things healthcare and storytelling. Especially when it comes to telling peoples’ truths and lived experiences to create a sense of connection and community.
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