I didn’t know a thing about the NICU before I started having kids. I knew my nieces had spent a week or two in one when they were first born. I knew I needed to wash my hands and arms up to my elbows with special soap using a hard brush. I knew going to the NICU when you were potentially sick was a huge no-no. I knew that was where babies went if they were born early or sick. Still, I had no idea what it’s like to see your baby in the NICU.
The reality is that seeing your child in the neonatal intensive care unit of a hospital is one of the most frightening things you can imagine. There are different experiences, of course. Some parents give birth to pre-term babies as young as 25 weeks and spend months at their infant’s side in the NICU. Other parents have a full-term baby with jaundice that needs to spend a couple of days under observation. As I write this, I have a friend whose son might be spending his first few days of life in the NICU and her experience with a baby at 34 weeks will be much different to the loss of my preterm daughter (who spent a few hours in the NICU) or the birth of my son (who spent 2 months struggling to get better).
Since there are so many different experiences, I spoke with several moms who gave me their version of what this experience was like.
Anonymous, 31
“I felt powerless. You're totally at the mercy of the nurses. We had one nurse giving us orders contrary to every other nurse, but we had to obey her when she was on shift and that was stressful.
I made sure my daughter had hairbows on every day because that was one thing I could control. I could also dress her in cute outfits. So, I did that every day. It was also hard to give myself permission to leave to get food or take a break. I felt guilty for enjoying time outside of the NICU.”
Katie, 35
“My daughter Molly was sent to the NICU because her white blood count was slightly elevated, which they tested because it was about 20 hours between breaking my water and delivery. She wasn't really ever in life and death danger, although the antibiotic they gave her could have caused deafness. She stayed a three days, not because of the white blood count (which went down within hours) but because her bilirubin level was high. But they never even gave her light treatment.
Overall, it was a bit frustrating. It made learning how to breastfeed harder; and only two people were allowed to visit her at once, so between me, my husband, and my mom, one of us was always alone. But of course seeing the other babies in the department, we were all extra thankful that our baby could go home in a couple of days with no lasting troubles. And one nice thing was that when I got discharged, I went home and slept 14 hours before going back to the hospital to be with Molly. I'm sure some people would find that horrifying, but it was so amazing to feel truly rested after my really horrible labor.”
Jenny, 32
“Initially, I felt hopeless and unfit as a mother in a sense because I couldn't birth naturally again. But soon after I stopped caring about that and began focusing on how to care for such a small, fragile life. It was frightening knowing that at any moment your baby could turn for the worse and if it went far enough there would be nothing you could do about it. The stress was high because I couldn't be there to protect her in anyway shape or form 24/7. I was quite optimistic because on day two of her 1.5 month stay, she was removed off the ventilator and she was able to breathe on her own.
The staff was amazing and did help me and my husband cope with the ups and downs of her NICU stay. Having her at 28 weeks was something that shook me. I learned a lot on how important it was to take extra credit of your body just in case it were to decide to birth your child before time. The NICU did great and I think if it weren't for them, my daughter Nivea wouldn't be here.”
Kim, 37
“We were in the NICU for 75 days. I was a total wreck seeing my babies there. Basically, it felt as though I had to do all those first-time mother things with an audience and that assumes that I even felt like a mother. That (feeling like a mom) took a long time to come. I was nervous about leaving them and I had anxiety about everything. The staff was good on the whole but honestly, I wanted to be involved in every facet of care and it seemed like maybe this was a surprise for them to experience. They didn't know how to handle me. I butt heads with a lot of the staff, especially residents and nurses. Don't get me wrong, we had some amazing experiences, but also some really bad experiences.
The NICU is such a complex experience. Not only at just a base level (my babies are sick and not well and they need to be here) but also because there are so many complex feelings, at least for me. Like the baby cuddlers, at a logical level I understood what they did and why it was important. But I hated seeing the cuddlers holding my guys after I stepped out of the unit for a break. Hated. it. It isn't a rational place, the NICU.”
Anonymous, 32
“My NICU experience was different than most I think. First of all, as an adoptive mother, I was excited at the opportunity to watch my child grow. To be able to actually feel her kicks, see her wiggle a little her arms and legs. The NICU provided us many bonding opportunities, which was extra nice as an adoptive mother. Time for her to learn our voices, our scent. Time for us to really digest, ‘we are parents now.’ They taught us how to best hold her, bottle feed her, baby CPR, a lot of stuff! It also encompasses that same fear, ‘is she going to be okay? Will she make it? Will she have any long standing disabilities? Will she be a normal girl?’ Fear of the unknown. The two steps forward and one step back process of the NICU. She would make progress, then something would happen. It was a long, 110-day stay. We were there the whole time for her, every night.
Although as I mentioned, the NICU is a scary place and I wouldn't wish that upon any family, for us it was a blessing. It showed us from day one how strong and resilient our daughter is. It allowed us to bond with her and really become her parents. Overall, I have positive memories mostly of the wonderful nursing staff being so helpful and supportive. I have memories of holding her little hand through the big circle on the side of what her incubator, and singing to her, ‘You are my sunshine.’
I remember being excited to personalize her stuff with our own blankets. I was excited the first day she was able to wear real clothes. Our first kangaroo time where I had the opportunity to hold her on my chest. Her first bottle feed. One of the bottle feeds toward the end where she ate so much the nurse got scared and her belly was distended (our daughter has always been a good eater I guess). I remember the joy of her finally being out of the incubator, in a regular crib. The night they made me sleep over so I can make sure I knew her night routine (all the meds, etc.). I associate the NICU with lots of joy. It was my first experience as a mother and although scary, it was a happy one.”
Kristen, 31
“My daughter ended up in the NICU due to meconium aspiration. I avoided the NICU for at least 6 hours. I can't fully explain why. I just know that I was scared, in pain, and I didn't feel strong enough to deal with it all. I didn't trust my emotions. I'm thankful that I was wheeled in, because seeing my daughter in the incubator for the first time, not swaddled, covered in cords and wires, with a tube running up her nose to feed her, band-aids from all the shots and heel pricks, an IV in her arm...I wouldn't have been able to stand. I instantly started sobbing. I couldn't breathe. No matter how healthy your baby is, it's a terrifying experience. It is the most helpless I ever felt in my entire life. And the guilt was so heavy I could hardly take it."
