How This Extra Step Made Our NICU Stay More Bearable

September 8, 2014

When my husband and I found out we were having twins, I was both excited and scared, and one of the first things my then-medical-student husband said to me was, “You know, they’ll probably be in the NICU for a while.” No, I didn’t know that, but after he said it, I started to read about babies in the NICU and preemies and I was, I thought, prepared to spend some time in the NICU with our little ones.

I delivered at 31 weeks after getting HELLP syndrome. My husband was out of town and I had a crash c-section because the babies heart rates started to drop as soon as the epidural was placed. My babies were whisked away before I could really look at them, but I knew they were in good hands in the NICU.

I was unable to visit the NICU until 2 days after delivery, but I was getting rave reviews of our babies (of course!) and of the nursing staff from my mother and mother-in-law who were spending as much time there as possible. When I was finally able to hobble down the hall in my gown, pushing my own wheelchair, I was very anxious to meet the people who had been caring for our little ones and to see the environment where they would spend the first 11 weeks of their lives. (Of course, at the time, I had no idea how long their NICU stay would be).

We had fantastic nurses the entire time we were in the NICU and they helped us get through Christmas, New Year’s, Valentine’s day, my birthday, and our original due date with sympathy and grace. They comforted us when they knew we needed it, answered questions (all the time!), heeded our requests, and most of all cared for our babies with so much love. We had great primary nurses – and those are women who I hope to stay in touch with for a long, long time – but it was the nurse I met when I was meeting my babies for the first time who made a huge difference for me in the NICU.

first_holdingSarah (not her real name) was soft spoken and I remember noticing how nimble her fingers were navigating all the lines and tubes attached to our twins. She wore the requisite black scrubs and tennis shoes and had a low ponytail. Her voice was soft and soothing and she took her time moving from one task to another. I felt so lucky to have her taking care of our babies, and she was the one who first helped me hold them. But for some reason, after that day, she did not care for our babies again. We had different primary nurses (equally as kind and skilled) and she was never assigned to our kids again.

Fast forward a few weeks and our twins had been moved to the Intermediate Care Nursery (ICN). Sarah stopped by to say hello and drop off a flyer for a support group she was leading. At the time, I thought going to a support group might be a waste of my time and I didn’t think I wanted to hear what other people had to say about their NICU experience. Ours had been relatively easy – aside from a battle with NEC and double hernia repairs – and I just wasn’t sure I wanted to hear how bad or good it had been for everyone else, but I went anyway.

There were around 12-15 other parents in the group; mostly moms, but there were a few dads, too. These were people I’d seen every day for several weeks and I realized when we introduced ourselves that the only interaction I’d had with them was a passing smile as if to say, “Hello, this is a tough place to be.” I had been too terrified to interact with anyone else in the NICU up to this point and I’m still unsure why. During the one hour support group session, I was able to hear about the challenges other people faced with their children, their caregivers, and mostly their families. All of our babies had different challenges to overcome, but so much of everything else was the same and it was so refreshing for me to know that we weren’t the only ones growing weary of the day to day life in the NICU.

Sarah only hosted the support group one time while our babies were in the NICU, but it made our last few weeks there a bit more bearable. There were multiple times when I saw other parents who were in the support group and was able to say hello and ask them about their babies. It was always great to hear about the progress other babies were making and to see the excitement on the parents faces when they were discharged. It gave me hope and provided some much needed distraction.

I didn’t become lifelong friends with any other parents in the NICU and I don’t stay in touch with anyone we met, but taking that extra step and going to that support group opened my eyes to the challenges other people were facing and made me feel much less isolated. It amazed me how much it helped just to talk about everything from the cafeteria food to the anesthesia interns and respiratory therapists! I’m so thankful that nurse Sarah hosted this group and I hope she continues to do so for the parents who are facing the NICU.

I strongly recommend that if your NICU has a support group that you attend, even just once, to give you a little perspective and a few friends to say hello to as you scrub in each day. If your NICU doesn’t have a support group, think about starting one. In retrospect, I wish I’d had more options for interacting with other parents because it can be a little awkward to interact bedside. It doesn’t have to be anything formal, even just a time when everyone goes to the hospital coffee shop to get a little fuel for the day and some fresh air. Interaction with people going through similar experiences is amazingly valuable and really helped me keep my sanity for our last few weeks in the NICU/ICN.

What about you – what made your stay more bearable?