I remember sitting in the chair enjoying kangaroo time with my daughter when rounds happened. They asked me “how does Monday sound?” and I naturally responded, “for what?” Poppy still had a feeding tube in at that point so I thought their response would be for that to be removed since everything seemed to happen in steps while we were in the NICU.
And yet, the world kept going. Outside, the weather turned to summer, then to fall. In the time she was in the hospital, it snowed, rained, was in the high 90ºs, and the leaves began to turn. The Cavs won the Championship, almost an entire baseball season passed, and football season had started. Holidays- Cinco de Mayo, Mother’s Day, Memorial Day, Father’s Day, Independence Day, my birthday, Labor Day, our anniversary, all kept happening.
Few have had their relationships tested like those who are parents to a child in the NICU. Even the strongest, most resilient marriage can be pushed to the breaking point when your child is fighting for their life. As a mother, you’re going through the hardest thing you’ve ever been through, you’re being tested to your limits every day- and your rock, your confident, the person you GO TO when you need to be supported is going through the same damn thing.
That thought haunts me a little bit to this day. If I had waited for a response from a forum, it would have been too late. If I said wait until the morning, it would have been too late. I am so happy I listened to my body and that I trusted myself. Trusting yourself carries you through your time in the NICU. Your baby sees several doctors, nurses, NPs, and therapists.
Being a parent is unlike how I envisioned parenting. Of course, I didn’t think that I would have a preemie. We often talk about what our children have overcome with family & friends, which we should because they are little warriors. One thing I think we do not talk about enough is how this experience impacts ourselves, specifically with post-partum depression and anxiety. Going into pregnancy, PPD was the furthest thing from my mind. I wasn’t concerned about it at all since I hadn’t been affected by depression in the past.
Even with my baby in the NICU, I wasn’t concerned about PPD. I was concerned about my child and poured myself into making her well: her stats, A’s & B’s, lung development, weight gain, making sure I was pumping enough… basically worried about everything but myself. I spent most of the time at the hospital with her, some days even forgetting to eat real meals and showering. Any time I spent at home while she was in the NICU was guilt-ridden. If it wasn’t for the NICU camera, I probably would have slept there.
The real trouble for me started after my daughter was discharged from the NICU. I was terrified and elated. Our dog was so excited to have us all home and loved the new addition to our family. My husband and I were so happy to finally start being “normal” parents.
Slowly, I started to change. I was so anxious when I wasn’t near her or couldn’t see her. I wouldn’t be more than a room away from her. If anyone held her, I was right beside them. I started not trusting my deep sleeping husband to wake up when she cried, so I was only sleeping a couple hours at a time. I was terrified to leave the house, because I didn’t want her getting sick. I would have nightmares that something would happen and we would have to return to the hospital and the NICU. I only wanted my mom and husband around her, which created a lot of in-law drama.
When my husband’s grandma passed away about a month after our daughter came home, I was crying and shaking the whole way to the funeral because I knew there would be a lot of people there who would be seeing her for the first time and did not understand what we had just been through. They would only be interested in our beautiful baby and wanting to hold her or touch her. I was in a perpetual state of distrust and fear anytime I left the house with our baby.
Finally, two months after being discharged from the NICU, my best friend visited us from out of town and said a statement that changed my life.
“Ash, I think you have PPD”.
No one had said that to me. I was floored. We spent the next hour talking about how I was feeling and my reactions to things. Being a scientist, I’m very logical and after my friend expressed her concern about my mental health, I really evaluated myself and realized that she was right. How I was feeling wasn’t normal.
I spoke with my husband about it and he didn’t realize that I felt so out of sorts. He assumed as I did, that these were normal new parents emotions. My mom thought I possibly had PPD, but wasn’t sure since this was the first premature birth in our family. It’s difficult to truly understand someone else’s emotions. I tend to hide my feelings, so that I look normal on the outside while I’m screaming or crying on the inside. So, I understand why my family didn’t see what my best friend did.
Once I figured out that my anxiety was different than normal, I set out to make things right. I worked with my husband to create an open discussion about my feelings. When I started to feel irrational fear, I told him right away and we worked to find the triggers and remove them from my environment. Slowly, I got better at seeing the difference between normal anxiety and PPD anxiety. At the same time, our daughter was being cleared of her prematurity concerns. She was growing and thriving and we loved every minute of it.
Even though I was working hard to push past the anxiety, I still had bad days. Going back to work after maternity leave was a nightmare. I cried for a week. I asked for updates and pictures while I pretended to do work. I had a really hard time adjusting to working and pumping during the day. One day, I worked myself into a frenzy because my husband wasn’t answering his phone. I thought “what if he died and our infant daughter was crying and alone”? When I finally got a hold of him, he told me that he and the baby were taking a nap. How had something so simple and innocent make me assume the worst?
I’m still not 100% back to myself, but honestly, I’m not sure I ever will. Having everything up-ended by an early birth is traumatic. I tried for as long as I could, but eventually took a very low dose of medication for a few months to help my recovery. Now that I’m not taking it anymore, I do feel more like myself. I still have bad days, but they aren’t as bad as before. My best friend recently visited us and commented on how much better I seem.
The reason I wanted to share my story is because mental health is not talked about nearly as much as it should be with NICU parents. No one I asked had any good recommendations for therapy, even my primary doctor couldn’t give me a recommendation. I felt like I knew what I needed but couldn’t find someone to talk to who specialized in PPD and understood the NICU experience. I am so thankful for the support groups we found for NICU parents. Even sitting in on one without saying anything was helpful, just meeting parents who had been right where we were and made it out the other side.
Being a NICU parent is the one membership I didn’t expect, but it’s a protective group. No one understands what we went through better than other NICU parents. PPD is a common problem for parents who have children in the NICU. Please speak up and reach out if you feel like I did. If it’s just to talk or have company, that’s okay. You are not alone. If I learned anything from our support groups, it’s that.
As they continue to grow older, most will forget their early start, but as parents this is something we will never forget. Being told to terminate Leo, praying for each week of continued pregnancy, and then the weeks that turned into months as we prayed for the boys to grow healthy and strong enough to bring home from the hospital.
It is also the best day ever when you find out your friends have gotten to leave the NICU as well. It is also the best to know that some become friends for life. I know other families come in when we leave, and I will always be there for those families that need someone to talk to. Live each day like it is your best even when it is hard and you too will make it through your NICU journey.