PTSD and NICU Parents

Recently a family member sent me an article from the Wall Street Journal entitled, For Parents of Ill Children, a Growing Recognition of PTSD. As I read the article, I couldn’t help but cry. I felt so validated for so many feelings I’ve had over the last 18 months, and so much less alone to be able to put specifics words (and a scientific study) to those feelings.

PTSD and the NICU

PTSD in soldiers who’ve seen combat has just recently has become widely recognized, and now doctors are realizing that parents of children who’ve had either traumatic single medical events or ongoing medical conditions are also experiencing it. The article specifically talks about a study done on parents who had premature children in the NICU. They found that 30% of the parents received a diagnosis of PTSD, and another 30-40% of them experienced “significant symptoms that impaired their functioning.”

My feelings

I know that for me, personally, this has been true. But it’s a hard thing to talk about. In my situation, a part of me feels like I have no room to complain about anything – my babies are alive and doing well, which is so much more than many other parents can say. So many have suffered more than I have, and it feels like I should just be grateful for that. While all of that is true, it doesn’t mean it’s healthy to sweep all of the feelings I DID (and still do) have under the rug. For so long I was so focused on the babies – on making sure they were getting the best care, trying to learn as much as I could about their conditions, keep up my milk supply, and still managing real life outside the hospital and at home.

Now that the girls have been home for over a year, those three months we spent in the hospital with them (and the time I spent on bedrest in the hospital before they came) have left their mark. In some ways it seems so far away, like another life. And then in some ways it’s still lingering, ready to sneak up and whack me in the back of the head when I least expect it. I’ll have moments where I’m triggered by something and I’ll break down – I’ll hear a song I listened to driving to and from the hospital, get a whiff of that hand sanitizer smell, or see a flourescent light flicker in a certain way and I’m back there all over again.

I remember one day after the girls had already been home for a few months, I was walking out of the local Children’s Hospital following a regular therapy appointment. I had both girls in their stroller, happy as can be, and I was about to walk through the double doors that lead to the outside. For some reason, as I walked through those doors and felt the outside air hit all of us, I broke down. I had walked out of those very same doors by myself so many times, wishing so badly I could take the girls with me. And here I was just freely doing it! A few people stopped to ask if I was ok, and luckily I was able to pull myself (and the stroller) the rest of the way through the doors. I couldn’t even explain the mix of emotions – I was happy and grateful that I was finally able to take the girls where I pleased, terrified remembering a time when I didn’t know if I’d ever get to, and so sorry for the parents who don’t.

It’s also manifested itself in more subtle ways. When we first brought the girls home, I was very careful about who I let visit and hardly took them anywhere. I wanted to protect them from any change in routine or possible germs, so terrified they’d end up back in the hospital. I was so adamant about their routine (mostly their sleep and their feedings) and had a hard time letting anyone other than myself or Blake help. I still have a hard time leaving them with people – there are only a couple of people I feel at ease with and am actually able to do that.

What I’m Doing

There are several things I’ve done to help me deal with what I now believe is a form of PTSD, but I still have work to do. I’ve become active with organizations that help both premature babies or mothers on bedrest. I’ve helped fund raise for our local Children’s Hospital and spoken at fund raising events. I’ve shared our story (something that helps me a lot) as much as I can, in hopes that it will both help me heal and help others who might be going through a similar situation. We’ve stayed close with our primary nurses, doctors and therapists from the hospital during that time. To have a relationship with those people who we spent so much time with in our most vulnerable moments has helped so much. It’s like they understand what we went through at the time without me having to explain it to them or try to put it into words.

More than anything – we do not take a second for granted with these babies! We make the most of our freedom with them by taking them on as many adventures as we can. Proving to ourselves and to them that the 91 days they spent in the hospital was no time lost.

When I think about my feelings towards all of this, I can’t help but think of the song Rainbow by Kacey Musgraves. It puts it into words so perfectly, we listen to it all the time at our house. I included the song and the lyrics below, along with several pictures of the girls from the NICU.