By Jill Marcum

This article was featured in the 2019 issue of CONNEXIONS magazine.

After 100 days in the NICU with our twin boys it was no surprise that I developed some general anxiety.

As the years passed, thankfully, the anxiety lessened. I had no issues going into the hospital for routine visits; I even volunteered with other “NICU veteran moms” to provide meals for parents who were currently in the NICU.

A couple of years ago I even had a very close friend who needed support in the NICU with relatively minor issues with her baby, and I had no problem being there for her. I felt that each of these visits helped me in my healing process. I felt like my NICU days were “all behind me”. I had moved forward and now it was just part of my story, a part of my past.

Until one day it wasn’t…it was part of my present once again. No, I didn’t end up with another child in the NICU, but after years from this journey, I was completely blindsided with Post Traumatic Stress Disorder (PTSD).

It just so happened to be the week of my twin boys’ ninth birthday, so some of the bittersweet feelings of that time in our life were already in mind, but they were just distant memories. I received an unexpected phone call that a dear friend of mine had complications at birth which resulted in her baby boy fighting for his life in the NICU, the very same NICU my boys had been in nine years prior.

All of those feelings and emotions that had been placed in their safe little box of memories was ripped wide open. Every horrible feeling of fear, anxiety, despair, and anger came flooding back all at once, as a sucker punch to the gut. Emotional scars I thought long healed were bleeding again, as I hurt for my friend and for my own experiences. I was suddenly paralyzed by PTSD. I was suddenly transported back nine years to my NICU trauma. For any parent who has been fortunate enough to not require a NICU stay of any duration, it may seem unfathomable to be affected in this manner.

In the days and weeks that followed, I tried to make sense of these intense feelings. I cried multiple times a day, along with experiencing sudden bouts of shortness of breath. For a couple of weeks, I was barely able to function with my daily routine. The littlest things could trigger an overwhelming fight or flight response. Noises like the beeps at the grocery store checkout, the smell of hospital soap, or my phone ringing (fearful someone is calling with more bad news) were enough to set me on edge.

My senses were so hyperactive that someone simply walking up behind me or touching me could make my anxiety rise.

My appetite and enjoyment of food vanished.

I had little desire to participate in things that once brought me joy.

My sleep began to suffer greatly, with alternating insomnia and oversleeping, along with erratic dreams.

For a short while, I had this feeling of not wanting my boys to even be out of my sight or care. On some occasions, I had anxiety about driving. Being intimate with my husband most times seemed too big of a task or would make me cry and I did not understand why. After doing a little research on PTSD symptoms, I found most of these to be common side effects, but this realization didn’t lessen the blow.

As the weeks and months progressed, I felt the ebb and flow of PTSD. Some days I felt normal; some days I did not. It got to the point that I “looked okay”, but inside, I felt an emptiness that couldn’t be explained. Eventually, thoughts arose that were not mine, nor healthy, as ways to make the pain go away. It was at that point I knew it was time to seek help.

I enlisted the help of trusted friends, my doctor and a therapist. They have all been so supportive in helping me regain some clarity so that I can process this reemergence of emotions and move forward.

I know I will still have ups and downs, but now I know I am not alone, and I know I CAN survive this, just as I survived our time in the NICU and survived all the other curve-balls parenthood has thrown at me. I want others to know that they are not alone, and you can survive this, too.

Below are a few practical things that have helped me with PTSD:

  • Know your enemy; research PTSD. Validating my symptoms helped me realize I was not alone. PTSD is a normal response to a not-so-normal trauma, such as an extensive NICU stay.
  • Having others pray with me. I am a very spiritual person, but it took me several days to even pray again and had difficulty expressing myself in that capacity for a few weeks. Don’t neglect the supports that have helped you in the past.
  • Eat! A person cannot function and heal without fuel. I asked a friend to check in with me to make sure I am eating.
  • Know your limitations! I wanted to be there for my friend who was currently in the NICU, but I knew I had to be reasonable with myself about how much I could and could not be involved. I set boundaries and gave myself space from the situation by not checking in every day, but helping in some other practical ways. Also, give yourself the slack needed in your daily duties; it is okay to order out or ask someone else to handle the dishes for you, or handle the kids at bedtime.
  •  Communicate with your larger support system, spouse and even children about what you are going through and basic things they can do to help (see above). Kids don’t need to know every detail, but enough to know that you may not be 100% yourself and you may need to take some quiet time (see below).
  • Self Care is important now more than ever! I attempt to sit daily, uninterrupted with a hot cup of decaf tea (caffeine only seems to rev up my anxiety), listen to some relaxing or positive music (I have an “everything will be okay” playlist), and diffuse essential oils while I read or write. When I am at my worst, I may ask for a few hours and paint for a distraction.
  • Lastly, consider seeking professional help. I just started therapy and looking back, I wish I had pursued it earlier before PTSD had taken such a toll on me.

No one ever anticipates how a pregnancy or delivery will go, and sometimes when obstacles throw a wrench in things, you have to do what is best for yourself in order to take care of those around you.

Jill is a wife of 13 years and loves being mom to her nine-year-old twin boys. Together they are NICU veteran. Jill also delights in volunteering in a Bible education ministry each week and loves to watch design shows. She is currently taking online classes to work in medical billing/coding.

The Fetal Health Foundation is a parent founded non profit helping parents who are experiencing a fetal syndrome diagnosis.  We’ve been there, and we have help and resources. Contact us.

Read more NICU stories:

The Best Possible Chance at a Fantastic Life

Eli’s Story: Finding a Miracle at the End of a Diagnosis

The Happiest Little Baby: Chase’s CDH Survivor Story