Screaming on the Inside

This is Maverick. He was born at 39 weeks at Mt Hood Legacy Hospital in 2016. He was born with a life-threatening condition called persistent pulmonary hypertension of the newborn (PPHN) which occurs when the baby’s transition from the womb to the world outside fails to signal a shift in how the body circulates blood. We were fortunate that doctors were able to identify that Maverick was having trouble breathing when he was born. While I was in recovery from my C-section, Maverick was in their makeshift NICU fighting the CPAP machine. After four hours with no improvement they decided to transfer him to Randall Children’s Hospital immediately. He was transferred first and then about six hours later I was transferred. They couldn’t transfer us together due to staffing issues but I was able to receive updates on his condition¬†from the nurses until I could join him.

During our NICU stay, I often felt like I was screaming on the inside. You see, I had to keep up a strong exterior because I was now a mom to a sick child, a mom to a toddler, and a wife. Because of this false front nurses, doctors, and nearly everyone around me assumed I was doing well. I felt like I had to keep up appearances and put aside my complex feelings for our child’s sake and everyone around me. Being unable to show my true emotions and allow myself to process them was the hardest part of being in the NICU. I think another incredibly challenging thing about my NICU experience and what added to the isolation was that Maverick was not a textbook NICU baby, and PPHN is very rare so it was hard to find a lot of other cases like ours.

My anxiety in the NICU was constant and it continued to be persistent long after discharge. When Maverick turned a year old, I realized I still had a ton of anxiety that had manifested in other areas of my life and it hadn’t diminished in intensity,I had routinely overlooked it. I started seeing a counselor and began to see the light at the end of the tunnel. Working with my therapist, I was able to identify that seeing other people have “normal” births was a huge trigger, the stories I told myself about what could still happen to either one of my children were triggers, food was a coping mechanism, and I was able to see the anxiety that manifested in every crevice of my life.

In working with my therapist we decided that there were three things I could and should do. The first was to stop breastfeeding: She suspected that me breastfeeding one time a day was creating hormonal imbalances that were exacerbating my anxiety. Second, I needed to practice true self care: Not just go get a message or a pedicure, but eat well, get enough sleep, and have true “me” time. Third, I needed to work through my anxiety using an anxiety workbook. To be honest: I have not yet made it to number three ,but I can tell you that by implementing one and two I have been able to better manage my anxiety already.

I find now that we’ve been home for over a year and half that I am able to feel grateful for the strength I found in myself through our NICU experience. It made me face things I didn’t think I ever could and now I feel confident my experience can offer something to others to help them cope. I’m really glad to be a part of NFNW because the they provide a safe space to talk about our experiences which helps us all feel less alone.

I care about being an active member of NICU Families NW. I do what I can to help other moms and dads in the group through replying to posts, volunteering my time, and donating what we can as a family to support the organization itself, because the NICU was one of the most challenging experiences my family has been through, and I want to do everything I can to make it easier for others.

If I had any advice to give others struggling with their time in the NICU, it would be to identify who in your life feels like a safe person and make a point to tell them how you’re really feeling. If you can see a therapist, the time you put into healing yourself will be paid back to you in feeling more balanced, less overwhelmed, and in your ability to be present with your family. The NICU experience is so complex that having peer support and professional help becomes critical to properly process the 10,000 different emotions and thoughts you have while you are there and when you come home.