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What the 'This Is Us' Episode About the NICU Didn't Show

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After tucking the twins into bed, I began to prepare. Pajamas, check. Popcorn, check. Cozy chair, check. I grabbed the remote and turned on the pre-recorded show of NBC’s “This Is Us.” It took me two weeks to work up the courage to watch it; seven attempts at watching, three times slamming my laptop shut and saying, nope, nope, nope…not today. I cannot do it.

My preemie support group warned me this event in the show was a trigger. My friends and family further warned me that the main character Kate (also my name), had a 28 weeker (also my twins’ birth age) and named him Jack (also my son’s name). “This Is Us” — it really was us (no pun intended).

When we learned Toby and Kate’s baby was in the neonatal intensive care unit (NICU), my immediate thought was, “This is amazing  — everyone will have an insider’s look into what the NICU was like for us. Maybe they’ll understand why I talk about the NICU so much. Maybe they’ll understand why it is so hard for me to now visit a term, healthy baby on their birth day in the hospital. Maybe they’ll understand why I cringe when a term pregnant woman says she’s ‘so tired of being pregnant.’ Maybe they’ll understand my sadness, my anger, my jealously, my resentment.”

The NICU is such a lonely journey. You have a small world of friends and family who you allow to join you as you walk the halls, scrub your hands, and visit your baby. For everyone else in your life, you assume they understand it. You slowly learn that the NICU experience can never be fully explained. You can’t truly experience it unless you, well, experience it. You start to surround yourself with preemie support groups and NICU moms. It consumes you. You feel normal surrounded by these people. It’s like going to war and the only ones who understand are the soldiers who witnessed it with you.

I bonded with complete strangers because they saw me in my most vulnerable state. They were the front row witnesses of the most traumatic journey of my life. They saw me lose it when I found out my daughter, Lilly, had a hole and a murmur in her heart. They saw my questions, persistence, and exhaustion when my son could not seem to taper off the CPAP machine. They saw my daily tears when my twins’ couldn’t seem to get the hang of suck, breathe, swallow — something I never knew was so unnatural for a preemie. Our NICU neighbor hugged me on the elevator after I melted down because two term twin babies were going home, accompanied by a happy mom, balloons, and flowers.

I painfully and slowly got through the show. My heart raced, I had an apple sized lump in my throat, a jitter in my hands…I watched every minute. I watched the accurate NICU scenes. The accurate beeping. The accurate time Toby and Kate nervously talked to Jack the first time. The accurate event where they nervously asked why Jack’s chest was jumping all over the place. The accurate conversation when the doctor informed Kate on how to help her child recover from a bradycardia episode.

What the show didn’t show? The days racing to the hospital because someone was waiting at your baby’s bedside with “the news.” The days entering your baby’s room and not knowing what you would hear. The first few days not knowing what the next hour would hold. Sleeping by the phone waiting for the other shoe to drop. Waiting on head ultrasounds, NEC exams, ROP exams. The thoughts of “what if their prematurity leads to a disability and I become a mom of a child with special needs?” The days hoping your baby would “make it” through their breathing trial…and watching them fail it. The days when their levels were up and patiently waiting to rule out the most dreaded words to a NICU mom — “an infection.” Walking to the car with an empty carseat because your baby failed their carseat test, and feeling totally defeated because you psyched yourself up that they were coming home.

In the last few minutes of last night’s episode — I was completely jolted. Kate and Toby brought baby Jack home. They walked into their home smiling, holding a baby, and to a party of their family. Everyone was so happy. My heart hurt because this was the day life became the hardest for me. It was an experience I had not prepared. It was the day an overwhelming journey of post-traumatic stress disorder began for me.

We discharged and rode home — smiling ear to ear. “We’re bringing our babies home!” Immediately upon entering home, it was time for the next feeding. As we sat there, each holding a baby in the traditional NICU sideline position— they reverted. They weren’t taking their feed. Panic washed over me and I thought, “Where’s the nurse?” I had no one to share my fear with, to ask my questions, and I immediately began to panic and think we left the NICU too soon. My mom calmly told me, “You’re their mom, you know what to do.” But until now, I only knew how to be a mom with the support of my village — my fellow NICU soldiers and nurses. Suddenly, I felt alone. Terrified. Anxious. Overwhelmed. The next two weeks were a complete roller coaster of emotions as I adjusted to my new normal — and not the happiness I envisioned for myself after bringing my twins home after 76 days in the NICU.

Life was so safe in the NICU, in our bubble, surrounded by nurses who answered our questions and calmed us 24/7. I focused all of my energy and effort on getting Jack and Lilly physically healthy, on getting them home. I became a full-fledge professional on preemie issues, equipment, bottle feedings — I counted down the days. I had not even thought about life at home, until we entered home. I had not realized how traumatized our journey made me. How much support I would actually need. How lonely our newfound isolation from germs was about to be. How devastated I would be when learning our twins could not meet our friends until flu and RSV season was over. How hard it would be to resign from my career and deplete our life savings because our children could not yet go to a daycare.

I expressed this overwhelming anxiety I had to our pediatrician when the twins were two-weeks-old. She explained to me that I may have PSTD — common to NICU moms and told me to talk to my physician. I thought, PTSD? No way, no how. PTSD is what happens to military soldiers in Afghanistan. Nope. I should be happy! My babies are finally home.

I started to stew on her thoughts, really think about it. I realized I spent so much time focusing on my babies’ physical health, that I completely lost focus of myself and my mental health during their journey. I realized she was right, I was absolutely traumatized. And rightfully so.

Our journey was nothing that I expected. Although I jumped into our journey whole-heartedly and was willing to do everything and anything my twins’ needed, I never took time to absorb. I never took time to mourn the things I lost— not getting a baby shower, having friends flood my hospital room to meet my twins, or holding my babies after their birth and bonding. It wasn’t until four months later, when another NICU mom told me, “It’s OK to grieve the things you didn’t get to have and be thankful at the same time,” that I began to heal. I needed to hear that. I needed to know my feelings were OK. I needed to know that grieving and feeling traumatized were normal.

I was so lucky my pediatrician took the time to care. Because of her, I tackled my trauma early on by talking to my health care provider and getting the resources I needed to be the best mom I could be. Because of her, I enjoyed my twins and have enjoyed every second of their life. My twins are now 18-months-old. There are days I feel completely healed, and there are days that trigger my trauma. It is something I will work on for the rest of my life.

As I started to heal, I started thinking about other mothers; the NICU moms whose journeys are longer, the NICU moms who bring their baby home on oxygen or other support devices, the moms who have the most dreaded experience of all — saying goodbye to their baby in the NICU. What if they are not at their mental best? What if they are feeling the burden and grieving their journey? What if they have no one talking to them or asking them how they are feeling? They need to know these feelings are normal. They need to know they are heard and they are seen. That is why I am passionate about bringing more awareness to very real mental stress NICU moms face.

Being a mom is tough in itself. Coupled with the NICU journey and a baby’s critical needs, it’s even tougher.

Today, May 1, marks World Maternal Mental Health Awareness Day. If you’re a mother who has faced stress with pregnancy, childbirth, a NICU stay, or other critical illness, I want you to take time for you today. I want you to know the feelings you’re feeling today are normal. I want you to talk to someone and vocalize how you’re feeling. If you are the friend or family member of this person, I ask you to reach out. Ask them, “How are you doing?” And when they greet you with the traditional answer of “I am fine,” I want you to ask — “No, are you really OK?”

Photo credit: Oleksandra Ihnatieva/Getty Images

Originally published: May 1, 2019
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