A mother’s story: My experience with NICU-PTSD
Founder of Katertots and mother of two, Katherine Kennedy Allen, shares her experience with NICU-PTSD.
This time last year seems to be a blur of a nightmare. As I hit my second trimester of pregnancy with my second daughter, we celebrated my older daughter’s first birthday. That same week we were told to brace ourselves for a late-stage miscarriage. The weeks that followed of doctor’s appointments, buying a new house in the new town we had moved to just a few months before, and counting day-by-day as we got closer to viability seemed like a paradoxical mix between a beautiful dream coming true and my worst nightmare. Emotions rang high as I was admitted to the hospital on bedrest for 5-weeks, taking our baby girl into her third trimester. Then, a little blood, pain and some tears later, she joined us at just 29-weeks and the real rollercoaster ensued as we endured her 63 days NICU stay, once again keeping our family walking on egg shells.
Bringing my 29-weeker, Emerson Claire, home to be with her sister Grace, father and I was the greatest moment of joy and relief I have ever been blessed to experience. Unfortunately, the weeks that followed that joyous milestone also encompassed the uncanny feelings of doubt, resentment and indescribable despair that I wasn’t prepared to handle. I got my happy ending, why was I suffering from a cycle of guilt, anxiety and overall uneasiness – and where could I find help?
Diagnosed as NICU-PTSD, I was dumbfounded by the description. “PTSD is classified as an anxiety disorder, and it is characterized by a collection of persistent, debilitating physical and emotional reactions to traumatic, scary or life-threatening experiences”.
Why, in our 4 months of living at the hospital, hadn’t anyone warned me about this? I wasn’t depressed – these feelings were something different, and I needed help.
Emery had been home with us for about 6-weeks when I was filling out her 4 month milestone questionnaire from the pediatrician. Question after question I checked the “no” mark with a sigh, acknowledging that she would always be behind on those silly milestone markers. Still, a feeling of anxiety washed over me. Each question represented a failure to me – not of my beautiful cooing daughter – but of me, and my body. Why couldn’t I stay pregnant longer? Between the “Incompetent Cervix” and “Placental abruption” – what exactly happened? I loathed the skin I was in – every time I looked in the mirror, my body represented failure and my head wouldn’t quiet, constantly reminding me that she was home and healthy and that I needed to get over it. Bringing up the anguish and anxiety with others didn’t help, they too would just encourage me to get over the pity party and focus on my blessings. Dismissing any mention of despair.
At Emery’s 4 month check up, Dr. D brought up that I had noted I was occasionally feeling blue. I asked if it was perhaps postpartum depression, which seemed to be the hot topic on everything from US Weekly covers to “Girls”. Quickly she dismissed me, “No, not PPD, obviously it’s post-NICU PTSD. Hang in there.” I felt like a silly child, unable to ask the right questions (So what do I do? Who do I talk to?) before she ran off to the next patient giving me a nice pat on the back.
The day of Emerson’s birth had been a blur. I was in the hospital alone and had a feeling wash over me that she was coming. It was a Sunday and we had turned 29-weeks that day. By 5am I had texted my husband to wake up, shower, eat breakfast, pack a bag and get to the hospital. An uneventful labor, she entered the world purple and limp, like an uncooked pork tenderloin. I only got to see her from across the room as she was intubated, surrounded by machines and specialists I’ll never know the names of but were all there to keep her alive.
My husband went with them to the NICU and took a few photos, texting them to friends and family. Everyone saw my baby before I did as my phone was in his pocket. I sat there wondering what was next, no one came by to tell me if she was alive or what was going on.
When doctors, nurses and family finally did come by, each asked for her name. I didn’t have one picked, but I remembered reading that Emerson/Emery meant brave and the first time I saw her laying in her isolette with tubes and wires obscuring every inch of her body and face, it was with anguish I sat unable to hold her. Naming her “Emerson” was my way of instilling bravery in this tiny little creature who I fell in love with at first sight. I named her, and 14 hours after giving birth, I convinced the hospital to discharge me and finally let me go home… without my baby in my arms.
After a 63-day rollercoaster NICU stay, we were able to have our family of four all under one roof. Aside from one re-admission for RSV, she has done incredibly well – she is happy, healthy and progressing – the only emotions our family should feel are joy and gratitude for all of the obstacles our brave little one has overcome.
A few months after she was discharged, I had been asked to join the Family Advisory Board for our hospital’s NICU. Eagerly, I attended the meeting – grateful for an opportunity to give back to a hospital, staff, and community that had given us so much with the healthy delivery of our baby girl. There were 5 other NICU-grad moms in attendance, and in discussing plans for the expansion of the NICU and addition of a more welcoming “Family Center” – someone brought up how no one had ever told her that when she left, she may face PTSD. The volume of the conversation grew excitedly as we each shared our story, finally finding a group that understood the twisted emotion of a NICU homecoming. They understood… that even when the world is telling you you’re supposed to be happy, maybe you’re just now you are reflecting on the experience of so many emotional and physical ups and downs. We had endured four months of adrenaline getting to the hospital every 3 hours, waking at 4 a.m. Only now could I process the experience.
So PTSD, really? Post Traumatic Stress Disorder? I had always assumed PTSD was reserved for the heroes who served our country on the battlefields abroad, not some mother living in upper class suburbia with her beautiful, healthy family of four and little dog. And that is when it cycles. I’m blessed, so why am I anxious?
I have come to realize that not only was I suffering from PTSD as I processed the past few months, but that I then felt guilty for acknowledging the pity party and even guiltier that my clinically diagnosed “potential late stage miscarriage” survived and thrived while so many friends haven’t been so fortunate – and then cycled into feeling guilty for feeling guilty. What? Why us? Anxiety overcame my entire being placing blame on myself even though I had done everything in my power to stay pregnant and was fortunate that it worked just long enough.
The triggers would be anything: hearing of a friend’s miscarriage, seeing beautiful newborn photos on facebook where the baby was resting on the mother’s chest, receiving an overwhelming sea of hospital bills, baby shower invitations (I’ve never had one), the physical therapy and doctor’s appointments each week, or even just the silence. The crafts and decor I so proudly hung in my hospital room got buried deep in my parent’s basement as they would only make me cry. The teeny tiny preemie clothes she finally was able to wear at about 6-weeks old, I sent off to friends with little sweethearts. I just couldn’t see them without a cascade of anxiety and guilt. I wondered how long this would last. I searched the web for help, nothing really there. I asked Doctors for advice. Even the Stanford High Risk Clinic had no answers for me, they told me to look for and find a therapist covered by my insurance – there was no one specialized in NICU PTSD. So I just got through each day on my own and confronted the dark patches as they came.
But then I turned a corner. They say time heals all things, and perhaps that is it. It has been over a year since I was first hospitalized, Emerson is now just over one. Proactive by nature, recently I pushed myself to get more involved in the NICU Advisory Board where I was inspired to be a resource for other NICU Families facing their own, unique journey. I launched a little social impact project selling hairbows at ShopKatertots.com like those my daughters wear, and giving 100% of the proceeds to support fellow NICU moms and dads with childcare and meal delivery. I was able to turn the grey cloud hanging over me into light at the end of the tunnel and even warn other parents of this crazy NICU-PTSD that may come their way even if/when they get that happy ending to their story.
I am not sure this piece makes any sense. But neither does me having PTSD. I have a beautiful baby to hold and more blessings than I can count. They say a picture is worth 1,000 words, so here it is folks, this is a face of a mom recovering from PTSD.
To support NICU families, visit ShopKatertots.com.