Is Growth Possible after Trauma?

My new post at Preemie Babies 101 went up today; it talks about the sometimes unexpected changes that can occur after having gone through NICU trauma. Check it out: 

"...After the NICU, as we assessed what still stood around us, what hadn’t changed dramatically or crumbled in our lives, I wondered how the experience would affect my story, our story, the story of our family. Did this trauma mean that we would become a sad story? Our lives a tragedy? Would our lives forever be shifted into the shadow of grief?

The answer, unexpectedly, was no."

To read more, click here. 

Coping with the "Zen" of the NICU: A Breathing Exercise

Being in the NICU is a swift baptism into a world in which nothing is predictable. My feeling was that once we were used to one circumstance, when the words started to make sense or we felt stable, as soon as we started to feel that sweet pang of familiarity, it quickly vanished into the NICU mire and another difficult circumstance would present itself.

My least favorite phrase of all-time, "it's a rollercoaster" felt like some kind of a sick mockery of the groundless world we had suddenly found ourselves floating in. The first time I heard that phrase was the morning after my son Elliott had had a pulmonary hemorrhage and had to be ventilated. His brother William was found to have a grade four bilateral brain bleed and severe infection, and it was related to us that "the 'honeymoon period' [was] over." Welcome to the NICU.

View image | gettyimages.com

However apt the rollercoaster analogy, it's incredibly difficult to become accustomed to the monumental shifts and surprises, both bad and good, that happen on a fleeting and frequent basis in the NICU. After some time living in that unpredictable world, I realized that the momentary nature of it, the way that it forces one to be "present" and mindful of each breath that you or your little one(s) take in, has this zen-like quality to it. After all, when your baby is in the NICU you can't allow yourself to think one day ahead, even three hours ahead, without making the mistake of creating a false security that can be shattered with one bad blood draw, one bradycardia event, one bad test result. This ability to be "present in the moment", or mindful, is considered something to strive for in Buddhist meditation and mindfulness theory. The challenge is that it is very difficult to stay present emotionally, especially in easier times, when it's simple to distract your mind with the entertainment and interest of day to day life. The NICU, for what it is worth, oftentimes forces the ability to be present in the moment upon its patients and their parents.  

“...the human experience is an experience of nothing to hang on to, nothing that’s set once and for all. Reality is always falling apart. In this fleeting situation, the only thing that makes sense is for us to reach out to one another.”

— Pema Chodron, "Living Beautifully: with Uncertainty and Change"

One author whose work spoke to me whilst our family was in the NICU was Pema Chodron, a Buddhist nun whose books about coping with suffering proved to be incredibly useful in living through the experience. Her books "When Things Fall Apart" and "Living Beautifully: with Uncertainty and Change" speak to the notion of losing your grounding in the world, and how in losing that, one can find incredible strength in learning how to face your fears, embrace the unpredictable nature of the world around you, grow spiritually, and find commonality with others that face the pain in their lives. In "Living Beautifully..." she wrote, "...the human experience is an experience of nothing to hang on to, nothing that's set once and for all. Reality is always falling apart. In this fleeting situation, the only thing that makes sense is for us to reach out to one another."

View image | gettyimages.com

Here is a simple breathing exercise/meditation that can help promote calmness, even in difficult times. It is designed to help you learn how to ground yourself, even in times of intense stress. The practice can be useful for NICU parents facing the stress of the hospital, but can also be implemented by anyone facing a traumatic circumstance who feels the need for grounding or feels overwhelmed by their anxiety or suffering. I used to love doing it while I held Elliott skin-to-skin in the hospital, and got so used to the practice that I implemented it at home long after he was discharged. At this point I consider it a tool that I have in facing any kind of stress, and use it whenever I feel a sense of anxiety or overwhelm.

Note: Before beginning, check-in with yourself that you're able to safely do a breathing exercise. Be mindful of how you are feeling, especially towards yourself. It's important to approach a stance of forgiveness and self-love in participating in this exercise. If at any point during this breathing exercise you feel triggered or overwhelmed, stop immediately and take notice of the things around you. Call a nurse, your partner, a family member or a friend and tell them how you are feeling. 

• Sit comfortably, with both feet on the ground and your back against a supportive chair. Close your eyes. Allow your arms to relax. Allow your body to relax. Become aware of your breath, how it feels. Breathe in to the count of six, and breathe out to the count of six. Count as slowly as you can, and breathe in as deeply as possible and out as slowly as possible. Feel your breath in your lungs, notice it. Relax into your breath.

• Once you have established a slow and steady breathing pattern, if you'd like, you can discontinue counting as you inhale/exhale. Notice your breath, how it feels in your body. If your mind starts to wander, come back to your breath and focus on it. Treat the thoughts that enter your mind as passing. If it's useful, you can name them as thoughts or feelings, notice them, let them pass, and return to concentrate on your breath. Connect with how you feel physically in this very moment. Be present with your breathing.

•  Continue in this manner for as long as you'd (reasonably) like to, but for at least 3-5 minutes. When you stop, notice how you feel. Are there any parts of your body that are particularly noticeable in this moment?  Were there any parts of your body that felt particularly stressed? Were there any thoughts dominating your ability to let go of thinking?

• As you accustom yourself to taking time for this meditation, try to delineate more time for it each day. If you'd like, you can even try doing it while holding your baby. As I said before, I think skin-to-skin contact is preferable just due to the closeness it provides, but it's ok if you hold them swaddled. Make sure that you have the ability to sit comfortably and safely hold your baby. Relax into your chair with them snuggled close to you, breathe in their beautiful scent, and find grounding/love/compassion, even in the groundlessness.

Breathing exercises, as simple as they may seem, have the profound ability to induce calmness and presence, even in the most difficult of circumstances. Although at first it may be challenging to let go of thoughts and stresses, with practice, breathing exercises can promote your ability to be present even in fearful times, can provide you with a sense of connection not only with your baby, but with other parents going through similar circumstances, and can make clear what it is that you can hold onto, even in times where it feels like there isn't anything, that you're floating far away from the shore.

For more relaxation techniques and exercises, check out this PDF from the Trauma Center, or go to their website for this and other resources in coping with trauma.

NICU Healing.

*Trigger warning: neonatal loss and preterm labor discussed*

I once lived a life in which absurdity was my mainstay of entertainment. Or maybe music? Anything in C-sharp minor. My job as a therapist with transitional youth. I thought as much as I could about everything I came into contact with. Mindless things as much as the more complex ones. I enjoyed disagreeing with people, having playful arguments. Changing my viewpoints. Changing my cities. Goofing around. Watching French New Wave movies. Wearing dramatic makeup or dressing up. Seeking out people and things that were "different" from what I already knew and relishing in the experience of discovering them.

My life changed forever, as cliché as it is to say, when the two lines quickly darkened on a pregnancy strip in early 2011. Negative thoughts rushed through my mind: I wasn’t ready. I didn’t know what to expect. I didn’t think I’d be a good enough mom. My relationship was too new. My job was too stressful. The world was too insane. And yet, warmly, I felt so lucky, so blissful, to feel something new inside of me; to know a new journey was beginning, and in a sense, to know my body was the captain. Honestly it was a mess, but a happy mess at that.

When they told us there were twins inside, I was stunned. So was John.

We hastened our marriage. We told everyone that would listen. We loved and we celebrated. We had to move. We had to plan. We worked and tried to save money. I tried to eat right and he cooked for me. We'd spend hours thinking about the future, imagined the boys' first words (maybe "Tix", based on one of our sweet dogs who would surely make an impact on them). We thought of names together, talked shop about how we might be as parents, what we hoped for, what we wanted. I slept for great stretches of time.

When we saw those baby boys laying against each other in my belly we swooned, and we were so happy. When we started to feel their small feet against the walls of my abdomen we freaked out and shuddered with excitement. My pets loved to sleep curled up against my gargantuan belly all night. It was as though everything we could imagine wanting together was inexplicably being given to us, and all at once. I felt the luckiest I had in my entire life.

At 26 weeks and three days, in the middle of the night I started to feel cramping. It was painful and I couldn’t sleep. I called my doctor, thinking I was overreacting but needing some sort of a solution so I could sleep. She told me I could either go to the emergency room or wait until the morning. I decided to wait.

An hour later I knew that wouldn’t be possible.  John and I drove to the hospital together, pale and scared.

Elliott at about 28 weeks' gestation, looking angry about his current situation.

I doubled over because the pain was so terrible, the hospital admitted us immediately. The doctors and nurses did what they could to try and stop what turned out to be active labor. What I had hoped would be a natural drug free birth became a labor desperately fraught with drugs of any kind that would stop what was impending by any means possible. For three days I laid in a hospital bed in excruciating pain, slowly dilating, terrified of what might be ahead of us, preferring to die in place of those tiny boys inside of me. I didn’t even know if they were viable. I didn’t know what the outcomes might look like; and I was in so much pain I couldn’t even entertain the notion of researching anything because I couldn't think straight. John, unable to have much of a voice in anything at all, tried to stay awake the entire time, tried to do what he could to remediate things, tried desperately to be as supportive as he knew how.

On the third day I was 10 cm dilated and they rushed me to delivery.

As they rolled me down the hallway I howled in fear, the animation of the hospital ceiling playing out before my nonfocusing eyes. Nurses tried to make eye contact. Doctors asked a million questions. Decisions were made. Lots of frantic, life-altering decisions. I cried. John cried. My mom cried. And then, William cried. Then Elliott too.

Each boy was two pounds and change. William approached three pounds, which they assured me was a fantastic size for their gestation, especially given that they were twins. Elliott was closer to the two pound mark and had been transverse (sideways), so they'd had to fish him out of me. They joked that he was trying to swim away from their hands. He had bruises on his legs from where they'd pulled him out (breech).

At midnight John took me to the NICU for the first time, where I saw my tiny charges sleeping in their see-through plastic boxes, wires spiderwebbing around them, machines humming loudly beside their beds. The NICU was loud and active for midnight on a Friday. I looked at their faces, seeing bits and pieces of John and I in their countenances, and still completely unsure of what lay ahead.

On Monday we were told that William's health had deteriorated vastly overnight. And things only got worse. We had to say goodbye to him on Bastille Day, July 14th, 2011, as we each cradled him in our arms. John and I reeled. Life as we had known it was gone. And in its place was a world that was as completely unpredictable as it was uncomfortable and terrifying. So we stayed by Elliott's side, we taught ourselves how to advocate for him, we stuck together, we cried frequently, and we hoped that someday the entire experience would be relegated to memory.

First family photo with Elliott (and first kangaroo care!).

88 days later, Elliott was discharged from the hospital. Healthy, fat-cheeked, and blissfully without medical equipment accompanying him. The doctors told us that even something as minor as the common cold could trigger another NICU stay for Elliott, potentially even lifelong medical issues. So we stayed in our own home, away from the rest of the world, left to ourselves to cope with this massive trauma we had just experienced. We barely survived it. It was only years later that things started to have a semblance to what life used to look like; that we could laugh at jokes or have casual conversations with friends about movies or that sort of thing. For the first two years of Elliott's life, it was as if something dire could be behind any corner, waiting to finally end us as a family, to take away what little joy it felt like we had left.

Towards the end of Elliott's NICU stay, and in my connections with other preemie moms online during our year on quarantine, one of the only valuable things I could find about our experience was the feeling that we were not alone. As isolating and lonely and terrifying as the experience was, we were amongst a community of people who by unfortunate and random events were forced to become as tough as nails for the love of their babies. I found that the people with whom I connected had very similar perspectives and values, a sense of what was really important that took precedence over being a gold medalist in the mom Olympics. I also found that many of those in this new community struggled with the very same things that John and I struggled with: marital troubles, anxiety, depression, lingering fears of what might happen to our surviving son and family, a sense of being lost and disconnected, without many tools to deduce exactly what had just happened to us. I saw that it was common for parents to become transformed by the experience, for the better or for the worse, that many people, like me, had become unrecognizable in contrast with their former selves.

Our robust, sweet rapscallion at three years old.

For almost two years, I ruminated over what had happened. I shut down my profiles on social networking sites. I used some of the tools I'd learned as a therapist to try and "work through" my understanding of our experience. I saw a counselor. John and I received counseling. I read whatever research I could get my hands on, as well as the beautiful autobiographical books of others who had gone through similar experiences. I sought out ways of healing/rebuilding that would give me the ability to make sense of this huge event, and to make it a part of my autobiography that both acknowledged the gravity of it all, but also made some meaning out of it. I realized that without that meaning, I may have literally gotten lost trying to move beyond the feeling of being paralyzed with fear.

Welcome to NICU Healing. It's my hope that this website will serve as a resource to other families going through the struggle of this experience, and that those who feel they need more help will feel solace under the care of a family therapist and coach who has a very deep understanding of what it means to have your world fall apart for some time, and can help guide you through putting it back together again.