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.

Attachment in the NICU; or Contending with Cuddlers

One of the more confusing yet heartbreaking moments I had when Elliott was in the hospital was when I walked in to see him when he was closer to term, in the PICU,  and just a week from coming home (although I didn't know it at the time);  he was being held and rocked by a hospital volunteer, a "cuddler". Emotionally I felt a burning inside, a proprietary feeling over my son, and the feeling that "I have yet another person I have to ask to hold my son?"

It was a moment I had to analyze later, after I'd gone home, because I felt conflicted about it. After all, how awful for me to get angry or sad because someone else was holding my baby. These volunteers were there out of the kindness of their own hearts, and made it so Elliott could be held even when I couldn't be there. That was a good thing, right? I wanted for him to experience human closeness; if he had been a term baby and able to go home right away I would have been holding him all the time, wearing him, giving him all kinds of physical affection. Wasn't a cuddler, holding Elliott when I couldn't be there, the best possible outcome considering the circumstances?

At that moment I realized the extraordinary sense of loss that I was feeling, that many NICU moms feel. Not only had I lost my third trimester, my sense of safety and predictability, and many of the hopes that I'd had in having babies, I was also losing my sense of feeling like Elliott's primary caregiver, like the person he felt most attached to in his world.

Of the many stresses facing parents when their child faces a NICU stay, the notion of attachment, or how you will become psychologically "attached" to your child, may be one of the greatest. It's difficult to imagine what your attachment with your baby will look like when they are inside of a plastic incubator, separated from you, and at times too tiny and medically fragile to hold. It can be devastating, particularly as a mother, to be discharged from the hospital with empty arms (and empty belly), with days, potentially weeks ahead of you, in which you will be separated from each other. Discharge from the hospital can be in and of itself a stressful event for parents, as it symbolizes a descent down the "tip of the iceberg"-- and into an unpredictable future in which your child will be hospitalized, and, in most cases, separated from you.

In the beginning of the NICU experience, it's challenging to cope with the idea that for the next days/weeks/months, you will most likely need to ask permission to hold your baby, you will require assistance and training to complete many tasks (even diaper-changing), you will need to make decisions regarding your baby's health without ever having had any experience with said issues.

All of these things can have the effect of making you feel almost as if your baby isn't yours, but rather a permanent ward of the hospital. It can also make you feel as though you don't play an important role in your child's care, especially when your child is especially medically fragile and reliant on various medical interventions to survive. As such, anger, grief and resentment can sometimes burst out in unpredictable ways, even towards people like Elliott's cuddler, who was giving and kind, but happened to symbolize a whole world of frustration that my baby wasn't home with me.

Parents have reported feeling angry, sad, afraid, anxious, and frustrated, amongst other things. There are many effects that all of this can have on the psychology of parents, but the underlying issue is that having a baby in the NICU feels very different than having a  take-home baby for whom you provide all care, and requires an adjustment of your perception and beliefs. Luckily, finding resources and support can help you articulate the grief you might be feeling, and promote moving forward without that resentment.

We had a few moments in the NICU, and many more after discharge, where I realized that my attachment with Elliott likely wouldn't be damaged by his NICU stay and separation from his parents for three months. The theory behind attachment is that it's somewhat like a dance, and the patterns that you develop in a partnership are important to nurture and repeat over time. The loss of that initial caretaking/parenting experience, in other words, doesn't mean that it will never happen when your baby has to have a NICU stay. But I sure as heck wouldn't have told myself that fact the day I walked in to find my son in yet another (sweet and caring) person's arms at the hospital and was ready to pull my own hair out.

I'm wondering if this resonates with other readers... Did you, in your experience, ever have a circumstance in which you became angry or resentful with someone that in your "logical" mind you were incredibly grateful or happy to have around? Did the NICU experience force you to feel less attached to your baby (at least for the time period in which they were hospitalized)?

Two Years Old!

Elliott is two years old today! I can't help but want to shout to the world how amazing it is that my son-- my son whose whole world was put on an unexpected and unpredictable course that made no promises regarding his survival, health or future functioning-- my beautiful son is two years old, doing incredibly well and he is taking the world by storm.

I only wish I could have visited myself in a dream two years ago to tell my two years ago self that things would be okay. Not what I expected, but okay. I wish I could have given my husband and I a break from the anxiety and, at times, terror we experienced, and endowed us with some kind of faith that someday the experiences we were having would be memories; that life wouldn't always look the way it did back then. 

Preemie parents have a unique perspective of these kinds of milestones, since during the first part of their child or children's life everything seems precarious, like it could all be taken away. It makes it that much more powerful to witness your child laugh for the first time, celebrate their first birthday, take their first steps, utter their first words, even getting over their first cold when you have seen them in an incubator hooked up to wires and tubing and so tiny they can fit in the palm of your hand.

These milestones also oftentimes bring up ambivalent feelings; the memories of my birth experience and of the first few days' of my sons' lives, the loss of William a week afterward, the pain in remembering the loss of my third trimester and having to see my babies in an unnatural space instead of feeling them in my belly, the memory of them struggling to survive because they lost that time inside, the memory of the self-blame and alienation I felt from almost everyone I'd ever known. 

It's hard to hold all of those feelings at once; Elliott and William's first birthday was challenging for me because of the storm of emotions that were clouding my head. It took a long time for me to develop a sense of peace, an ability to surrender to the unknown and to trust that things would be ok even if they aren't what I expected, to understand that I could survive even in the face of immense change. 

Today was one of the first celebratory days that I could genuinely celebrate, and to see my beautiful boy playing with his new toys with a huge smile on his face without having lingering memories of trauma pulling me away from the present moment, that made it one of the best days of my life. 

How have milestones like the birthday of your baby worked out in your family? Have you found yourself able to feel genuinely happy, or is there an element of feeling bittersweet regarding it?