NICU Parents: A Secret Society?

I remember the first time I walked into the NICU. When I was approved to go, my husband walked with me, showed me the hand sanitizer, and instructed me about the various policies about cleanliness. We walked in to find our tiny babies, who were on opposite sides of the full unit. Fluorescent lights glared onto the nurses, parents and their tiny charges, highlighting the dark circles under the parents' eyes and reflecting off of the plastic isolette that housed each baby.

It felt as if a sense of dread filled the room, which was full of the sound of beeping alarms. I saw the red and green lights indicating each of my sons' vital signs, the equipment that was attached to all of the tubes and wires in their bodies thrumming loudly beside them.  I pressed my hands against the plastic of their cribs, afraid to touch my own babies and, at the same time, aching to reassure them that I was there.

The overwhelming sensory stimulation that surrounded me was jarring, and soon enough would become absorbed as unnoticeable in my daily reality. I looked at the people around me, my new community, and swore that I saw others who, like me, had tears welling in their eyes, reflecting the lights that would never dim.

For all of us, this environment would be our babys' home for days, weeks, and sometimes months. This was the NICU. 

Prior to going into preterm labor, I had never even considered that prematurity was a risk. I knew that having twins was a risk factor, but I knew no preemie parents, and had heard no stories of preemies. I hadn't known anyone who had had an especially traumatic birth or a medically complex baby. I had no idea. The night after I gave birth, I researched premature birth to the best of my ability, and found out that one in every eight babies born in the US is born prematurely. I discovered the March of Dimes, and read stories about these tiny warriors and their families. I realized that we were not alone.

The parent lounge in our NICU was sort of a ghost town; not that it was empty, but that oftentimes we silently walked past each other, each quietly dealing with the daily medical ups and downs of our babies on our own. Although we all knew that each one of us was contending with perhaps the biggest struggles we would ever face, there wasn't much regular communication. When times were tough, and perhaps we most needed support from parents going through something similar, paradoxically, the last thing most of us wanted to do was to leave our babies alone in the NICU so we could talk with others. What felt like the invisibility of our circumstances made everything that much harder to shoulder, and our inner emotional experiences of the trauma seemed all the more "abnormal". 

Many parents describe the NICU as a kind of "secret society": a world that, prior to their own experience, was mostly invisible to them. As their babies stabilize or are discharged from the hospital and parents start to reach out to others that have gone through similar circumstances, they find themselves appreciating even the smallest of milestones, or suffering some of the greatest setbacks with a community that has a strong and compassionate understanding of what each other is going through. Unfortunately, due to the traumatic circumstances of having a baby in the hospital, in addition to the added isolation of quarantine after discharge, it can be challenging for NICU parents to have a chance to connect with one another.

What was your experience of other families in the NICU? Have you made connections with others in the preemie parent community since your baby's stay in the NICU? Are there any ways in which preemie parents can become more "visible" to the world around us, and if so, what is it that we need to say? I also get curious as to whether fathers are even more isolated by the NICU experience than mothers, and if there are any ways for fathers who have gone through this to more effectively find/construct their community?

Animals grieve too.

I was recently struck by a post in the New Yorker: an interview between the neurologist Oliver Sacks and Temple Grandin, a professor of animal science and animal behaviorist (who is also autistic). Grandin, at one point in the interview, describes for Sacks why the cows at a particular farm are "bellowing"; she deduces that it's because the mother cows were separated from their calves that morning:

"'They must have separated the calves from the cows this morning,' Temple said. 'That's one sad, unhappy, upset cow. She wants her baby. Bellowing for it, hunting for it. She'll forget for a while, then start again. It's like grieving, mourning-- not much written about it. People don't like to allow them thoughts or feelings.'"

As a NICU mom, the image in my mind of a mother feeling bereft in being separated from their baby couldn't help but drum up images of the morning I was discharged from the hospital, leaving my tiny boys behind. The grief of the NICU is tangible for parents, even when you haven't lost your child. Loss is loss (I wrote an article about NICU grief for Hand to Hold that you can read here). Grief is real. And unfortunately, our culture doesn't have a lot of practices within it to guide us through the pain. Perhaps even more striking is that in the recently released DSM V, the definition of "normative" grief has been relegated to a mere two weeks, suggesting that anyone who feels their loss for longer than two weeks to cope with the additional notion and stigma that they are clinically "depressed", in need of medication, or "different" from the "healthy" individuals who were able to "get over" their loss in a more timely manner. They even developed a clever title for it: Prolonged Grief Disorder (as if the bereaved or those coping with loss didn't have enough to shoulder-- now their grief is considered "disordered"). 

Anthropologist Barbara J. King described the mourning practices in animals of different species in a 2013 Scientific American article titled "When Animals Mourn" (she also published a book on the subject). It seems since Grandin made her statement about the lack of research into animal mourning practices, more scientists have looked into it.

In a culture saturated with behavioral theories about why and how people feel, oftentimes based on over-simplified notions of the way our brains work, it's only recently that we've started to realize the importance of the limbic, emotional system of the brain not only in our own functioning, but in that of the vertebrates around us. King theorized that perhaps the function of mourning is intrinsically tied to the amount of love and attachment we felt for the individual or (in the case of NICU parents) the ideas about or hopes for the future that we lost. "What is adaptive, then, may not be grief itself but instead the strong positive emotions experienced before grief comes into the picture, shared between two or more living animals whose level of cooperation in nurturing or resource-acquisition tasks is enhanced by these feelings," she wrote, suggesting that perhaps love, happiness and attachment benefit our survival so enormously that it's important to grieve in order to move forward, to acknowledge the importance of what was lost, and to thrive.  

Why is it important to know that animals grieve too? 

Because in the face of a world that sometimes pathologizes grief, it's important to know, and to embrace, the idea that grief is a normative experience. Instead of being silenced in our grief, it's important for us to speak to it, and to connect with others who may be going through similar pain. It's important for us to overturn the idea that experiencing crisis and coping with it does not make us "mentally ill" or different from others, but rather opens our world to an experience that is incredibly difficult and challenging to navigate. In Western Culture, many of the historic rituals around death have been deconstructed or done away with, perhaps with the hope of keeping the fear of death, loss or grief at bay. With the knowledge that we as a species aren't alone in our grief, maybe we can reconstruct ways of talking about, honoring and integrating our grief, accepting it on a level that doesn't make it taboo, but rather, creates the possibility through which experienced individuals may be able to provide guidance for people just beginning their journey through loss. 

The Silent Struggle: Mental Health and the NICU

In becoming parents, we oftentimes accept the silent assumptions that are made by our culture of what that's supposed to look like. An "ideal" parent, for example, seems to live in a blissful state of sacrifice, made happy by the sheer existence of their child, doing their best to take on their responsibilities according to whatever parenting technique may be in vogue at the time (see the book "Our Babies, Ourselves: How Biology and Culture Shape the Way We Parent" for some great writing on this subject).

Cracks in our ability to do that, made visible in mixed company or in the necessary public outings we sometimes have to make, can be harshly judged by strangers and other parents alike, as if our take on parenting is expected to be at top notch regardless of our surroundings or the context. Paradoxically, depending on your audience, different values will be upheld, and surprisingly, people oftentimes feel little need to censor their comments

The NICU parent, by virtue of their baby's traumatic entrance to the world, has a unique set of expectations placed upon them, in addition to a unique set of stresses. I remember when my son had terrible colic symptoms after discharge, which caused him to cry for numerous hours a day every day for months, of feeling like I wasn't grateful enough to have him home, that I was taking his health for granted, that I shouldn't feel depressed or anxious because, after all, he was out of the NICU. What else could possibly be as serious as that?  The depression, the haunting memories of the NICU that often flared up over the course of his entire first year-- how could I let those things overshadow the fact that he survived, that he was with me, that at any moment I could hug him? The fact that we were on quarantine to prevent infection, keeping us away from any kind of meetup groups or any kind of regular support from other parents didn't help matters much.  The guilt and shame that had accompanied his NICU stay carried on throughout his first year, in the form of my own expectation for myself that I should be happy and grateful, that struggles with emotional challenges were selfish or pointless. 

The NICU parent has to contend with the very real effects of trauma long after the discharge paperwork for their baby is signed. It's suspected that a staggering number, between 21-23%, of NICU parents have symptoms of PTSD. It's been found that amongst NICU dads, late-onset PTSD is common, cropping up sometimes as long as 6 months after the baby is home from the hospital (as a result, PTSD amongst NICU dads is underreported and difficult to measure). For moms and dads, untreated emotional trauma can wreak havoc on their ability to connect with their child or with each other well into the first few years of their child's life, and sometimes beyond. The very harsh experience of witnessing your child fight for their life can have profound influence on one's emotional health, and too often, no space is made for parents to grieve the experience, to put a name to what they lost, and to integrate that into their lives. Compounding that experience is the fact that NICU parents also have to deal with the very real threat that their child may have disabilities or health issues related to their prematurity or the medical issues that led to their NICU stay. 

As such, the NICU parent is not only held up to the expectation to be blissfully happy with their circumstances (sometimes, as it was in my case, by themselves), but they're contending with very serious, very real issues due to the fact that they were faced with an unpredictable, challenging, and in some ways emotionally devastating circumstance. With an implicit cultural assumption that parenting should be a joyous thing, too often we are silenced, and prevented from speaking to the struggles we may be contending with privately, afraid of the dark shadow that something like "mental health" might cast over our experiences. 

In resisting this silence, it becomes evident how powerful it can be for NICU parents (and parents in general!) to speak to the struggles they've had in parenting after discharge, to give a voice for others who may be too frightened to express it. In honor of Mental Health Awareness week, I'd like to make this a safe space to share your struggles as a parent, where you've gotten to with it, and if there has been any thing that's given you reprieve. Have you connected with other parents yet? How have you healed from your NICU experience? How would you like to see things change for others struggling with the same thing? 

 

Making Memories During Difficult Times: Remembering as a Way of Coping in the NICU

During the first few days of my sons' lives, I was so sad, so overwhelmed, my life so upended and my anxiety level so high, I didn't want to remember it. I remember distinctly thinking, "I don't want to remember any of this at all". At the time my logic was, "why would I want to remember seeing my boys in pain, hooked up to monitors and fighting for their lives? Why would I want to remember what it feels like during what seems to be the worst days of my life?"

Phone photo of Elliott on the ventilator.

Phone photo of Elliott on the ventilator.

It wasn't until after we got home from the NICU and I made connections with other NICU parents that I realized this was a somewhat common experience, however guilty and shameful it made me feel while we were still in the hospital. Even if parents didn't necessarily feel they didn't want to remember the experiences at hand, many are so overwhelmed by the sudden changes in their lives that they don't have the presence of mind to even think of things like taking photos.

What saved me from having a huge gap in my visually-documented memory were a few experienced, emotionally intelligent nurses who made sure that plenty of photos were taken, even when William's health failed, and who further encouraged us throughout Elliott's stay to document all of his little milestones, as painful as they might have been for us. Because of these incredible individuals, our family has pictures of the good and the bad, the horrific and the beautiful, and of each difficult step forward that we took together, and some of the steps backward.

The NICU can be stunning in its complete takeover of what most parents once thought would be a predictable, beautiful experience: the birth of their baby. The first milestones you witness in the NICU are often those that are in their own ways tragic, if only because they are necessary. Getting off of the oscillating vent, being allowed to hold your baby, nippling, being big enough to wear clothing, transitioning from the isolette. These things are very different than what most of us imagined would be the first milestones; things like smiling, reaching for toys, rolling over, milestones that will likely be many months away for a baby who still has weeks before his/her actual due date or who is struggling with medical issues that prevent them from being able to focus on those actions.

Current trauma research shows that in the healing of trauma, it is important for a person to have an integrated, autobiographical understanding of just what happened. In fact, it's common in all kinds of trauma for individuals to have a response similar to what mine was initially: to want to forget, to deliberately disengage from the experiences at hand, to "shut-down" so to speak. However, research is showing that it's just the opposite that will help us to process trauma in a meaningful way. In thinking about this, I realized that creating a coherent, autobiographical understanding of the NICU had another benefit: helping me to someday explain to Elliott what his first few weeks and months were like, the people that loved him, and to show him the images of his beautiful brother.

Here are a few tips for those new to the NICU, who may be struggling with the exhaustion and stress that the experience brings:

1. Take pictures, a lot of them. As hard as it is to see your baby hooked up to wires, bili lights, monitors, and in an isolette, some day, most or all of these things will be a remnant of the past. This post from Hand To Hold is a wonderful tutorial about artful ways to take photos in the NICU, written by a professional photographer and preemie mom. Even in a circumstance where you may be coping with loss (as we did), take as many photos as you can with your baby. As heartrending as it may be in the moment, some day the photos you take will become precious.

2. Get a lovey for your baby to do size comparison pictures each month. Some NICUs provide babies with loveys, or small stuffed animals to comfort them. Taking a picture to document your baby's growth each month will astound you due to what appears to be astronomical growth (and ultimately for micropreemies, really is!). This is an incredible way to watch your baby grow at their own pace, independently of any charts, and to see how far they've come. It's also a great practice to continue after your baby's discharge from the hospital and through the first year.

This small poster from EverytinyThing has space on its balloons for each member of your baby's care team to write their name.

This small poster from EverytinyThing has space on its balloons for each member of your baby's care team to write their name.

3.  Take pictures with your baby's primary nurses, doctors and therapists. Get one of the fantastic products over at EverytinyThing so that your baby's team can write their name on your "My NICU Family" print. The people you see every day at the NICU may seem like they are unforgettable, but years later it can be difficult to remember each of your baby's caregivers and put a name to the individuals that had such a profound daily impact on your family's lives. The isolette decorations that Trish sells can also brighten up your baby's isolette and make the space less daunting.

4. Keep a journal. Journaling not only documents each of the things that happen in your day to day NICU life, but it can also serve the important purpose of making you feel better. Journals can help you express and process your emotional response to different circumstances, if simply by providing a space for you to "get it out". I'd like to emphasize that it's important for dads to write about their experience as well. Again, journals not only serve the purpose of providing a distinct memory of the experience for parents, but can also be something of value in telling the NICU story to your baby when they get older, or in sharing with friends and family about what happened. Personally, in revisiting my journal from my babies' NICU stays, I realize just how strong we actually were, and how easy it is to forget what a struggle it once was.

5.  When in doubt, ask your primary nurses for suggestions. Through their experience, nurses have a good sense of the types of things a family can do to generate memories during difficult times. One thing our nurses did for us was take prints of both of our boys' feet and hands (there are some creative ways of doing this that are worth checking out as well!). They also took pictures or wrote notes each time Elliott had a milestone when we weren't there (I still have the note a nurse wrote when he completed his car seat test in the middle of the night!). Additionally, collaborate with your nurses about the things you'd like to have done in a specific way (for example, the first outfit you'd like your baby to wear and letting the nurses know you would like to be there for it).

Many of the practices I took up in the NICU in order to create memories of the circumstance have ended up becoming valuable to me in life after the NICU, particularly journaling. Even though some of these practices may be difficult to fathom in a challenging moment, or may feel unnatural just due to the fact that you've never done them before, have faith that many of them will prove their worth and hold their worth long after your baby's NICU stay is over.

Stay tuned~ a giveaway of EverytinyThing's "My NICU Family" print is coming to NICU Healing's Facebook page soon! Follow our Facebook page to receive updates! 

 

Investigating the Practices of Trauma

In a moment of crisis, the human mind (and body) manifests ways of coping that optimize our chances of survival. In fact, crisis, or trauma, oftentimes prompts our brain circuitry to circumvent the typical ways in which it operates so that we respond quickly and efficiently, leaving much of the process invisible to the conscious mind. Due to its invisibility, the brain's response to trauma leaves a lot of mystery for researchers to unravel; it can be even more difficult to navigate for an individual trying to heal from a traumatic experience. How is it then, that someone can deduce whether the trauma they've experienced has had an impact that's more than what might be considered "typical", or determine whether they might need more help? 

It's sometimes useful to examine "mental health" issues outside of the traditional context assigned them by the world of mainstream psychology. Instead of imagining that trauma, depression, or crisis are a part of you, or that they've somehow become a part of your personality, try to tease out the practices and effects of these notions. In conducting such an investigation, you may be able to find what does and doesn't work for you or your family, and determine whether these practices or effects have become so significant that it might be useful to integrate the help of a professional. 

What does the trauma have you doing? Do you have practices or beliefs specific to trauma that are active in your life? What do they look like? For example, one thing my trauma had me doing was researching, frantically, trying to figure out the various signs and signals that I thought might indicate there was something "wrong" with my son for the entire first year he was home. One sign or another would have me feeling paranoid, anxious, staying up at night, and at the same time paralyzed by fear. When our pediatrician, the specialists at our followup clinic, and various members of our family told me that there was nothing to worry about, it fell upon deaf ears. Upon examination, I realized that I had developed this practice when Elliott was still in the NICU, when it actually served a purpose: at that point, noticing discrete signs or signals that he might have difficulty with something or need more help in some arena gave me the ability to ask for guidance from the various medical professionals helping him on a daily basis. Panicking about things when he was an older baby, on the other hand, didn't serve much of a purpose except to manifest difficulty in feeling attachment with him, promote exhaustion, and create anxiety that tainted anything we did with a level of unease that didn't feel right.

The practices of trauma are wide and varied, and can range from things like not being able to sleep at night due to perseverative thoughts or fears, drinking to escape memories of the events that occurred, unrelenting fear that a similar event will occur again, or the inability to imagine a life without these fears. Some effects of trauma are more difficult to put your finger on, as they are physiological. They can include things like cold sweats, unpredictable crying or outbursts of anger, or simply feeling "outside of yourself" when in an environment that triggers memories of the crisis. Other practices of trauma may not be quite so harmful, and are just as useful to notice. These practices can include things like noticing milestones unique to your NICU baby, letting go of the unrealistic expectations society has of parents, accepting the unpredictability of the day-to-day by practicing mindfulness, or reaching out to help others going through a similar circumstance. 

What promotes these practices? It can help to look at the various individuals, belief systems or values in your community that encourage the practices/effects of trauma you see active in your life, both the good and the bad. How do these individuals or institutions promote it?

To go back to the personal example I gave above, I realized that I had a deeply ingrained notion of what I now like to refer to as "the milestone police" (thank you for the terminology, online NICU support community!). Based on the books that I had read, I had unconsciously developed a very strong and particular sense of what I thought child development should look like. Because I held that notion much higher than my own intuition, I fell into a feedback loop in which everything seemed like it was somehow wrong. This was compounded by the fact that for 88 days while Elliott was in the NICU, I had to become accustomed to the fact that every day, something could very well go wrong, very easily and very quickly. In order to survive the circumstance, I had to get used to expecting the unexpected. Learning to let go of those shoulds and those fears, regardless of Elliott's outcome, gave me the ability to at least be present in the moment with him, and to focus on the things that I could do that were useful as opposed to exhausting (keep in mind, this is not to say that if you have a sense that something is awry with your baby that you should not reach out to your pediatrician or a specialist-- this example is an example, and not meant to be thought of as a replacement for medical or psychological advice).

Other examples of cultural constructs that promote the effects of trauma could be things like the isolation of going through a circumstance that no one in your community has ever spoken of or, potentially, experienced, which then can make your fears feel all the more horrifying to face. It can be "Dr. Google", or the practice of googling things and finding terrifying information that can send you into a tailspin of anxiety. It can be your family's support in your creation of a NICU journal or their curiosity about hearing your story, that encourages your ability to speak up about what you've been through and integrate it into your family's biography. 

If you carefully examine the practices in which you participate, you will oftentimes find that people or belief systems play a role in their existence. It helps to know what those are, and to cultivate the positive influences, and minimize, or at least acknowledge, the negative to the best of your ability. 

Are these practices of trauma ok with you? Take a look at the various practices/effects that you've found operating in your life and do a brief analysis. Are these things working for you? Are they working for your family? Your partnership?

As I mentioned above, sometimes the practices of trauma serve an important purpose at one point in your life (e.g. the NICU), but later, take away from your experience of things or prevent you from enjoying life in the way you want. Do you feel empowered to change these practices on your own, or could you use the assistance of another person in moving forward?

It can sometimes be very difficult to articulate the practices and effects of trauma, in which case it can help to have assistance in identifying what's happening and figuring out how to go on. Sometimes, the practices, effects or beliefs that you've developed can be so vast or overshadowing that it feels impossible to change them on your own, in which case, it may be useful to find an ally. On the other hand, sometimes a deep examination of the circumstances can empower you to find a path that works for you and your family on your own. Either way, making a space to examine the effects and practices that a crisis may have inspired in your life is a powerful start in moving towards healing.

 

For further reading: