On Jumping Off A Cliff With The Hopes That A Tiny Branch Might Save You [Pregnancy After Preemie].

My full term daughter was born on December 23, 2018 on a full moon. A cold moon. The cold full moon, and the first day of capricorn: the goat. She burst out with her robust cry weighing 8 pounds, and they put her on my chest so she could feel me and smell me. We laid there together for almost 30 minutes before I cut her umbilical cord.

Her name is Greta. She is very strong.

Her brother Elliott, a surviving twin who was born at 26 weeks, is now seven years old.

The surreal nature of my daughter’s birth was stunning— I laid there with this gigantic sweet baby whom I could touch and who was in the same room with me, and I couldn’t believe the sheer grace of the entire thing. That I could protect her eyes from the lights with my hands, that she could sense me, that she wasn’t immediately swifted away in an avalanche of terror, that there was no loss. I couldn’t stop crying. All emotions came overwhelmingly to the surface, and as someone who’s been called “stoic”, it was like being in a whirlpool.

Everything about her strength brought me back to the precariousness of her brothers’, William and Elliott’s, birth.

From the minute of the positive pregnancy test my body awakened to the dread of what could happen-- what could finally come again— what would probably do me in for once and for all— the loss of another baby. And each moment of the pregnancy felt like a conscious decision that I could be putting another baby into a dangerous situation for the fact that they were living inside of my body.

My body: the one that I still, deep down, blame/d for the death of my son William and for the prolonged hospitalization of Elliott. My angry and disorganized body. The body that could go haywire at 26 weeks and people could die from— that body. My friend Erika said she would make birth announcements that mentioned that nobody died; she got it. I just hoped I got that far.

So that’s the background.

There was this other half of me that had always longed for more babies despite my massive fears.

I found a doctor I trusted. We talked about the medical history. I pulled from my ancient knowledges to describe each medical intervention they used with my boys and tried to keep myself from describing my sons’ suffering as a result of the preterm labor. She said the Makena shot was a miracle. She said she’s seen a lot of success.

At 18 weeks, as we approached the danger zone, my high risk doctor joked that due to my advanced maternal age, previous preterm labor, and my (new and fun thing [kidding]) low-lying placenta, that we had our work cut out for us. I bit my lip trying not to worry, but spent the rest of the afternoon that day googling each condition, the likelihood of preterm labor associated with it, and crying.

I realized throughout the pregnancy that there was power in my body’s memory, and that I had pushed that part out of me— out of my conscious thought. I realized that my body remembered everything despite my desperate and elaborate attempts to eradicate it over the course of 7 years. And with the help of my partner and my doula, I tried to walk through the steps of acceptance that this was not the same, that it would not be the same, even if the darkest of fears felt as if it was omnipresent. When the labor hit and it was real, the emotions rushed to the surface again, even despite my knowing we were in the “safe zone” of being past 37 weeks. And by some grace, I was lucky enough to be able to experience giving birth to a healthy daughter. Through the entire pregnancy and the birth, I was able to start forgiving myself (maybe for the first time) for the things that were not my fault, possibly for the fact that historically I had only experienced trauma associated with childbirth and motherhood.

The night before she was born I saw two falling stars.

Greta and Elliott <3

There is something to be said for getting the chance to sleep in the same room with your baby the night they were born and to KNOW exactly what it feels like to not have that for 88 days, or ever. For being able to put her in a carseat and take her away from the hospital a couple of days after her birth, and remembering the carseat tests that kept your son from leaving for days. For feeling her suckle within the first hour of her birth—something I had never experienced. To put her in clothes you picked out (the nurses had dressed Elliott the first time, when I wasn’t there). To listen to her breathe unassisted, no wires or tubes: to hear her full cry even in those very first moments, a LOUD cry. Even in staying up all night with her for months on end— just you and your family— and no one to tell you some dire reason that she couldn’t sleep. For being able to make the first decisions for her, and not having to weigh what medical intervention would be the least likely to have long term consequences.

Pregnancy after preemies, for me, was like being repatriated with the things I never thought I’d experience having, and to have every moment of it be a godsend, but a godsend of which I was hyperaware. I sometimes think that only the parents who’ve experienced trauma have this “gift”: the gift of being able to recognize and feel gratitude for the very precious thing you have in front of you, to have your hopes realized in the form of a baby, to not have the capability of taking the fragility of that for granted. To be reminded of the strength of your babies that were forced to fight. To realize the absolute gift that babies are. I am filled with a gratitude that is just as wordless and powerful as the grief (and gratitude) that came with loss almost 8 years ago, and once again, I am speechless.

[Note: I’ve debated for months whether or not to write this blog with the understanding that this isn’t what always happens with a pregnancy after preemie. The intention of this is not to say that this is what typically happens nor that this was simple. I chose not to discuss the various issues that came up over the course of my pregnancy that were scary (in this particular blog). This is not intended to imply that only healthy babies are worthy. My hope was to convey the wonder and love that came back to me with my daughter, and existed wholly with my sons, albeit under different circumstances.]

Simple Things NICU Moms (and Dads!) Can do to Take Care of Themselves

Being in the NICU and for months afterward, as a therapist I *knew* I needed to practice self-care in order to keep standing and survive the numerous stressors we had to juggle on a daily basis. Unfortunately, as I learned, the practice of self-care was easier said than done, and the things that people suggested (getting more sleep, taking a day off, etc) were oftentimes impossible given the circumstances.

Photo by metinkiyak/iStock / Getty Images

During the NICU we had to cope with making medical decisions, sleep deprivation, and having chronic anxiety. For me: pumping all night and day. For my husband: having to go to work and continue functioning on a professional level while at the same time his heart was in an incubator 10 miles away. For both of us: dealing with an array of personalities providing care for our sons, aching to be able to take our boy home, grief, depression, isolation, chronic stress, the feeling that our basic existence was moving forward without two very important people being close to us. In a nutshell, the experience was a recipe to create PTSD.

After the NICU and for the following year, stressors included things like: isolation for months during quarantine, debt, the continuance of medical issues, coordinating medical care and appointments, anxiety, stress, grief, the "typical" stresses associated with having a newborn like prolonged sleep deprivation, learning how to parent, coping with getting along with a new human being. As NICU parents: the feeling that friends and family who in the past had been our primary supports no longer truly "understood" what we were going through. The stunning, debasing feeling of hearing your baby cough the first time they get sick after the NICU, and the fear it inspires deep inside. Sometimes, NICU parents also have to cope with diagnoses, medical and otherwise. 

One of the things I found useful was to surrender to the fact that I might need to trust others to find guidance in learning how to take care of myself. Here are a few tips in self-care that I've gathered in my family's quest to make things easier for others who may be struggling:

During the NICU:

1. Take at least one "time out" from bedside per day.

At around 60/88 days into our total stay, I realized that Lucile Packard Children's Hospital had some beautiful grounds to walk around.

Often, in our quest to advocate for our little ones, we become accustomed to the practice of staying bedside throughout the day and night, even when we are hungry, exhausted, or haven't seen the sun for days on end. Going to a support meeting, getting a coffee, or even taking a short walk outside can provide a huge reprieve and actually improve your capability to weather decision-making, disappointment, or manage anxiety.

2. Drink a lot of water.

This sounds really basic, but in reality it can provide a huge amount of healing when you are coping with the NICU. With the chronic stress of being in a hospital environment, lack of sleep, and exposure to numerous germs etc., being in the NICU can put you at a higher risk of catching a cold, which then keeps you from being able to visit your baby (it's a terrible negative feedback loop). Drinking water not only keeps you hydrated enough to hopefully produce breast milk, but also clears your system and helps your body cope with chronic stress.

3. Fire Dr. Google, join an online support group instead.

At first it's extremely tempting to google all of the myriad procedures, diagnostics, and issues that you're presented with when your baby is in the NICU (believe me, I know this personally!). After all, predictability is a HUGE source of help when you're dealing with chronic stress. However, due to the impersonal/inaccurate nature of utilizing a search engine, you can accidentally find yourself in a space wherein you feel the worst case scenario is inevitable, and hopelessness becomes your daily go-to. Finding an online support group on Facebook or BabyCenter can put you in contact with families that are going through or who have been through very similar circumstances, and whose human responses of support may provide far more comfort than the cold diagnostics spit forth by a search engine that doesn't know the intricacies of your family's story.

4. Make a space for you and your partner to process your experiences.

The partnership of parents oftentimes becomes compromised when a family is put into a crisis. The roles each partner plays in the NICU are demanding, draining, stressful and isolating. Often, based on our own histories, partners have different ways of coping with stress that can also create a space/distance between us. Setting aside time, even 15 minutes, per day so that you and your partner can vent or process your experiences can create a safety net for your relationship that is stronger than you would imagine. Actively listening to one another and trying to get on the same page with each others' struggles will not only provide each of you with healing, but will build an incredible foundation wherein your trust for each other can flourish for years moving forward.

5. Set boundaries where you need to.

I shut down my Facebook account. Others delegate a close friend or family member to manage their pages or communicate news. Set aside a time of day (or the week) when you will check in with one person, who can then relay messages about what's happening in the NICU to the other individuals who care. I remember during our experience, talking about the various surgeries, transfusions or procedures triggered anxiety and emotional flooding in my mind. At the end of the day in the NICU, the last thing one needs is to feel triggered yet again. Strategize ways in which you can prevent feeling drained by taking care of others-- but at the same time communicate the news you want or need to share. Tune into yourself and choose what works for you. Some families find that direct communication and/or social media is helpful, and that's ok too. Developing a conscious approach to the boundaries that you need in order to best thrive can save you from feeling drained.

6. Find your "lighthouse".

Elliott & the sunset.

Oftentimes, when faced with the NICU, families are thrust into the most anxiety-provoking and painful experience they could have imagined. Finding your faith, spirituality, or other belief system and making a space for it each day is incredibly healing. For me, developing a sense of mindfulness and reading about how it worked made me feel a considerable amount of insight and safety in my day to day experience. Acknowledging just how much I loved my sons also created a guiding light that got me through each day. In our darkest moments, the things that feed our soul and survive the trauma oftentimes become more apparent, because they're the only things left. Recognizing that as a strength and deliberately creating a space for it can make one feel armed against the flurry of traumas one is expected to juggle each day in the NICU. I recommend examining yours. 

7. Maintain a space for self-expression.

Someday, your NICU experience will (thankfully) be a memory. But it's surprising in the future how much you might want to remember, how much you'll seek mementos of your extraordinary journey, how much you will treasure the things that mark that space in time. Taking photos on a daily, weekly or monthly basis, decorating the incubator(s), keeping a journal, creating a baby book, all of these are things that might prove to be extraordinarily helpful not only in processing the experience in the moment, but in finding the value in it in the future (possibly even in explaining the story to your little one as they get older). Other things include creating a soundtrack (I dedicated songs to William and Elliott throughout our experience that I'd play en route back and forth to the hospital each day), keeping a spoken-word journal, creating a blog, or knitting/crocheting blankets or clothing for your little one. In expressing yourself you can create your own, personal experience out of what can be a very disorienting process. In making your own mark, you re-empower yourself and your family as important, unique people facing extraordinary circumstances, and the individual ways in which you withstood them.

Being a NICU parent is stressful. And while many of us find the resilient parts of ourselves we never knew existed while going through the experience, the notion of figuring out a way to practice "self-care" during the experience can sound like tacking on the responsibility of learning a foreign language while going through the hardest time of your life. Nonetheless, practicing self-care can make a significant difference in setting the context for whether you are surviving the experience, or thriving within it.

Next up: self-care practices for after the NICU.

Please feel free to comment with ways you practiced self-care in the NICU that aren't mentioned here! The power of sharing resources is insurmountable.

Trauma-Informed Care Has Incredible Benefits For Patients and Staff

My post about trauma-informed care and integrating it into hospital culture posted on KevinMD today! So happy to have the opportunity to raise awareness about best practices in approaching clients coping with crisis and trauma. What was the team approach like at your NICU? Was there anything specifically positive or negative about it? Really enjoying conversations about how we can manifest positive relationships between patients and providers.  Have a read here.

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.

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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". 

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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?

Guest Post: Finding Strength and Healing Through the Holidays

Sona with friends JoAnn and Darrin, holding a photo of their sweet Brighid

By: Sona Mehring, Founder of Caring Bridge

As founder of CaringBridge, the nation’s most established social networking platform for people immersed in difficult medical journeys, my exposure to the struggles of patients, family caregivers and loved ones seems reason enough to just skip the holidays! Instead, I feel inspired. Across more than 550,000 CaringBridge websites that have received 2 billion visits over 18 years, I am awed by the power of hope and compassion that shine through a health crisis. In moments of celebration – Outside the Incubator!– and in the terrible times, too, I have come to believe in the gift of healing.

I can’t pretend to explain this gift, but I experienced it when I created the first CaringBridge site in 1997. My dear friends, JoAnn and Darrin, had endured a life-threatening pregnancy, days in the NICU and the devastating loss of their newborn daughter, Brighid. I never imagined what Darrin’s exhausted request for me to “Just let everyone know what’s going on,” would become. I also never imagined the sea of caring people whose waves of love and support had surged through the Internet to comfort her parents while in the NICU.   During those days, I saw what healing looks like.

Any time you can give – or receive – the gift of healing this holiday season, do it! The gifts come as much from taking time to express encouragement as they do from pausing to take in encouragement. My hope is that for a brief minute, you, too, may experience the essence of the “The Most Wonderful Time of the Year.”

Sona Mehring is founder and CEO of the global nonprofit organization CaringBridge.org, based in Eagan, MN, and author of “Hope Conquers All.” 

"The Eternal Sunshine of the Spotless Mind"?

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A documentary discussing an interesting issue was recently brought to my attention. It's about the plasticity of the brain, and talks about the potential for scientists to either place false memories or remove traumatic memories from individual's minds as a way to "heal" from trauma. Pretty science fictiony right? 

It got me to thinking about traumatic memories, particularly those of NICU parents. NICU parents have a unique situation: one in which the trauma that they've been exposed to had to do with witnessing their baby or babies fight for their lives in the hospital-- horrific-- but not necessarily in the same way that witnessing a car accident or physical abuse might be, as our trauma is intertwined with our babies' entrance into the world.  On this topic I was quick to realize that there's no way I would prefer to forget my traumatic memories; not only do they contain critically important details of my sweet boys' lives (and William's passing), but at the same time, the experiences gave me a completely different sense of the world around me. It wasn't necessarily a positive sense, but it felt powerful and important. It most definitely changed the way I perceived things; the way I think. 

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Trauma is essentially the experience of something terrible-- it can be either through our own experience of crisis or through watching someone we care about struggle with something extraordinary. Our brains work hard to make a discrete memory of traumatic circumstances for the evolutionary purpose of being prepared if something along the same lines should happen again. For example, one of my earliest memories is that of grabbing a metal railing to pull myself out of the pool at a swimming lesson-- it was burning hot-- I let go and sunk back into the pool. My mind stored that memory as an extremely important thing as my fear of drowning and the reality of it took over at that moment-- I believe I was only two years old.

Our experience of trauma becomes "disordered" (I hate that descriptor) when elements of our reaction to it continue to affect our lives in a negative way long after the trauma has ended. Many NICU parents have experienced this in ways like hearing a beeping noise that brings you back to the constant alarm of the apnea and other monitors in the NICU and becoming anxious, perhaps even sweating or developing insomnia in response to it. Many times it is our bodies that respond to these triggers; I remember once smelling hand sanitizer that had a similar fragrance to the one at our NICU and becoming physically ill. In fact, many newer theories about the experience of trauma posit that we hold much of these experiences in our physical bodies. It makes sense, as traumatic memories are often stored in a different part of the brain than our autobiographical memories; it is nonverbal, and has much to do with the sensory perception associated with specific memories: the limbic system. 

The neuroscientist Dan Siegel writes much about the notion that the attachment a parent has with their child can be gauged by that parent's own narrative memory and whether it is coherent or not. Additionally most trauma literature within the field of psychology puts forth the notion that in the treatment of trauma, the goal is for the client to develop a cohesive memory that incorporates the traumatic event within it. Siegel talks about how when a parent has gone through a traumatic circumstance, it's essential for them to integrate the memory into their own personal narrative in order to have an optimal attachment with their baby (Siegel, 2001). It reminds me of a conversation I had with a good friend when she was pregnant with her son. I told her that I hoped he would "always be happy". Her response surprised me at the time; she said that "I think it's also important for him to learn about sadness too". The conversation shifted the way that I perceived parenting significantly, and in actually becoming a parent, I realized that her words held even more power and honesty than I had previously thought. To imagine human beings as ideally being two-dimensional super-happy people leaves out a huge piece of the human experience. Without sadness or pain, what would happiness look like? 

So, what of it when we are confronted with the idea that we could forget the NICU and everything that happened there? Everything that at once deconstructed our lives but at the same time brought our children into the world? What would it mean for our attachment with our children that we wouldn't have any information about our most painful experiences, that were innately intertwined with their lives, to share with them? What of the gaps in our narratives? What if instead of "removing" traumatic memories from our conscious/unconscious mind, we instead worked to figure out how to perceive them differently-- perhaps in ways that serve us, our children, our families and friends in moving forward?

What if, instead of holding on to the end goal of "forgetting" trauma, we chose to carry it with us, perhaps in the hope that in communicating what we have been through, we could help others to understand it? 

Siegel, D. (2001). Toward an interpersonal neurobiology of the developing mind: attachment relationships, "mindsight," and neural integration. Infant Mental Health Journal, 22(1-2), 67-94.

If your interest is piqued by this subject, the documentary I referenced here is called "Breakthrough: Decoding the Brain" and on Sunday, November 15, at 9 pm ET it will air on the National Geographic Channel.