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

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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.

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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.

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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.

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

Greta and Elliott <3

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.]

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.

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. 

4 Things About Mindfulness Anyone Can Learn from a NICU Parent

The travails of a parent with a baby in the NICU are scarcely describable in language. After what is oftentimes a traumatic birth experience or high-risk pregnancy, parents are thrust into a fast-paced medical world, bamboozled with jargon, major life decisions, separation from their babies, trauma, frequent traveling back and forth to the hospital, interaction with a multitude of strangers regarding the care and survival of their babies, and, sometimes, the isolation that comes with going through an experience quite unfathomable to most of their friends and family. Even if their baby survives the NICU and comes out unharmed, parents are often left to cope with the grief and loss that comes with having their lives upended, all that is recognizable about it stripped away, only the bare bones of their beliefs left apparent.

The experience, suffice it to say, is not something that can be wrapped up in a bow and sold as something that is “inspiring” or positive. It is, however, oftentimes a unique opportunity for parents to discover what it is about themselves that can withstand a traumatic experience, as well as what it is that they will take a stand for in moving forward. Researchers are finding that it's common for individuals who have been through a traumatic experience to find things about themselves that maybe weren't apparent before: appreciations, values, understandings, goals. In discovering these things, individuals can in a sense "reconstruct" themselves after trauma, organizing their lives in a way that honors these discoveries, feels meaningful, and that appreciates the difficulties that they've experienced. 

In going through our own experience and in reaching out to other parents who have gone through it as well, I've found there are some shifts that have commonly taken place among NICU parents. Here are a few incredible things that the circumstance imparts to many that go through it, and that can benefit anyone looking to find mindfulness in their lives: 

1.) Never underestimate the miracle of breath. There is something to be said about seeing your baby struggle to take a breath in the NICU. It washes away all cares about minor matters: things like whether you’re having a boy or a girl, whether your baby is bigger, smarter, more advanced or more beautiful than others, whether you have the perfect products to decorate their room, whether you seem to be the perfect parent or whether you're meeting the unspoken expectations of the people around you. The phenomenon of losing your care for things that really don’t matter in the long run can persist for NICU parents, and all that other stuff? In the context of breath? They lose their importance. Letting those things go can give you the ability to see, embrace and enjoy the “little things” we oftentimes unintentionally take for granted. And it’s breathtaking to witness when you’re able to appreciate it.

2.) Planning for the future doesn’t serve you very well when you’re in the moment. Going through a crisis, one can’t predict the next hour, much less the next week, of their lives. In our day to day life, when things feel simpler, or we feel more “in control”, it’s easy to lose sight of the fact that the hopes and fears of the future that we hold oftentimes mean nothing in the face of what actually might happen. Letting those go and making a deliberate effort to be present can have a profoundly positive influence on your life. Embracing the unexpected can highlight the beautiful imperfections you may not have noticed in attempting to follow a plan, and can soften the blow of a challenge or disappointment.

3.)  This is water. If you’ve never heard the David Foster Wallace speech, I recommend you listen now. In it, he talks about the importance of setting aside the single-minded perspective most of us hold, of seeing things as how they affect us as opposed to deliberately creating a space for empathy, even in the most banal and frustrating of circumstances. I remember on one of the more terrible trips my husband and I took to the NICU, when William's health had taken a turn for the worst, of driving frantically to the hospital, weaving through traffic to get there as soon as possible, terrified that every moment we were absent was one we had lost forever. But, to everyone else, we likely looked like road-ragers. After that experience, I realized that the anger or annoyance that sometimes sprouts up when you’re dealing with the actions of anonymous others? It’s not worth it, because you never know what someone might be going through in that moment. Practice forgiveness; practice patience. Try to sit with the idea that all of us contend with our own struggles, our missteps and mistakes may just be indicative of the amount of pain from which we suffer. 

4.) Love is stronger than you think. It’s hard to fathom just how strong you are until you are forced into it. NICU parents are swept up into a world that’s as painful and anxiety-provoking as it is miraculous to see their tiny charges thrive. In going through it, one realizes that the love we have for each other is one of the only things clearly apparent, even in the most dire of circumstances. Many parents never could have imagined that they’d be able to manage a life in which their baby’s basic survival could be called into question on a daily basis for weeks on end; I certainly never thought that I could. But in the moment where you think you could lose everything, suddenly what you DO have becomes blatantly apparent, and, surprisingly, you can find beauty, strength, and comfort in even the simplest of expressions of love. Hold onto it as hard as you can, because the magnitude of that love will help you get through almost anything at all. 

I'm curious as to other realizations, values, beliefs or appreciations that other NICU parents may have discovered through their journey? Please feel free to share in the comments section below.

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: 

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.

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&nbsp;(and first kangaroo care!).

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&nbsp;rapscallion at three years old.

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.