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.]

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
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.

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 &amp; the sunset.

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.