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 & 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.

 

NICU Now Podcast is Now Available!

Very excited to announce that my collaborative effort with the folks at Hand to Hold, the NICU Now podcast, is now available for listening. Hand to Hold founder Kelli Kelley and I discuss everything from postpartum depression, attachment, bereavement, bonding, self-care, to partnerships during and after the NICU. Please have a listen-- there are some wonderful resources in these episodes!!

When Memories and Trauma Collide.

Photo by alice-photo/iStock / Getty Images

Photo by alice-photo/iStock / Getty Images

A few things I know now about my memory of the NICU; the things that will never be the same again: I will never be able to smell the hospital-brand hand sanitizer-- stoically and silently perched in plastic holders like mute witnesses along the hallways (the same stuff that almost rubbed my hands raw after at least a dozen applications daily)-- I'll never smell it again without my guts lurching.

I will never be able to hear incessant beeping without remembering desperately looking to see whether it indicated a de-sat or bradycardia event descending upon one of my babies, a flood of information swarming my thoughts-- "is it real or did a wire come loose? Is he dusky? What are the levels?" all the while my stomach dropped and it felt like the world was closing in-- darkness creeping into my peripheral vision, my senses focusing in on the one important thing before my eyes-- my sons.

I'll never again listen to Chopin's Ballades without feeling the groundless, terrifying, heartbreaking yearn to feel my son William's skin against mine, his sweet head tucked safely into my clavicle: it was the only music we would have time listen to together before his death.

These things have new meanings now. Some of which didn't present themselves until I had the sensory experience of hearing, smelling or feeling them again: I had to re-experience them to remember.

The mind has a tricky way of working sometimes. When it comes to our memories, the events that challenge our very being most horrifically oftentimes become coded as the most important things to remember in our minds. What’s more, it’s being increasingly verified through research that we remember these events in the lower parts of our memory system, meaning that these memories often come to the surface as re-experiencing, sensory events, as opposed to stories that we have access to, stories we can use language to describe, stories with beginnings, middles and ends. 

The lower part of our brain systems work much like that of other mammals. While domesticated animals have the beginnings of a pre-frontal cortex (the pre-frontal cortex is where language, logic, and coherent communicable thoughts reside), animals' limbic and reptilian systems are fully developed and serve the same functions that those areas of our human brains serve-- basic survival functions like heart rate, blood pressure, breathing and muscle function in the reptilian brain (amongst other critical things!), and survival instincts based on the fight, flight or freeze instinct in the amygdala, part of the limbic system. These three parts of the mind-- prefrontal cortex, limbic, and reptilian systems-- make up what we refer to as the "triune brain".

Because it's the lower, unconscious part of our brains that take responsibility for our survival instinct, many times that instinct comes forward in moments we don't expect it to, sort of like the body's innate strategy to jump into action before you even know there's a lion behind you.

Everyone has two memories. The one you can tell and the one that is stuck to the underside of that, the dark, tarry smear of what happened.
— Amy Bloom

Since threatening memories are "coded" as sensory experiences, and remembered not only as what happened, but also the way it felt when we experienced it, trauma memories can come to structure our perspective. It can also make us feel like the trauma has never ended; as if at any time something bad could happen again. Many individuals who have experienced trauma report feeling as if “the other shoe will drop” weeks, months, even years after they’ve been through a crisis-- sometimes they actively look for the threat in an effort to have even earlier warning and thus, more time to respond.

This can have numerous effects on our ability to remain present, to be in the moment, and in our ability to experience things as spontaneous or enjoyable. If our brains are focused on survival, warning signs of threat, and the sensory memories of trauma, what focus is left to expend on being in the moment? How can we shift ourselves from living in response to the things that are happening to us, towards living freely.... liberated to being in the moment and being open to new things? Is there any way to extricate the trauma from our first memories of our relationships with our babies?

According to Bessel Van Der Kolk, leading researcher in trauma-related therapies, an important part of the healing is the physical component of rewriting the experience of certain sensory-related things. Hence, there is an answer in the idea that the more we hold our babies skin to skin, even after the NICU, that the memory of what it feels like to hold them in an unhindered environment will eventually supercede that of the NICU trauma memory. The more we smell hand sanitizers in a non-crisis-related environment, the less likely it will be that we will have a panic attack when smelling it. The more that we experience happiness in the context of our parenting experiences, the more likely the trauma will become a memory, and not a structural component of our relationships with our families.

Reference:

Van der Kolk, B.A. (2014). The body keeps the score: Brain, mind and body in the healing of trauma. New York: Viking.

Book Review: "The Moment You Were Born"

The phrase "the moment you were born," for NICU parents, might conjure images of what was likely a traumatic delivery, the fervor of doctors and nurses transferring the baby to the intensive care unit, or the moment that the family's lives shifted toward a completely different reality than we'd ever expected. In the new book "The Moment You Were Born", however-- beautiful images couple with a story that is as expressive as it is meaningful-- to rewrite that narrative and attempt to create a space of calmness, even in difficult circumstances.

Written by a pediatric speech pathologist who has also worked in NICUs and with the children who have graduated from them; in addition to a clinical pediatric neuropsychologist who has worked in NICU follow up clinics as well as schools for children with special needs, the book is both gently educational and artistically beautiful. It's clear that it's written by individuals who have a deep knowledge of the NICU and the feelings that it can bring. The illustrations "normalize" the ways that NICU infants appear, while the text speaks to the various frustrations that come with not being able to hold your baby right away, focusing on the amount of love NICU parents feel towards their babies.

Not only is this book appropriate to read to your infant while s/he is still in the NICU, it may also be a helpful book to read to children when they ask what it was like when they were in the NICU. What I like about the notion of reading it in the NICU specifically is that it explains the difficulty of being in hospital and the deep desire that parents harbor to be able to hold and become close with their babies-- even when physically, they can't. To me it seems that it would be comforting to explain those circumstance to the baby, to use your calming voice to explain to them how strong they are, and how strong your love is for them. It's hard to adjust to the idea that the best way of strengthening your attachment with your baby is sometimes solely through the use of your voice; this book not only helps you guide that idea and feel more empowered within it; it very literally illustrates it and gives parents the opportunity to set a very loving tenor to that bond. 

It's refreshing to read a book that specifically addresses the unique circumstances that NICU parents face, while at the same time giving suggestions as to how to build attachment, putting words to the strength of the babies and families who are going through the NICU, and talking about our babies' remarkable introduction to the world. I highly recommend this book to anyone who's been through the NICU, but especially to those families who have just been inducted into it, and are struggling to find a way to connect with their baby, and don't yet feel comfortable in knowing how.

Check it out here and stay tuned for a giveaway of a free copy from NICU Healing in the coming weeks!

I can't wait to present about trauma-informed care at the National Perinatal Association's annual conference In Houston! Check it out and if you're there-- please attend!