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.

Are You Curious as to How to Implement Trauma-Informed Care Practices?

Excited to announce my *free* webinar with the Preemie Parent Alliance coming up this Thursday! Click the photos below to register to attend:

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.” 

How to Find a Therapist

My guest blog at NICU Central posted today; it's about becoming an informed consumer when seeking out clinical help during or after the NICU. So great to collaborate with such an awesome provider and NICU nurse. Check it out for tips in finding a therapeutic collaborator in making sense of the NICU:

The NICU experience; words to describe it. Terrifying, stressful, saddening, maddening, traumatic, disempowering, fearful, unpredictable, scary, mystifying, changing, bizarre lights, jarring sounds, life and death, tubes, new languages, new people, infection, struggle, adjustment, exhaustion, the unknown, the unexpected, lack of time, too much time, stress, fear, fear, fear. Simply using word association to describe the experience brings back the sensation of being in a new place, not knowing the outcome of any minute, of constantly being reminded that nothing is promised and that there's no way of knowing what tomorrow (or even the next hour) might bring. The words fall short of aptly describing the circumstance, but can give a slight sense of just how destabilizing a traumatic birth experience and the subsequent hospitalization of your baby can feel for a NICU parent. I know because I was one... (Read more at NICU Central)

Mourning a Loss that Doesn't Quite Have a Name: Grief and Loss in the NICU

I just published my first blog for Hand To Hold last week. This is such a fantastic organization with whom to be involved. Looking forward to writing more articles for them about the intense journey and self-discovery of a NICU parent. Check it out here.

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.

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 (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 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.