Making Memories During Difficult Times: Remembering as a Way of Coping in the NICU

During the first few days of my sons' lives, I was so sad, so overwhelmed, my life so upended and my anxiety level so high, I didn't want to remember it. I remember distinctly thinking, "I don't want to remember any of this at all". At the time my logic was, "why would I want to remember seeing my boys in pain, hooked up to monitors and fighting for their lives? Why would I want to remember what it feels like during what seems to be the worst days of my life?"

Phone photo of Elliott on the ventilator.

It wasn't until after we got home from the NICU and I made connections with other NICU parents that I realized this was a somewhat common experience, however guilty and shameful it made me feel while we were still in the hospital. Even if parents didn't necessarily feel they didn't want to remember the experiences at hand, many are so overwhelmed by the sudden changes in their lives that they don't have the presence of mind to even think of things like taking photos.

What saved me from having a huge gap in my visually-documented memory were a few experienced, emotionally intelligent nurses who made sure that plenty of photos were taken, even when William's health failed, and who further encouraged us throughout Elliott's stay to document all of his little milestones, as painful as they might have been for us. Because of these incredible individuals, our family has pictures of the good and the bad, the horrific and the beautiful, and of each difficult step forward that we took together, and some of the steps backward.

The NICU can be stunning in its complete takeover of what most parents once thought would be a predictable, beautiful experience: the birth of their baby. The first milestones you witness in the NICU are often those that are in their own ways tragic, if only because they are necessary. Getting off of the oscillating vent, being allowed to hold your baby, nippling, being big enough to wear clothing, transitioning from the isolette. These things are very different than what most of us imagined would be the first milestones; things like smiling, reaching for toys, rolling over, milestones that will likely be many months away for a baby who still has weeks before his/her actual due date or who is struggling with medical issues that prevent them from being able to focus on those actions.

Current trauma research shows that in the healing of trauma, it is important for a person to have an integrated, autobiographical understanding of just what happened. In fact, it's common in all kinds of trauma for individuals to have a response similar to what mine was initially: to want to forget, to deliberately disengage from the experiences at hand, to "shut-down" so to speak. However, research is showing that it's just the opposite that will help us to process trauma in a meaningful way. In thinking about this, I realized that creating a coherent, autobiographical understanding of the NICU had another benefit: helping me to someday explain to Elliott what his first few weeks and months were like, the people that loved him, and to show him the images of his beautiful brother.

Here are a few tips for those new to the NICU, who may be struggling with the exhaustion and stress that the experience brings:

Embed from Getty Images

1. Take pictures, a lot of them. As hard as it is to see your baby hooked up to wires, bili lights, monitors, and in an isolette, some day, most or all of these things will be a remnant of the past. This post from Hand To Hold is a wonderful tutorial about artful ways to take photos in the NICU, written by a professional photographer and preemie mom. Even in a circumstance where you may be coping with loss (as we did), take as many photos as you can with your baby. As heartrending as it may be in the moment, some day the photos you take will become precious.

2. Get a lovey for your baby to do size comparison pictures each month. Some NICUs provide babies with loveys, or small stuffed animals to comfort them. Taking a picture to document your baby's growth each month will astound you due to what appears to be astronomical growth (and ultimately for micropreemies, really is!). This is an incredible way to watch your baby grow at their own pace, independently of any charts, and to see how far they've come. It's also a great practice to continue after your baby's discharge from the hospital and through the first year.

This small poster from EverytinyThing has space on its balloons for each member of your baby's care team to write their name.

3.  Take pictures with your baby's primary nurses, doctors and therapists. Get one of the fantastic products over at EverytinyThing so that your baby's team can write their name on your "My NICU Family" print. The people you see every day at the NICU may seem like they are unforgettable, but years later it can be difficult to remember each of your baby's caregivers and put a name to the individuals that had such a profound daily impact on your family's lives. The isolette decorations that Trish sells can also brighten up your baby's isolette and make the space less daunting.

4. Keep a journal. Journaling not only documents each of the things that happen in your day to day NICU life, but it can also serve the important purpose of making you feel better. Journals can help you express and process your emotional response to different circumstances, if simply by providing a space for you to "get it out". I'd like to emphasize that it's important for dads to write about their experience as well. Again, journals not only serve the purpose of providing a distinct memory of the experience for parents, but can also be something of value in telling the NICU story to your baby when they get older, or in sharing with friends and family about what happened. Personally, in revisiting my journal from my babies' NICU stays, I realize just how strong we actually were, and how easy it is to forget what a struggle it once was.

5.  When in doubt, ask your primary nurses for suggestions. Through their experience, nurses have a good sense of the types of things a family can do to generate memories during difficult times. One thing our nurses did for us was take prints of both of our boys' feet and hands (there are some creative ways of doing this that are worth checking out as well!). They also took pictures or wrote notes each time Elliott had a milestone when we weren't there (I still have the note a nurse wrote when he completed his car seat test in the middle of the night!). Additionally, collaborate with your nurses about the things you'd like to have done in a specific way (for example, the first outfit you'd like your baby to wear and letting the nurses know you would like to be there for it).

Many of the practices I took up in the NICU in order to create memories of the circumstance have ended up becoming valuable to me in life after the NICU, particularly journaling. Even though some of these practices may be difficult to fathom in a challenging moment, or may feel unnatural just due to the fact that you've never done them before, have faith that many of them will prove their worth and hold their worth long after your baby's NICU stay is over.

Stay tuned~ a giveaway of EverytinyThing's "My NICU Family" print is coming to NICU Healing's Facebook page soon! Follow our Facebook page to receive updates! 

Coping with the "Zen" of the NICU: A Breathing Exercise

Being in the NICU is a swift baptism into a world in which nothing is predictable. My feeling was that once we were used to one circumstance, when the words started to make sense or we felt stable, as soon as we started to feel that sweet pang of familiarity, it quickly vanished into the NICU mire and another difficult circumstance would present itself.

My least favorite phrase of all-time, "it's a rollercoaster" felt like some kind of a sick mockery of the groundless world we had suddenly found ourselves floating in. The first time I heard that phrase was the morning after my son Elliott had had a pulmonary hemorrhage and had to be ventilated. His brother William was found to have a grade four bilateral brain bleed and severe infection, and it was related to us that "the 'honeymoon period' [was] over." Welcome to the NICU.

View image | gettyimages.com

However apt the rollercoaster analogy, it's incredibly difficult to become accustomed to the monumental shifts and surprises, both bad and good, that happen on a fleeting and frequent basis in the NICU. After some time living in that unpredictable world, I realized that the momentary nature of it, the way that it forces one to be "present" and mindful of each breath that you or your little one(s) take in, has this zen-like quality to it. After all, when your baby is in the NICU you can't allow yourself to think one day ahead, even three hours ahead, without making the mistake of creating a false security that can be shattered with one bad blood draw, one bradycardia event, one bad test result. This ability to be "present in the moment", or mindful, is considered something to strive for in Buddhist meditation and mindfulness theory. The challenge is that it is very difficult to stay present emotionally, especially in easier times, when it's simple to distract your mind with the entertainment and interest of day to day life. The NICU, for what it is worth, oftentimes forces the ability to be present in the moment upon its patients and their parents.  

“...the human experience is an experience of nothing to hang on to, nothing that’s set once and for all. Reality is always falling apart. In this fleeting situation, the only thing that makes sense is for us to reach out to one another.”

— Pema Chodron, "Living Beautifully: with Uncertainty and Change"

One author whose work spoke to me whilst our family was in the NICU was Pema Chodron, a Buddhist nun whose books about coping with suffering proved to be incredibly useful in living through the experience. Her books "When Things Fall Apart" and "Living Beautifully: with Uncertainty and Change" speak to the notion of losing your grounding in the world, and how in losing that, one can find incredible strength in learning how to face your fears, embrace the unpredictable nature of the world around you, grow spiritually, and find commonality with others that face the pain in their lives. In "Living Beautifully..." she wrote, "...the human experience is an experience of nothing to hang on to, nothing that's set once and for all. Reality is always falling apart. In this fleeting situation, the only thing that makes sense is for us to reach out to one another."

View image | gettyimages.com

Here is a simple breathing exercise/meditation that can help promote calmness, even in difficult times. It is designed to help you learn how to ground yourself, even in times of intense stress. The practice can be useful for NICU parents facing the stress of the hospital, but can also be implemented by anyone facing a traumatic circumstance who feels the need for grounding or feels overwhelmed by their anxiety or suffering. I used to love doing it while I held Elliott skin-to-skin in the hospital, and got so used to the practice that I implemented it at home long after he was discharged. At this point I consider it a tool that I have in facing any kind of stress, and use it whenever I feel a sense of anxiety or overwhelm.

Note: Before beginning, check-in with yourself that you're able to safely do a breathing exercise. Be mindful of how you are feeling, especially towards yourself. It's important to approach a stance of forgiveness and self-love in participating in this exercise. If at any point during this breathing exercise you feel triggered or overwhelmed, stop immediately and take notice of the things around you. Call a nurse, your partner, a family member or a friend and tell them how you are feeling. 

• Sit comfortably, with both feet on the ground and your back against a supportive chair. Close your eyes. Allow your arms to relax. Allow your body to relax. Become aware of your breath, how it feels. Breathe in to the count of six, and breathe out to the count of six. Count as slowly as you can, and breathe in as deeply as possible and out as slowly as possible. Feel your breath in your lungs, notice it. Relax into your breath.

• Once you have established a slow and steady breathing pattern, if you'd like, you can discontinue counting as you inhale/exhale. Notice your breath, how it feels in your body. If your mind starts to wander, come back to your breath and focus on it. Treat the thoughts that enter your mind as passing. If it's useful, you can name them as thoughts or feelings, notice them, let them pass, and return to concentrate on your breath. Connect with how you feel physically in this very moment. Be present with your breathing.

•  Continue in this manner for as long as you'd (reasonably) like to, but for at least 3-5 minutes. When you stop, notice how you feel. Are there any parts of your body that are particularly noticeable in this moment?  Were there any parts of your body that felt particularly stressed? Were there any thoughts dominating your ability to let go of thinking?

• As you accustom yourself to taking time for this meditation, try to delineate more time for it each day. If you'd like, you can even try doing it while holding your baby. As I said before, I think skin-to-skin contact is preferable just due to the closeness it provides, but it's ok if you hold them swaddled. Make sure that you have the ability to sit comfortably and safely hold your baby. Relax into your chair with them snuggled close to you, breathe in their beautiful scent, and find grounding/love/compassion, even in the groundlessness.

Breathing exercises, as simple as they may seem, have the profound ability to induce calmness and presence, even in the most difficult of circumstances. Although at first it may be challenging to let go of thoughts and stresses, with practice, breathing exercises can promote your ability to be present even in fearful times, can provide you with a sense of connection not only with your baby, but with other parents going through similar circumstances, and can make clear what it is that you can hold onto, even in times where it feels like there isn't anything, that you're floating far away from the shore.

For more relaxation techniques and exercises, check out this PDF from the Trauma Center, or go to their website for this and other resources in coping with trauma.