Interview with an Insider: One NICU Nurse Shares Her Insight

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Nurses play a very special role in the NICU. They are the communicators, many times delivering messages in plainspeak and providing parents with emotional and practical support where doctors cannot. Sometimes, while in the state of having a baby hospitalized, it's hard to understand where a nurse may be coming from, and it can be challenging if there is a communication difficulty between parents and nurses. Building a trusting, open relationship with your baby's nursing team can be incredibly valuable both to your state of mind, as well as improving the continuum of care for your baby. Even when the relationship is challenging, it is helpful to remember that these individuals are heartfully dedicated to the care of premature and medically complex babies, and that they, too, cope with trauma on a daily basis.

Oftentimes, while a baby or babies are hospitalized, nurses become the primary contact with and support that NICU parents have day to day. Our relationship with the nurses can color our NICU experience; making us feel more supported and part of a team, or, sometimes, making us feel more isolated, fretful or dismpowered. Parents' relationships with their baby's nurses are invaluable during a NICU stay, so I reached out to one of Elliott's primary nurses, Cara Romanos, to ask her a few questions about her experience at the Lucille Packard Children's Hospital. Here are a few insights that may give us a sense of one nurse's values and beliefs.   

What led you to become a NICU nurse?

I have always had a deep love for babies, children and their innate magic. I knew in my heart that I would in some capacity find my work with them. Before becoming a registered nurse, I worked with disabled children, many of whom required nursing care, and found myself drawn toward nursing. Once introduced to the NICU, and most specifically the fragile, heroic, and to my eyes, extraordinarily beautiful preemies, I fell in love.

How would you define your role as a NICU nurse?

I'm an RN who cares for premature babies, babies with birth defects, severe or life-threatening illnesses. I work under the direction of a doctor, or various doctors as I work in a university hospital. Aside from providing nursing care which includes many technological aspects, I also provide comfort and support to families.

What are the challenges in being a NICU nurse?

Working in intensive care is often challenging. Infants can go into distress quickly and as a NICU nurse I have to be constantly aware of and understand distress signs. I need to be very detail-oriented and be able to manage various technologies simultaneously. At the same time, I need to be kind, patient and emotionally objective while, my hope is, always remaining nurturing and deeply compassionate.

“A preemie’s parents are warriors; great warriors. They protect and advocate fiercely for their baby. Their love is so very apparent and unconditional; exceptional. They... have become my heroes and I feel honored to work for them and ‘fight’ at their side. ”

How would you describe your relationship as a nurse with NICU parents?

My hope is that it is nurturing and comforting on my part. I am also a teacher of sorts as I guide them through the sounds, tubes, wires and strange machines that surround their beautiful, fragile baby.

How do NICU nurses support parents while baby is in the hospital?

We can encourage them to touch and hold their baby (or babies, if they have more than one) as often as is appropriate or feasible. We can also encourage them to care for their baby as much as is appropriate as well, like participating in diaper changes and temperature taking.

We also encourage buying a device that can record their voices, so their baby may hear them talking, reading or singing to them when they are unable to be there.

How can parents advocate for their baby?

They may use their voice. If they are unhappy, they should approach the nurse/doctor or whomever directly to talk about their feelings. If they feel they've been ignored, they may talk with their social worker to set up a conference meeting with their medical team, or talk with the nurse manager about a particular nurse or nurses. Most NICUs are family centered and care deeply for the family as a whole.

“I encourage trust. Trust the nurse and the medical team more than what you read on the internet. The team has years of experience and education and your baby’s patho-physiology is more complicated to understand than what can be read by a few articles. Trying to let go as a parent must be very difficult, and most nurses do understand this. My hope is that most of your experiences are met with compassion. ”

What can parents do if they feel uncomfortable with a particular nurse's care?

They may approach the resource/charge nurse working that shift, or the nurse manager if available, and ask to not have that nurse assigned to their baby again. If staffing numbers/acuity allow for it, another nurse may be able to take over for their baby's care.

How can parents develop stronger relationships with their baby's nurses?

This is a difficult question. There are many different nurses with varying personalities and styles of nursing. There are nurses whom you will develop relationships with instantly, and others with whom it will take time.

I encourage trust. Trust the nurse and the medical team more than what you read on the internet. The team has years of experience and education and your baby's patho-physiology is more complicated to understand than what can be read by a few articles. Trying to let go as a parent must be very difficult, and most nurses do understand this. My hope is that most of your experiences are met with compassion.

What are some useful ways parents can take care of themselves while in the NICU that you've observed?

You can take care of yourself.

I know it's very difficult, but by trusting the NICU staff to allow yourself to leave the NICU and to rest. Sleep. Eat nurturing foods. Walk in the sunshine. Talk to each other. Allow yourselves to feel your feelings and don't judge each other if you are reacting to the NICU differently. The NICU is stressful, and if you nurture yourself, you will be more nurturing for your baby.

When parents feel especially overwhelmed by the NICU experience, what do you recommend they do? How can nurses be a resource?

As a nurse, I can call their social worker to the bedside. They are a wonderful and comforting resource and are able to sit down alone, away from the unit to listen and nurture. They are also able to connect them with a psychiatrist for sessions and if needed, medications to aid with depression and anxiety. The NICU experience is deeply traumatizing for families and many suffer from PTSD after their experience. It's very traumatic to witness one's baby having invasive medical procedures and life threatening moments.

When do you find it the toughest to be a NICU nurse?

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When I bear witness to intense suffering. Both the babys' and the parents'. I work in a level III-IV intensive care NICU and we care for the tiniest and sickest babies. At times they can experience immense pain. They can often have various central lines, catheters in their chest, bladder, various tubes in their throats and noses, etc. They are fighting for their lives. I can't even imagine the pain the parents must be feeling to have their child in our NICU. When they are at their greatest moment of weakness or need, I know I need to stay strong and be a source of comfort and support.

What are some of the unique skills and gifts that parents bring to the table?

Their immense love of course, which leads to a tender touch and unique depth of connection. Their presence and voices calm and lower their baby's vital signs. I've seen this and love to point it out to their parents so that they are aware of the difference they make in this positive way. They are able to hold their baby bare skin to bare skin which again is soothing, calming and very beneficial to their development.

“I am in awe of the depth of strength preemies have. They are so very fragile and yet powerful in their will for life and ability to endure. They are courageous little ones and my greatest heroes. ”

Do you have any "sparkling moments" or stories that stand out to you in your experience of being a NICU nurse?

I've had many wonderful primary babies who have gifted my life and so have an abundance of "sparkling moments" held in my heart.

There is one little boy who was born at 29 weeks gestation weighing 2 lb., 11 oz. I was the RN on his transport team and we shared a helicopter ride back to my hospital. In our NICU he underwent various major intestinal surgeries, lost bowel, suffered from sepsis and hypovolemic shock. Three times his parents were told to expect him to not live. He spent seven months in the NICU. We both just celebrated our birthday, which we share. He is now a beautiful and completely healthy six year old. My sparkling miracle.

Do you ever feel traumatized by your work? How do you practice self care?

I wouldn't be human if I said I didn't feel at times overwhelmed and traumatized by this work that I love so deeply. As nurses, we care deeply for your baby. We become their biggest advocates and cheerleaders. We "will" them with our care and hope along with you. In doing so, we also feel deeply crushed during the "bad" days and grieve enormously with you if a life is lost.

As nurses, we share with each other and hold each other up. We speak with our church pastors/priests, exercise, cry and allow ourselves to grieve. Some of us even see a therapist when the grief is particularly overwhelming.

What are the biggest strengths of the preemies and their parents that you notice?

I am in awe of the depth of strength preemies have. They are so very fragile and yet powerful in their will for life and ability to endure. They are courageous little ones and my greatest heroes.

A preemie's parents are warriors; great warriors. They protect and advocate fiercely for their baby. Their love is so very apparent and unconditional; exceptional. They too have become my heroes and I feel honored to work for them and "fight" at their side.

                       Cara, Eli, and his doppelganger friend.

Cara Romanos has worked at Lucile Packard Children's Hospital Stanford for almost 17 years. She loves the magic and wonder that children bring into our beautiful world and she strives to keep it here. She is also mommy to Eli, the sweetest chihuahua she's ever encountered.

After the NICU: What Meaning do You Take with You?

After Elliott was discharged from the NICU and on quarantine, I was left with a lot of time to think. For me, having lost William and spending so many days bedside in the NICU with Elliott, it felt like my entire world had been scrambled into something almost unrecognizable in comparison with what it had looked like even months prior. Transitioning from the "survival" mode of everyday getting to the NICU, making medical decisions, consulting with doctors, nurses and therapists, working towards Elliott's various discharge goals and witnessing Elliott's progress to medical stability was difficult. I had gotten used to the fast-paced nature of the NICU, made friends with his nurses and doctors, become accustomed to the idea that every day could present a new challenge; I even had my favorite places in the hospital to get coffee or take a break from being bedside.

We shifted to a life of being at home on quarantine, adjusting to the day to day, getting used to troubleshooting issues that presented themselves on our own, spending precious alone time with Elliott and starting the process of mourning. All of the events of the past few months started to solidify in my memory, and I started to understand just how this story would profoundly change my life story. But what would that look like? Would this story transform our family into some kind of tragic example of loss? Would we fade away from our friends and family? Was there anything powerful we could take away from it, that, maybe, we wouldn't want to lose, even as painful as the experience was?

When Elliott was about six months old (three adjusted) the peace lily we had put in his room bloomed:

It bloomed in a pairing of two petals, uncommon for peace lilies, which normally  produce one white petal in their flowers.

It was a twin bloom.

When John and I saw it, we were astounded. We felt comforted by it, as if it was some kind of a signal that the earth knew what had happened, that what happened was not to be forgotten. To me, it was also a symbol that despite having gone through that pain, we had somehow been able to move forward. And though it wasn't the way we would have ever chosen to move forward, it had revealed different aspects of ourselves that maybe we hadn't ever noticed before, or seen as a strength. It reminded us that he would always be with us; that our time with him had changed us forever.

Post-traumatic growth is a newer idea in the psychological community. The premise is that after an individual goes through a traumatic or challenging life experience, they then, oftentimes, experience positive psychological changes (Tedeschi, R. & Calhoun, L., 2004). In other words, when you go through an experience in which everything you thought you knew or could rely on is somehow taken away, one oftentimes finds ways of coping with that experience by developing new beliefs or discovering inner resources that before that moment in time were not apparent. Recent articles have shown that, in fact, post-traumatic growth is often more common than the development of PTSD after someone goes through a traumatic experience.

The NICU seems to have the ability to burn away the things that perhaps seemed important in the past, but no longer hold meaning for parents. I don't know a single NICU parent who doesn't understand the very profound value, the gift, of being able to witness your child take a breath unassisted, or swallow without choking, or make eye contact even for a few fleeting moments. Things that for many parents, go (blissfully) without notice.

Oftentimes, for NICU parents, the love that we hold for our children becomes very "operational". In other words, it becomes a very deliberate act of noticing and interacting with our little ones. We go to the NICU, we make decisions and advocate for them, we learn how to participate in their therapies, and accept the problems that present themselves along the way. Love, then, is not just an idea that we have about our relationship, there are actions involved. Prior to having gone through the NICU experience, if you had asked me if I thought I could get through something as challenging, I likely would have told you that I couldn't. That I did get through it in itself is very powerful, and, for me, gave me a sense of just what parts of my sense of self would survive the NICU experience; and it was comforting to discover that it was love that survived it all. It was also awesome to see that my partner had that same sense, and that I could rely on him to carry on on the days that I couldn't.

Despite the pain and anguish of going through an experience that quite literally takes your breath away, perhaps in the survival of that, we find the parts of ourselves that are the most resilient. And I feel gratitude to my boys for having highlighted that for me with their fortitude and grace. Each year, around this time, I get reminded of it when I think to myself about the ways in which I want to move forward in the coming year.

To other NICU parents: what do you DO with the experience of having gone through the hospitalization of your baby? How does your experience make itself known in your day to day life? Have you ever been surprised at how this experience has changed your sense of self or your relationship with your little one(s)? Was there anything of value that you could find in the NICU experience?

References:

Barr, P. (2011). Posttraumatic growth in parents of infants hospitalized in a neonatal intensive care unit. Journal of Loss and Trauma. 16, 117-134.

Spielman, V. & Taubman-Ben-Ari, O. (2009). Parental self-efficacy and stress-related growth in the transition to parenthood: a comparison between parents of pre- and full-term babies. Health and Social Work. 34(3), 201-212.

Taubman-Ben-Ari, O. & Kuint, J. (2010). Personal growth in the wake of stress: the case of mothers of preterm twins. The Journal of Psychology. 144(2), 185-204.

Tedeschi, R. & Calhoun, L. (2004). Posttraumatic growth: conceptual foundations and empirical evidence, Psychological Inquiry. 15(1), 1-18.

Trauma: Why Does There Always Have to be a Reason?

Many parents feel a significant amount of guilt and/or shame after going through a traumatic birth experience and the hospitalization of an infant. One of the most salient conversations I had at the NICU was with one of my sons' neonatologists, who told John and I to be gentle with ourselves. He said we would likely have thoughts, lots of them, desperately examining every detail of the days leading up to our babies' birth,  trying to figure out what we did wrong to cause my preterm labor. He was correct. In fact, we had already gotten started researching what it was that made us absolutely responsible for the traumatic birth of the babies. Because how could such a horrific and devastating event happen for no reason? Maybe it was something I ate at dinner, maybe when I moved that piece of furniture a few days ago. Should I have taken a leave of absence at work? Was I too stressed out? Moving. Life events. Did my pets somehow give me an infection? Maybe I wasn't mindful enough. We must have done something wrong.

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Traumatic stress, so it seems, often rolls into our lives hand in hand with guilt and shame. Guilt and shame are so common in the experience of traumatic stress that at one point they were considered as potential diagnostic criteria in the classification of post-traumatic stress disorder. Individuals facing other forms of traumatic stress also oftentimes take up the practice of self-blame in the aftermath ("what was I wearing that prompted him to assault me?"). So what gives? Why is it that when an individual goes through a traumatic experience, it's so common to then manifest shame, self-blame and guilt? And what do we do with that? Why is it so hard for us to sit with the notion that sometimes things happen for no known reason?

Psycho-evolutionary theory holds that an individual feels shame and guilt much in the same way an animal might, indicating to the community around them that they have been harmed and need help (Harman & Lee, 2010). So, maybe when we feel responsible for a tragic event, it's our unconscious way of "performing" our trauma for our community, exhibiting our remorse so that we aren't excommunicated. Fair enough, but what if shame and guilt are holding us back from functioning in our day to day lives? What then?

1. Learn about your circumstance.

Chances are, there was nothing that you could do to prevent your birth experience from going the way it did. Nothing. This is a great article describing some of the most common pregnancy complications, and how despite how much progress has been made in the business of caring for premature or medically complex babies, the medical community still doesn't know exactly what causes these things to happen. Yes, there are risk factors that can lead to complications. However, most of these risk factors are not things that you can avoid. We often hold the assumption that the medical community has expert knowledge of all ailments we might face. Unfortunately, even though so much valuable research and progress has been made in preventing pregnancy complications, many elements are still little understood.

     2. Be aware of cultural attitudes that may be causing you harm.

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All too often in our society, the unexplainable is not accepted. I was shocked when reading through comments on articles about the World Health Organization's recently released infant mortality and prematurity statistics, to see that many individuals who had never experienced anything remotely like preterm birth had pert answers as to why they felt infant mortality is still an issue in the U.S., offhandedly blaming mothers and families for their own tragic circumstances. Try to shield yourself and your family from these kinds of attitudes, whether in the media or in your own community. When someone asks "What did you do that caused this to happen?", redirect them to the research that shows that you did nothing wrong. If that attitude persists, set a boundary with that individual to protect yourself.

     3. Develop a sense of loving-kindness towards yourself.

This is the tough one. How can we move ourselves from a place of guilt and shame to one in which we hold compassion for ourselves and what we are going through? One trick I learned through my own experience was to try and imagine myself from another person's perspective, even my babies' perspective. What might that other person see? Was I doing the best that I could given my current set of circumstances and the knowledge that I had? If I had known some way of preventing this event from happening, would I have done it? By looking in from the outside, sometimes your strengths and values become more apparent. When you start to see and identify your strengths and values, you will also start to develop the ability to grow loving-kindness for yourself. If imagining yourself through the eyes of another person proves to be difficult, start by using affirmations (it's simple to google free affirmations; peruse them and sort out a few that resonate with you). Simply repeat the affirmations either silently or out loud multiple times a day. It may feel alien or strange at first, but sometimes going through the motions of self-reassurance can jump-start the process to reaching the "real" thing.

     4. Promote loving-kindness of the self in your partner.

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Your partner (or other individual who provides you with significant emotional support) will likely be mired in the same struggle with guilt and shame that you are experiencing, even if his/her struggle looks completely different from yours. When coping with a trauma together, try to be gentle with your partner. Remind them of their strengths or the things that you appreciate about them. Check in with them about how they are coping, even if it seems like you've already addressed all the issues together. In doing these things, you will set a precedent of support in your relationship, and create a space in which you can address the various stresses you're both facing.

Shame and guilt are oftentimes the uninvited guests to an already traumatic event. Allowing these emotions to take over can increase your risk for developing acute or post-traumatic stress disorders (Barr, 2010; Harman & Lee, 2010). If your sense of shame and guilt is so overwhelming that you feel powerless against it, it may be time to seek out counseling.

As our neonatologist continued in the conversation that day, he told us his NICU experience spanned decades. He told us that if the birth were our fault, he would surely tell us. He told us he almost never saw patients that had done something that "caused" their pregnancy complications. He told us that tons of research is being done to prevent this very thing from occurring. That if they could resolve preterm labor and other reproductive complications, that he and his colleagues would be unemployed. "Happily unemployed." His words resonated with me. In fact, for months I would deliberately replay what he said in my mind when I started to develop new theories of why our circumstance was all my fault. To this day, I feel gratitude for what he said.

References

Barr, P. (2010). Acute traumatic stress in neonatal intensive care unit parents: relation to existential emotion-based personality predispositions. Journal of Loss and Trauma, 15: 106-122.

Harman, R. and Lee, D. (2010). The role of shame and self-critical thinking in the development and maintenance of current threat in post-traumatic stress disorder. Clinical Psychology and Psychotherapy, 17. 13-24.

Leskela, J., Dieperink, M. and Thuras, P. (2002). Shame and posttraumatic stress disorder. Journal of Traumatic Stress, 15:3. 223-226.

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.

Attachment in the NICU; or Contending with Cuddlers

One of the more confusing yet heartbreaking moments I had when Elliott was in the hospital was when I walked in to see him when he was closer to term, in the PICU,  and just a week from coming home (although I didn't know it at the time);  he was being held and rocked by a hospital volunteer, a "cuddler". Emotionally I felt a burning inside, a proprietary feeling over my son, and the feeling that "I have yet another person I have to ask to hold my son?"

It was a moment I had to analyze later, after I'd gone home, because I felt conflicted about it. After all, how awful for me to get angry or sad because someone else was holding my baby. These volunteers were there out of the kindness of their own hearts, and made it so Elliott could be held even when I couldn't be there. That was a good thing, right? I wanted for him to experience human closeness; if he had been a term baby and able to go home right away I would have been holding him all the time, wearing him, giving him all kinds of physical affection. Wasn't a cuddler, holding Elliott when I couldn't be there, the best possible outcome considering the circumstances?

At that moment I realized the extraordinary sense of loss that I was feeling, that many NICU moms feel. Not only had I lost my third trimester, my sense of safety and predictability, and many of the hopes that I'd had in having babies, I was also losing my sense of feeling like Elliott's primary caregiver, like the person he felt most attached to in his world.

Of the many stresses facing parents when their child faces a NICU stay, the notion of attachment, or how you will become psychologically "attached" to your child, may be one of the greatest. It's difficult to imagine what your attachment with your baby will look like when they are inside of a plastic incubator, separated from you, and at times too tiny and medically fragile to hold. It can be devastating, particularly as a mother, to be discharged from the hospital with empty arms (and empty belly), with days, potentially weeks ahead of you, in which you will be separated from each other. Discharge from the hospital can be in and of itself a stressful event for parents, as it symbolizes a descent down the "tip of the iceberg"-- and into an unpredictable future in which your child will be hospitalized, and, in most cases, separated from you.

In the beginning of the NICU experience, it's challenging to cope with the idea that for the next days/weeks/months, you will most likely need to ask permission to hold your baby, you will require assistance and training to complete many tasks (even diaper-changing), you will need to make decisions regarding your baby's health without ever having had any experience with said issues.

All of these things can have the effect of making you feel almost as if your baby isn't yours, but rather a permanent ward of the hospital. It can also make you feel as though you don't play an important role in your child's care, especially when your child is especially medically fragile and reliant on various medical interventions to survive. As such, anger, grief and resentment can sometimes burst out in unpredictable ways, even towards people like Elliott's cuddler, who was giving and kind, but happened to symbolize a whole world of frustration that my baby wasn't home with me.

Parents have reported feeling angry, sad, afraid, anxious, and frustrated, amongst other things. There are many effects that all of this can have on the psychology of parents, but the underlying issue is that having a baby in the NICU feels very different than having a  take-home baby for whom you provide all care, and requires an adjustment of your perception and beliefs. Luckily, finding resources and support can help you articulate the grief you might be feeling, and promote moving forward without that resentment.

We had a few moments in the NICU, and many more after discharge, where I realized that my attachment with Elliott likely wouldn't be damaged by his NICU stay and separation from his parents for three months. The theory behind attachment is that it's somewhat like a dance, and the patterns that you develop in a partnership are important to nurture and repeat over time. The loss of that initial caretaking/parenting experience, in other words, doesn't mean that it will never happen when your baby has to have a NICU stay. But I sure as heck wouldn't have told myself that fact the day I walked in to find my son in yet another (sweet and caring) person's arms at the hospital and was ready to pull my own hair out.

I'm wondering if this resonates with other readers... Did you, in your experience, ever have a circumstance in which you became angry or resentful with someone that in your "logical" mind you were incredibly grateful or happy to have around? Did the NICU experience force you to feel less attached to your baby (at least for the time period in which they were hospitalized)?

Two Years Old!

Elliott is two years old today! I can't help but want to shout to the world how amazing it is that my son-- my son whose whole world was put on an unexpected and unpredictable course that made no promises regarding his survival, health or future functioning-- my beautiful son is two years old, doing incredibly well and he is taking the world by storm.

I only wish I could have visited myself in a dream two years ago to tell my two years ago self that things would be okay. Not what I expected, but okay. I wish I could have given my husband and I a break from the anxiety and, at times, terror we experienced, and endowed us with some kind of faith that someday the experiences we were having would be memories; that life wouldn't always look the way it did back then. 

Preemie parents have a unique perspective of these kinds of milestones, since during the first part of their child or children's life everything seems precarious, like it could all be taken away. It makes it that much more powerful to witness your child laugh for the first time, celebrate their first birthday, take their first steps, utter their first words, even getting over their first cold when you have seen them in an incubator hooked up to wires and tubing and so tiny they can fit in the palm of your hand.

These milestones also oftentimes bring up ambivalent feelings; the memories of my birth experience and of the first few days' of my sons' lives, the loss of William a week afterward, the pain in remembering the loss of my third trimester and having to see my babies in an unnatural space instead of feeling them in my belly, the memory of them struggling to survive because they lost that time inside, the memory of the self-blame and alienation I felt from almost everyone I'd ever known. 

It's hard to hold all of those feelings at once; Elliott and William's first birthday was challenging for me because of the storm of emotions that were clouding my head. It took a long time for me to develop a sense of peace, an ability to surrender to the unknown and to trust that things would be ok even if they aren't what I expected, to understand that I could survive even in the face of immense change. 

Today was one of the first celebratory days that I could genuinely celebrate, and to see my beautiful boy playing with his new toys with a huge smile on his face without having lingering memories of trauma pulling me away from the present moment, that made it one of the best days of my life. 

How have milestones like the birthday of your baby worked out in your family? Have you found yourself able to feel genuinely happy, or is there an element of feeling bittersweet regarding it?