Guest Blogger Rachel Sweet: This Is Your Story Too.

My job has never really been easy. I am a social worker in the Neonatal Intensive Care Unit in one of the nations top ranked hospitals for neonatology. We have a level IV NICU, meaning the care we offer is of the highest degree for infants who are born ill or premature. It has been interesting to reflect on my experience of working in NICU from pre-motherhood to post-motherhood. The experience has certainly shaped me as a mother and a social worker, and even though difficult, I couldn’t be more grateful.

I personally struggled with anxiety during my pregnancy, specifically around what I knew could be devastating news at my 20-week ultrasound. After learning that I was carrying a healthy baby, as far as we knew, my anxiety manifested into thinking about the delivery, knowing all too well what could happen during birth that could lead to a NICU admission or worse.

I decided not to create a birth plan. My assumption was that a birth plan was not important because in the setting I work in events rarely go as planned. I was also delivering in the medical system I am employed; a system I trust. I delivered my baby after 24 hours of labor, being induced, and having an emergency C-section. I was devastated and extremely disappointed with how things went. I was scared to death and felt I didn’t have a voice or the respect I deserved from my medical team. The days following my birth I was so emotional. I didn’t want any visitors, I could barely talk about my experience without crying, I was so upset. All I wanted to do was be left alone. I felt an obligation to protect my baby from the over stimulation that often comes at the time of birth.

I thought to myself, “How can people not have any idea how much I am struggling here?”

I cried the entire way home the from the hospital. All I kept thinking is – here we are, bringing this new life to our home. He didn’t choose us, he didn’t choose this new house, or his bedroom. Does he even want it? Is he going to be happy? Are we enough?

The crying and feelings anxiety didn’t stop for a while. I quickly engaged in an online local support group. I soon learned that what I experienced during my labor was considered a trauma- and there were other moms out there with similar experiences. I needed help- and sought out a recommended therapist in my area. I was able to realize an additional stressor was how overwhelming it was keep up with notification from social media, text messages, phone calls, and visitors. Even the thought of posting a picture of my baby on Facebook was stressful. I felt like in doing so a piece of me was being exposed. I honestly wanted to unplug.

As time got closer to returning to work I was devastated. The thought of it, even seeing the work email icon on my phone, gave me a deep gut reaction. It was one of nervous pending doom. Three months was not enough time. There were still too many raw anxieties- about literally everything. My husband told me several times he was going to disable Google so I couldn’t research anything. But I did anyway, which led to more anxiety, and more, and more. I don’t know how mothers do it. There is so much information out there. The minute you read one thing, there is something else telling you the complete opposite. Sometimes these differing opinions come from those we trust and we are left trying to figure out what’s best.

I understand this is only my own experience. But, the bottom line is that if I, having a healthy baby, a great support system, access to resources, can feel this alone and anxiety prone, how in the world do the moms feel who may be experiencing all of this, on top of having their child admitted to the hospital?

I can’t imagine having a baby in the NICU. Frankly, I am so happy to have a healthy baby and also really scared have another one- a mind wrought with anxiety about what diagnosis I know is possible, being more nervous than usual about what I know can complicate an otherwise perfect delivery. I am certainly not naive to think I can begin to know how it actually is to be a mother of a baby needing hospitalization; however, I hope that I am even just an inch closer.

So, how has this changed my view of motherhood? How has it enhanced the work I do? It’s honestly difficult to describe. There is something about seeing another baby and being able to relate the sights, the sounds, and the smells to my own. There is something about watching a baby latch that brings tears to my eyes. There is more meaning behind seeing a mom do skin-to-skin with her child. There is a greater empathy for how empty it feels to not be able to hold or feed your baby for days, weeks, or sometimes longer.

During the second half of my pregnancy it became very clear I was working with mothers who had babies the same age as mine. However, mine was still in my womb and theirs wasn’t. I found it awkward at times to support moms with premature babies; I dealt with feelings of guilt for still being pregnant. One thing I realized, though, is that many of the moms wanted to ask questions about my pregnancy, etc. What I learned is that despite the circumstances, there is a connection in motherhood. There are just some things only mothers can understand. I now try not to shy away from talking about my baby if asked. In the back of my mind I will always wonder if in some way if it might be painful for the parent to talk about. But I also wonder for that parent if it allows a small break from reality, offers hope or excitement for the future, and a way to find connection.

Unfortunately, I can’t ignore the fact that birth stories have been rarely discussed in my interventions with moms.

More specifically, how a traumatic birth might add additional layers of stress and anxiety to all already overwhelmed mother. I am trying to ask the questions, the ones that before were not so obvious. I also strongly encourage moms to assign a point person to pass along messages for parents. This allows parents, especially moms, to enjoy and engage their baby, despite their circumstances, versus being the one to support others in their own distress or excitement.

The little bit I have discussed here does not even begin to touch the magnitude of the pressures NICU moms face. It’s so important to discuss this so at least, if anything, moms can feel they are spending their time in a meaningful way with their babies. Time without the guilt of not doing what they (or others) feel they should be doing. In my experience, the moms I work with already feel guilty enough.

There are so many things I was convinced I would not do as a parent. So many ways I thought I would feel. It’s interesting what actually being a parent does to some people. My baby co-sleeps with me and my husband; it’s one of my favorite things and I don’t know how any of us would get sleep without it. We are also planning to do Baby Led Weaning, which elicits several questions and sometimes scrutiny from people who are less familiar. We have decided not to take the advice of our pediatrician at all times, relying on our instincts and research, to help us make the best decision for our family.

For now, I am just going with the flow and learning to trust my gut. I don’t care too much about making it to every single event we are invited to, about having busy weeknights and weekends, about taking advice from just anyone. Down to my core I want peace, quiet, connection, prayer. I am grateful to have learned that these basics are really all you need. Sometimes, for the NICU parents, these basics are all they have.

This line of thinking has encouraged me to turn off notifications on my phone, say no more often, follow my instincts as a parent, seek advice of only those I trust, and genuinely pursue the bond with my baby and my husband. My family is taking a step back and I couldn’t be happier.

Photos courtesy of Rachel Sweet


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