I spent most of my career working in the Newborn Intensive Care Unit. I’ve always been drawn to the medical field but never had the wherewithal to endure all of the science classes to become a doctor or nurse. If I’m being really honest, it makes my stomach turn when I think about handling someone’s bodily fluids or having to stick them with a needle. But I loved the idea of helping people through their experience in the hospital which lead me to becoming a child life specialist. Add my infatuation with babies and I found myself in the NICU. I was there to support families through their NICU journey and provided parent education, sibling support and partnered with the NICU staff in developmental care for the babies.
I was an advocate for family-centered care. That particular philosophy always struck me as an oxymoron in healthcare. People, at their most vulnerable times, have to entrust their lives to complete strangers. Strangers, who by the very nature of their profession, are caring individuals. But, somewhere in the business of healthcare, the person gets lost. And thus, family-centered care…a team approach to caring for a person that also empowers the patient and their family…became the catchphrase for healthcare to do what they should have been doing all along.
Anyhoo…I started my career with gusto. I naively assumed that the medical staff would be interested in doing whatever they could to promote a sense of family in the midst of a unit that was a whirlwind of activity with row after row of critically ill infants. I was dumbfounded every time I had to ask if a parent could hold (or even touch) their child. Shocked when I saw post c-section moms sitting on a swiveling office chair crammed between all the medical equipment and beds. And bewildered when I would walk into the unit, where research encouraged us to provide a healing, quiet environment, to country music blaring at the bedside, lights glaring and the staff chattering away about their weekend.
And I’m not saying that I never found myself getting caught up in the pace of the unit…doing the very things that irked me so much for the sake of not being the squeaky wheel all the time. It was a catch 22. Fit in with your team? Or be the outsider, the one they all rolled their eyes at when you walked away.
But ultimately, I was passionate about my purpose in the NICU. I wanted desperately to see these new moms and dads connecting with their child and be considered an expert in their care. So I pushed the staff to slow down. To find opportunities for families to be involved in their child’s care. To put themselves in the parent’s shoes and consider what it would be like to have a foreigner doing all the things a parent wants to do with their newborn…intruding on one of the most precious of times. Pushing them to find ways to partner with families instead of making them feel like unwanted visitors. Being mindful to not let the monotony of work creep into their ability to be empathetic to the very people who created the patient that they were laboring over.
I grew jaded after years of fighting for “common sense care.” Changes came at a snail-like pace and I couldn’t stand up to “The Resistance” any longer. Reluctantly, I abandoned my post…the families and their babies. I was worn down and angry.
I virtually swore off Western medicine…opting for natural remedies, acupuncture and going to the chiropractor. I was determined to do everything in my power to stay away from hospitals. So when I got pregnant, I chose to go to a birthing center because it aligned with my need to have a natural experience and wanting my voice to be heard. And I received excellent, supportive care there throughout my pregnancy. I felt empowered to make decisions for myself and my baby. I felt surrounded by providers who listened and valued my opinion and experience. It felt right.
When I was twenty-six weeks along, the midwife heard a slight murmur during an ultrasound. She calmly explained what she was hearing and presented the choices we could make for our baby to ensure that everything was ok. When the murmur persisted at our next appointment, she was supportive when we opted to make an appointment with a perinatal specialist and even offered to go with us. At no time did we feel rushed in our decision. And we know now that our choice to wait it out for a couple weeks ultimately gave our son a little extra time to “bake” so he could endure the battle that was ahead.
The day of our appointment with the specialist we also had our regular appointment at the birthing center. I remember walking out the door that morning, patting the dogs on their heads as I was leaving. I commented that we had a big appointment that afternoon to make sure “brother” was ok. I *might* have asked them to say little prayer. I had no idea what was coming…
We went in that morning for our group appointment, eager to learn more about taking care of our baby along with how to bravely face our labor and birth. At the beginning of each appointment, the group gathered in the birthing center’s living room. We would visit while we each took turns with the midwife who checked our measurements and listened to our baby’s heart. Everyone was excited to be on the final leg of our pregnancy journeys…just ten weeks left! We eagerly shared favorite names we were considering and talked about our baby registries and upcoming baby showers. It was hard not be excited about the big changes we faced! However, in the back of my mind (and my husband’s mind) was the appointment looming that afternoon. Would the doctor confirm the midwife’s assessment and give us the go ahead to stay at the birthing center? Or would he find something bigger? And if he did…what would that mean for us? For our family? For our baby?
We stepped away from the group’s chatter for our turn with the midwife. One minute, we are happily visiting with the group…the next minute, we witnessed the midwife’s face turn ghostly as she strained to count our baby’s heartbeats. She calmly told us that his heart rate was low and asked when we were supposed to see the specialist. Nervously, we explained that it was scheduled for 3 o’clock that afternoon. She reassured us about our decision to see the specialist and mentioned that she was just going to give his office a call to see if we might be able to go in earlier that day. In a fog, we returned to the group while she phoned over. Seconds later, she popped her head in on our group and waved us over. She told us to head over to the hospital down the street and that the specialist would meet us at labor & delivery.
We blindly walked into the hospital at 10:30 that morning, never fathoming that we would be facing the most terrifying experience just a few short hours later.
It was like an out of body experience. Here I was, in the very place I didn’t want to be. And as the labor & delivery staff whirled around us, I could hear myself calmly saying to the nurses, “no, I don’t want to change into a gown yet” and “I’d like to see a doctor before you to start an IV.” Without intending to, I was “child life-ing” for myself. Insisting that the staff slow down until we had some answers. I was diplomatic, but I demanded they treat me like an individual, not just checking off their admission list.
Since I had worked in the hospital setting, I knew what this flurry of activity meant. No one would come right out and say what was happening, but my gut was telling me to gear up for the worst. Deep down, though, I was also eerily peaceful. I knew, without a shadow of a doubt, that God was right there. I might have shook my fist in His direction when reality hit. In hindsight, though, I have to give Him a nod because He was also using all my experiences in my career (good and bad) to prepare me for such a time as this. He had this covered and I could not doubt, in that moment, that He had already orchestrated every moment of my son’s life up to that point and was not about to stop now.
In honor of Prematurity Awareness Month, I will be sharing our son’s birth story. I hope it inspires those who have gone through it to see the raw beauty in their own experience. May it also be a reminder to those who provide care in the NICU that they are joining a family in one of the most traumatic, beautiful, heartbreaking, and treasured times they will ever experience.