Every November, Prematurity Awareness Month, I reflect back to the moment my husband and I joined a group of parents few voluntarily join. The moment we became preemie parents, more accurately micro-preemie parents, welcoming our daughter into the world fifteen weeks ahead of her due date. Each year at this time, I find myself turning inward, contemplating all that has transpired for our family. From not knowing how to respond to the congratulatory messages following her birth, to amazement on the progress she has made in a relatively short period of time.
The truth is that the journey of prematurity only begins at birth. Often complications arise along the way, sometimes not making themselves known for months or years later. No two preemie paths look the same, so I do not aim to represent all families that have experienced a birth ahead of term. Rather I hope to demystify the experience, and encourage others along the way. While largely I speak from my vantage point, it is important to recognize that having a medically fragile child (term she was given) impacts all members of the family in different ways. There exists a carryover to relationships, friendships, financial matters, and even self-esteem. Everyone responds to such stresses in different ways, and will process information differently.
As I started to think about our experience, several words came to mind. They all had one thing in common; they start with the letter “P”. This is reminiscent of my MBA Marketing class at the Carlson School of Management, and the lesson on the 4P’s of Marketing: product, price, place, and promotion. While the exact “P” words may be different, there is finally a remote link between my business background and current title of preemie mommy!
I will not go into great detail on the physical pressure that exists when a baby is overly anxious to make its arrival into the world. Instead, lets focus on the figurative aspect of the word. As a mother, there is no greater instinct than to protect your child. With that comes a lot of pressure both from external factors, and internally as mother guilt begins to form. For me this was exacerbated by the likelihood of a premature birth. Surely there was something I did wrong, something I could have done differently during this pregnancy to ensure I made it to term. I scoured every detail of the past couple of months to figure out where I took the wrong turn. Rationally I knew there was little I could have done to prevent this. The reality is that this pregnancy was challenging from the start. Still, in my black and white mind there had to be a cause, and certainly that cause would trace back to me.
Additionally, there is a great deal of pressure on those caring for you. You can feel it the moment you walk into the exam room. I will never forget the mix of joy and terror when we walked into the Labor & Delivery wing of Maple Grove Hospital at just 22 weeks gestation. We were familiar with the L&D ward, having delivered our first daughter there three years prior, but this time the emotions were different. The unease from all those who cared for me was palpable. Surely it would turn out to be nothing, just something I ate, but further tests confirmed we would likely meet our baby girl sooner rather than later. The goal being to make “sooner” as far down the road as possible. The three additional weeks she was able to develop were incredible, moving us across the line of viability. It is only now, that I am able to acknowledge that even though 25 weeks is certainly better than 22, both mean she missed an entire trimester in the womb.
It also means that a specialist, rather than my regular Obstetrician, delivered our baby via C-section. All preconceived ideas we had about her delivery quickly went out the window. I will not pretend I am one to draft a detailed birth plan. I learned the first time these things rarely go as planned, but we did have visions of a peaceful birth, with family waiting outside. That is a far cry from the surgical delivery that transpired with a team of doctors and nurses on hand to tend to both our little girl and me. Thankfully, the Twin Cities is home to wonderful medical facilities, and we were reassured by being in one of the premier Neonatal Intensive Care Units (NICU) in the country. This specialized team was accustomed to such pressure, so they took some of the weight off our shoulders.
We were fortunate to meet with a member of the NICU staff at the University of Minnesota Children’s Hospital before surgery. The nurse worked to offer a glimpse into the road ahead. In addition to the logistics that would follow, it was helpful to hear the number of scenarios that could transpire. It served to remove the element of unknown in the operating room, as a team of medical professionals attended to a baby I had yet to meet. Admittedly, we did not appreciate the symphony of care that is a Neonatal Intensive Care Unit at work until we welcomed a one-pound, 14-ounce baby into the world.
Entering the big double doors leading to the NICU often felt like entering a different world. Despite some familiarity with hospital settings, the rhythm of the NICU felt so foreign. Strict hygiene guidelines accompanied set visitor rules to keep the fragile babies safe. That meant that our older daughter would not be able to visit her little sister, apart from a brief introductory visit, until the conclusion of flu season. At times, that was hard to absorb, another contradiction to the vision of her birth I mentioned above, yet turned out to be a blessing. We actually did not tell her she was promoted to the role of big sister for over a week after her sister was born. That allowed time for my husband and I to digest the reality of our daughter’s condition before trying to explain it to our toddler in a way that she would understand.
In the end, Mom and Dad were seemingly more perplexed by her baby sister’s new home than big sister. She was so excited to see the baby, that she hardly noticed the machinery accompanying her sister lying on Daddy’s chest. As parents it was difficult not to focus on the equipment as stressed over every detail of her care. Not due to a sense of uncertainty for the staff, but rather because the machines and language were so foreign. Rounds served to provide a daily update on each baby, yet I only tracked maybe one word out of ten in early discussions. Not sure we would have survived without our team of core nurses that methodically translated each detail, and reassured us along the way.
The nursing staff is the heartbeat of the each nursery. At first the setting feels sterile, like you are out of place visiting your own baby. I remember sitting by the incubator in the early days unsure of what I could do for little girl. It was so unnatural to rely on the expertise of others to care for her, rather than my own motherly instincts. In fact, I no longer trusted such instincts. Dare I say, I was afraid of my baby? She was so tiny, not much larger than my hand, and in such a fragile state that I worried any wrong move could cause irreparable harm. With the support of our primary nurse, we slowly grew more comfortable doing her cares, and holding her when able. Kangaroo Care, in which she was placed directly on our chest, became cherished opportunities to connect with our little girl.
Such connection was the only thing that felt “normal” in the early days. It is unnatural to leave your baby behind when you are discharged from the hospital. That fifth day, as I did so, I was aflood with tears. Yet, I had to leave her there. Then, I did so most days for the next couple of months, until eventually it became normal. Our new normal in which I spent the day with our baby, and evenings at home as an incomplete family. The goal was to keep things as normal as possible for our three-year-old. Yet, every moment I was riddled with guilt on where I was needed most.
In time, the place that first seemed so foreign began to feel like a home away from home. My thoughts were consumed by oxygenation percentages, Hemoglobin levels, and daily weight checks. Three months in, the NICU became more familiar than the world outside the hospital. Outside these walls life continued at a pace I no longer recognized. The staff became like family, and other NICU parents a built in support system that understood concerns otherwise too difficult to explain to those who haven’t shared in the experience. It wasn’t until this new support system was coming to an end, and discharge was on the horizon, that panic set in.
Panic reared its head as I started to let my guard down. For so long discharge felt like a distant goal, that adrenalin helped to survive the present. When a baby is born as prematurely as our daughter, your due date is a reasonable expectation for discharge. Keeping my expectations in check served to ward off the initial panic, but as the days wore on it slowly made its way into my thoughts.
You do not have to look far in a NICU, or entire Children’s Hospital, to see the fragility of life. So my approach was to almost detach myself from the situation. It was not a difficult task given the natural separation from my baby girl as she lay in her incubator. I hate to admit it, but it took time to bond with the little girl we so dearly loved, yet were too scared to get too attached to should her life take another course.
As discharge became a reality, I found my expected joy was coupled with anxiety. A sense of comfort accompanied her NICU stay that would not exist at home. No longer would I have the support of doctors and nurses should something go wrong. While my husband and I were confident in our parenting skills (we at least had one practice run with our first daughter), this was parenthood mixed with a bit of medical skill both of us lacked.
I vividly remember getting home from the hospital, and panicking come the first feeding time. Where was the recipe (yes recipe) for her bottle? How would I get the mixture to the exact temperature she preferred without the magic bottle warmer they had at the hospital? Cue the panic. Both were easy problems to solve with a clear mind, but overwhelming after relying on others for so long.
Little did I know that feeding would remain a major concern in the months ahead. Today it is our main focus of her care. Not from the basic nutritional aspect, but rather to improve the skills and coordination she never had the opportunity to gain in utero. She has made great strides with frequent occupational therapy appointments. We are so thankful for the early intervention programs that help us tackle any developmental concerns before they escalate. I now recognize the basic milestones I took for granted with my first daughter. With a preemie you have to practice patience, and allow them to develop on their own terms. It may take longer to get there, but she continues to amaze us with her progress.
Expectations for your own life also have to be met with patience. Discharge from the hospital did not mean a green light to resume life as normal. Quite the contrary, as great efforts must still be made to limit our daughter’s exposure to germs. Days are spent inside, largely free of visitors, apart from close family and medical professionals. I have taken an extended leave from work to prioritize her health knowing that her premature lungs are not yet strong enough to ward off infections.
Her two readmissions to the NICU were a sobering reminder as to why we have made these drastic changes to our lives. Only two weeks after our initial discharge, we found ourselves back in the hospital for several days when she caught a cold. With a preschooler at home it was impossible to keep her fully isolated, but we did our best. Contact was limited, hands meticulously washed, and yet she still got sick. It was so difficult to watch her suffer, taking steps backward, and yet embarrassing at the same time. How could her own parents not keep her healthy? A second hospital readmission a few months later served to underline her fragility. A nearby cough or sneeze continues to elicit a sense of anxiety only other parents of immunocompromised children can understand.
Through all the pressure, perplexity, and panic, the overwhelming emotion is passion. A love for another human so deep that it is impossible to put into words. These little fighters have faced more than many of us have in a lifetime. As we look forward, the goal is to channel such passion into positive moments for our daughter. The road is not always easy, but we are blessed by the knowledge that miracles do exist.