Navigating Life after Premature Birth
Learning to live in the moment with the unexpected
When my son was born eight weeks early without explanation, I spent days, weeks and now nearly two years wondering what went wrong, did I do something to cause this, how could my body fail my child? The calmness I felt during labor, left the moment I met my baby tethered to the machines that were keeping his tiny body alive. I watched as doctors and nurses attended to him, watched as strangers handled him, heard someone say he had a brain bleed and was awestruck by the tubing and wires all over his body. This was the NICU.
My eyes welted with tears, my body ached and not from birth, but from the sight of my son fighting for his life, from the realization this was how life met him, these were his first moments and they were so awful. This was nothing like what I read in the baby books about holding my newborn on my bare chest to provide comfort to him, about helping him nurse those first few days, about those warm and irresistible baby snuggles. No, this was the stuff of nightmares, the really scary ones that leave you gasping for air and too scared to go back to sleep.
My husband Niclas and I decided to name our son Ludwig (pronounced Lude-Vig) for its meaning, which is famous warrior, certain our baby would put up a good fight. I stared at him through an incubator wondering who he was, would he survive, did he have brain damage from his bleed and from the minutes it took the hospital staff to get him hooked up to his CPAP machine? Was he sick? Could I hold him? Was I allowed to touch him? Will he come home?
It was the end of 2019 and Niclas and I had just completed our Master’s the year before while living overseas in London. He is from Sweden, me the United States, neither of us had family living near us. Once they were able to, each of our mothers flew in to support us for a few weeks, but when they left and with my husband only having two weeks of paternity leave, I was lost and overwhelmed. I did not know who to be or what to do, I did not know how to be a mother when everything I read and thought I knew about mothering left the moment Ludwig was born.
For the next few weeks I kept a routine: Wake up at 6 a.m. Take an Uber, arrive at the hospital at 7 a.m., pump every three hours, disinfect pumping parts, label and store breastmilk, check in with doctors during morning rounds. If I missed the morning rounds, there was no way to speak to a doctor again until the following day. And it was absolutely imperative to speak to the doctor every morning to find out what improvements or setbacks happened overnight, what the next course of action would be if any. Eat at 1 p.m. in the cafe. Attempt to do at least one round of skin-to-skin with Ludwig when I was allowed. Stand, sit and stare at Ludwig every minute of the entire day wondering what was going to happen and try not to get too attached to him in the case we wouldn’t be bringing him home. Coffee break at 4 p.m. in the cafe and back in the NICU until 7 p.m., sometimes midnight. Before leaving, I would check all the breastmilk, do the calculations based on his feeds that were provided through an NG tube and ensure it was enough to get him through the night and next morning. Take an Uber home, but on occasion we were lucky enough to have a kind couple from our pregnancy group pick us up and take us home. Then it was back to sanitizing EVERYTHING and repacking a bag for the following day. With my husband’s help, this usually took about two hours. Frozen dinner, then back to bed to wake every three hours to pump, store and sanitize pump parts for the morning. This went on for weeks.
I can still hear the machines beeping in my head and see Ludwig’s monitors that either induced calmness or panic in me depending on where his oxygen and heart rate sat. I remember the pit in my stomach I had the first time I realized I was in a room filled with babies and none of them cried. It was a place where sadness and happiness coexisted in every moment, a place where I learned to focus on getting through the minutes rather than the days.
At 21 days of life, weighing 4 pounds, we were allowed to bring Ludwig home. He struggled to breastfeed and to take a bottle, suffered from apnea, and was brought back to the hospital seven days post discharge in the middle of the night via ambulance as we were unable to wake him. A NICU nurse visited me at home every two days to check on him which usually sent my stress levels through the roof as it was never good news- he wasn’t gaining the weight he needed to gain. Ludwig was diagnosed with “failure to thrive” at just shy of two-months-old, which also happened to be his due date.
I gave him prescribed iron, vitamins and other medicines orally and later on learned how to apply oxygen to him for his overnight sleep. He required feedings every 90 minutes for the first four months because he was unable to take more than a couple ounces of breastmilk at a time. I had to constantly adjust the radiator in our flat to accommodate for lack of heat during the chilly winter months as he was also unable to maintain his body temperature. The nurses in the NICU taught me how to check his temperature and originally I was told to do this every 30 minutes if it was low, which it always was. This went on for weeks and weeks on end at home until he was able to gain enough weight to hold his own heat.
That first year is one I will never forget, the pain still stings fresh in my mind and body. We went through hell and back, there were times I truly thought I just cannot do this, I am not a nurse, I am not cut out for this. But eventually, we found our rhythm and the peace we needed to guide us through this journey.
We eventually decided on moving back to the states to get the support we needed both medically and by family. After a few appointments at our new hospital, it was discovered that Ludwig had weak muscle control in his throat region making him unable to swallow, breathe and suck effectively and that he suffered from Primary Central sleep apnea, Obstructive sleep apnea syndrome along with hypoxic episodes.
Central sleep apnea is an extremely rare form of apnea caused by a brain malfunction that prevents the proper signals from being sent to the muscles that control breathing. Research shows less than 1% of the population suffers from this form of apnea. Because of this, Ludwig sleeps with oxygen and a pulse oximeter at night. At nearly 20-months-old, he will be attending his fifth overnight hospital stay to evaluate if his brain is still malfunctioning and causing him to stop breathing.
He has had occupational therapy, swallow therapy and is enrolled in speech therapy through our local Early Intervention program. It has not been easy and I can’t help at times mourn the life without so much worry and fear I thought we would have before he was born.
After spending countless hours reading research and Googling everything imaginable about prematurity, I now know that it is defined to include any baby born before 37 weeks gestation. It is the leading cause of neonatal mortality and the most common reason for women to be hospitalized during their pregnancy, according to March of Dimes. One in 10 women will go into premature labor, many without any reason at all- I am part of the one in 10 club. Some preemies’ hospital stays are one day and some are one year, some of these babies have life-long debilitating disorders, some none at all, some of these babies come home to their family and some never see beyond the walls of the hospital they were born in. Every single outcome is different, every single journey is unique.
I have had time to digest and reflect on this journey and appreciate all that it has afforded me. Having a preemie was like going through a crash course on motherhood, medical school, learning to be OK with always being out of control and the ultimate test of patience. My son has become my real life superhero. He’s barely made it to the toddler years and he has already taught me so much. He encourages me everyday to try harder and to be better. Ludwig forces me to learn how to live in the moment and to cherish every single second of life because we really never know how much of it we will have and to a certain extent we just cannot control the future. We can’t. No matter how much I worried, Googled, fed him healthy food, I couldn’t fix whatever it was that was causing his issues. I just have to be there to meet the moment and to meet him where he is at. And guess what, he is absolutely perfect- he always has been. I celebrate him now as he was and as he is, I celebrate his prematurity and everything it has given me.
