Our Preemie Journey

I remember sitting in my prenatal classes as we were discussing birth plans thinking about what that day was going to be like for me and my husband. Anyone who knows me will tell you that I am a planner. I like to be prepared for any and everything and generally expect things to go according to my plans. Knowing this about myself and knowing how little control I was likely to have when it came to my son's birth, I figured my best plan should be "don't have a set plan." That way, I couldn't be disappointed or caught off guard when it didn't go the way I expected. Looking back, this was probably the single best decision I made, and perhaps best possible way I could have prepared for what actually happened.

February 2nd seemed like a pretty normal and uneventful day. I had just hit 32 weeks and my sciatica was finally feeling a bit better. Things were crazy at work, but I was able to sneak away for a quick lunch with an old coworker. That day was one of those "wintery mix" days, where there was a thin layer of slushy ice everywhere. On my way back from lunch, I slipped on the sidewalk and fell straight forward. More shaken up than anything, I was thankful that my arms and coat had braced most of my fall. Nonetheless, being the risk averse person I am, I decided to call my doctor to double check. To be safe, she suggested I stop by the hospital for some routine monitoring--just to make sure nothing had happened.

Thinking nothing of it, I went straight in and let my husband know I'd probably be home just a little later that night. To cut a very long story short, as I was being monitored, my baby's heart had a deceleration (heart rate drop), which was pretty concerning. The doctors and nurses decided to keep me over night, and one day turned into 5 days with long periods of everything being normal to sporadic dips in my baby's heart rate. At first, my doctors told me we needed to wait 24 hours. Then was the idea that I might be on bed rest for a month, before I delivered. Then the thought that they wanted to get me to 35 weeks. Then, just 34. Then the notion that I needed to go ahead and consent for c-section now, because there was a chance that could happen at any time. On February 7th (at 33 weeks), after another heart deceleration, my doctor rushed in to tell me that it no longer made sense to wait--there was someone in the OR at the moment, but in 20 minutes, they were going to deliver my baby, ready or not. I remember shaking as she rubbed my back and calmly walked my husband and I through the procedure. My husband says I was unbelievably calm and strong in that moment, but all I remember is being so scared for my baby that I could barely say a word. What kind of birth or plan I had no longer mattered. Whether my son would survive was the only thing I could think about.

Usually, when you hear someone's birth story, there is a lot of chaos followed by an overwhelming feeling of joy. "When they put my baby on my chest, it was all worth it!" or "When she finally arrived, I was overflowing with love!" As a preemie mom, those are feelings and experiences that I never got to have, and it's hard not to feel robbed or jealous of that. I didn't get to hold my baby on my chest because he was whisked away to the NICU before I could even see him. I didn't feel a sense of relief after he was born because I had to spend an hour in the recovery area without my husband (he followed our son to the NICU) consumed with worry about the baby I still had yet to meet. We didn't get to have a birth announcement that said "mom and baby are doing great!", because the reality was that we were a long way from that.

Because of the dramatic differences between a term and preemie birth, the NICU can be a very isolating experience. While most new moms tell the woes of cluster feeding, NICU moms pray for their baby to develop the ability to eat. As other new moms might worry that their baby is making a weird sound or stops breathing in the middle of the night, NICU moms pray for their babies to be able to breathe without extra oxygen or machines. Not that these "normal" new mom worries are any less valid or real. They are just as hard and just as meaningful. But, they are some of the very first ways as a preemie parent, you come to realize that your experience is very different from that of other parents.

At times, I found it difficult to navigate this space of having a similar, yet drastically different experience. My "mom group" is made up of perhaps the most inspiring and supportive group of women, and I relied on their humor, support, and encouragement tremendously. However, there were times where I still found it hard to connect. Sometimes it was something silly. Like when a number of them started pumping for the first time in preparation for their return to work and were surprised at the inconvenience and the amount of effort that the whole process took. I had exclusively pumped for over a month while my son was in the NICU and felt like a true expert by the time all those questions came up. Other times it was much harder, as I watched their babies met milestones without issues, or the fact that their doctor appointments were just another check on the list, rather than a constant source of anxiety.

At 20 months, I wish I could say that we are past all that now, but there are aspects that still linger. Our son's gross motor skills are still a bit delayed. His preemie lungs make him much more susceptible to things like brochiolitis (4 or 5 times at this point... ugh). And I'm pretty sure his weight will be an issue until we send him to college. 

That said, after quite some time, soul searching, and a little therapy too, I've come to accept that although being a preemie will always be part of our son's birth story, it isn't going to be his whole story. I've stopped qualifying his age when people ask, and I don't feel my heart race when people tell me he is small for his age. I often say that while I would never wish the NICU/preemie experience on my worst enemy, it has given me a perspective that I will always appreciate as a new mom. The developmental milestones are that much more meaningful and the snuggles are even more special. I can only hope that there is another preemie mom out there reading this who can start to feel a little less isolated. Though your experience and concept of normal may be wildly different, you are not alone.