“I don’t think I’ll ever identify as a preemie parent.”
I remember saying those words to my best friend upon the early arrival of my son. It was not a label I felt entitled to wear, or a phrase I thought I would ever use to describe myself. If you’re thinking it was because I had a late-term preemie who only barely qualified as “early” you’d be wrong — my son was born at 31 weeks, weighing 3 pounds 3 ounces. Very premature by any standards, and yet I felt as though I didn’t belong in the world of of isolettes and measurements in grams rather than ounces.
I’ve had a devastating number of friends give birth to babies on the edge of viability. Babies whose survival was never a given. Babies whose NICU stays were measured in months instead of days. Babies who didn’t come home. Moms who didn’t come home. By comparison my son defied anyone who would call him a wimpy white boy, breathing on his own from the start and with only minimal setbacks during his six-week NICU stay.
I hope it is obvious that I didn’t wish for worse — did not want to see my son struggle more than he did. I wanted to distance myself from the worse-case scenarios as self protection. If I refused to join this club I hoped I could change the circumstances, to make it mean it wasn’t a big deal. He was never in any real danger, right?
It isn’t until I share Rowan’s story with others and take the time to look at their expressions that I see the truth. There is a lot of room between catastrophic scenarios and healthy full-term baby, and plenty of space for grieving what loss there is. I was only hurting myself by not leaving room to ache for all that we missed out on in those last nine weeks. I was only postponing my sadness and fear. I felt the universe demanded gratefulness for all that we had, and failed to let myself feel all the complicated feelings of those long NICU days.
This is not a club anybody wants to join. We don’t send in registration forms and admission essays hoping to gain admittance to this elite institution. This a group we are thrown into blindfolded and without any road map, because each family’s journey is different. We don’t get to chose if we belong — we just do.
So if you are starting this odyssey and are reluctant to participate, know that you’re not alone. It is not a contest in either direction and it’s okay to feel simultaneously angry because babies are going home ahead of yours, and acutely sad for the ones left behind. You are a preemie mom. You’re paving the way for those who follow, whether you want to or not. Your struggle is real and it is painful and scary and overwhelming, and you have a right to be terrified. You have every reason to mourn the end of your pregnancy, the birth, and the newborn stage you had been promised.
It’s okay to belong.
Love,
A Preemie Mom
This was so special to read, and especially the last paragraph is so important to remember. When our twin 26 week preemies were immediately admitted to the NICU, I remember not even wanting to look at the Neonatal Intensive Care Unit over the doors to enter. Maybe, if I did not look and read the words, the babies were not really so fragile. Then, as each day went by, I stoically scrubbed in to race to their private room – definitely did not want to accidentally encounter a nurse walking the halls with a baby much bigger and able to be out of an incubator – those encounters always set me back. Then, it dawned on me. Those larger babies being walked by nurses were in the NICU also and required the same level of care as our babies. You are only in the NICU for one reason and that was our common bond. I started on my acceptance of being part of the preemie experience that day. Today, we have two perfect and healthy 29 month old miracles.
Rhiannon you are the best blog writer I’ve come across re covering having a risky situation and preemie plus later stages, You very sicinctintly,realisticaly, compassionately as well as humerously cover everything that ought to be. That’s both correct information and experientaly. Your so humananly relatable and have such a balanced perspective. You ought to be at the top of the list for any site to read you first. I’m a former social worker who had a placenta praevia bit prem child, grandmother of a 29 weeker preemie(now 5yo). Keep sharing and thanks.
Susan that was well worth relaying the stage when you hadn’t yet arrived at coping with potentialy more well babies still worryingly with risks.
My son had taken in how much harder it could be for parents in riskier smaller baby scenes despite his own fears for his 29 weeker.He actually asked me to be quieter when in my excirement about being told of progress our baby had made in repeating the points excitedly and voluably. He explained that there can be parents in there who’s babies were at stage struggling seriously and more uncertain prognosis, hence obviously the current contrast may realy magnify their hurt at this point. That did end my initial oblivious behaviour.My sons ingoing presence in the NICU had made him aware by overhearing medical staff what other babies situations were like at the time and how it seemed to affect their parents then.
It’s something people ought to be aware of and mindful in their NICU presence.
Very poignant blog. I often feel this way, having been on the side of both. We lost our first daughter shortly after birth as the medical staff would not take her to NICU. She was too small and too early. Our second baby girl, with diligent hard work of a team of MFM doctors made it to 30 weeks before she was born. She came out breathing and crying. She was on only slight oxygen assistance for 3 days and then breathing on her own. She was in NICU 46 days, but released almost a month before her due date. Once she started gaining weight she put it on like a champ and was quickly in the 75th percentile for her actual age… something I have never experienced with my full term son who was in the 10th percentile until he turn 3. At 12 months now, she is wearing 18-24 month clothing and is in the middle of her ages for development of gross motor skills (walking etc)… I blame it on her size.
So I never felt that I “fit in” to the preemie mom club. I feel like I “had it easy”, especially knowing what I do about preemies and micro-preemies (I did my homework when we were just trying to make it to 22/23/24 weeks). I saw the parents of others in our shared NICU room grieve as their babies did not thrive or survive or went thru multitudes of medical procedures.
I grieve many of the missed experiences, like a baby shower or maternity clothes (I was on bedrest starting at 18 weeks, and hospitalized at 23 weeks). Having a hospital tour and a birthing suite to bond with my baby. I missed the initial bonding while snugging and feeding your newborn as she spent a month and a half in NICU and after coming home had to be fed in a way that she wasn’t distracted (holding her away from you and so she couldn’t see faces) and could concentrate on swallowing AND taking breaths. BUT even though I lost that “normalcy”, I was so thankful for her based on my previous loss that I often felt guilty about wanting more.
I know that a few decades ago my daughter would be considered a miracle preemie. 28 weeks was the old threshold of viability and she was just past that. But now we are saving babies as early as 22 weeks. But we are all in this club, with shared experiences. We all have a right and should take time to grieve the things we missed about a “normal” pregnancy and birth.