I belong to a Facebook group for parents of preemies. A premature baby is one born prior to 37 weeks gestation. There is a supposed/perceived ongoing battle between the mothers of micro-preemies and those babies born at a later gestation. Micro-preemie is a term typically used to describe those infants born earlier than 28 weeks gestation. Per the rights of the administrators of the group, posts that seem to “fan the flames” are being removed. It seems that many of the mothers feel that they are not treated like “preemie moms” because they have children born later – 33-36 weeks or so. I do not feel that they are any less a preemie mom, but I do feel there are some vast difference between those moms and the mothers of micro-preemies. Since I cannot explain my feelings on the board without bothering some overly sensitive mothers, I will do so here.
I gave birth to Andrew at 24 weeks and 5 days. You may smirk, but those 5 days are important. When Andrew was born in 1998, a 24 week baby had less than 10% chance of survival. Every day past 23 weeks was a smidgeon of a percentage point. In fact, when I went into the hospital at the end of week 22, I was told to prepare for a dead baby. Harsh, right? Fast forward 10 whole days of strict bedrest (as in not even able to sit up). May 1st. 24 weeks + 5 days. He was 1 pound and 11 ounces. My only view of him was the rush of an incubator past the foot of my bed on the way out the door. I knew he was a boy and told the nurses his name was Andrew.
It felt like days before I was able to see him. In reality it was a couple of hours. My husband had been able to see him briefly through a window. I had a Polaroid picture of him. Just in case. Just in case he died before I got upstairs to the nursery. Since I’d been on bedrest for so long, I had to be wheeled up to the nursery on a gurney, and that only because I threatened the staff. No one wanted to be the one blamed if I never got to see my baby alive. Odd the threats you resort to when under duress. So, off I wheeled, lying on the gurney. It was shocking to see a baby so small. I had never seen anything like him and neither had most of the nurses. He was the youngest baby born at the hospital…ever. He was hooked up to tubes and monitors under insanely bright warming lights. Machines breathing for him, checking his heart rate, monitoring his oxygen levels, IVs for fluid and medicine. His first nurses were Mickey and Laura. Talk about drawing the short straw. I remember little else from our first meeting, Andrew and I. But he wasn’t dead.
I went home three days later without my baby. But my mantra was “He’s not dead.” I was holding onto the fact that he’d made it through the first 48 hours so would probably make it through the week. I wasn’t looking beyond that. I had elected to keep in that hospital instead of transferring him. The hospital had the facilities and the doctors, if not the paperwork, yet. The primary doctor had worked on the team responsible for the then world record smallest baby – 9 ounces. And yes, I confirmed his story. Besides, Andrew probably wouldn’t have survived the transfer because it would have been within the first two days.
Andrew came home 108 days later on August 16th. One day before his actual due date. I had to swear that I felt confident about taking care of him at home with no monitors.
So, back to the beginning of this story. The battle of the preemie moms. There are some things the mother of a gestationally advanced preemie will never fully understand. Please keep in mind that, while this is not true in all cases, it is true in most.
She will not have to make the decision to resuscitate or not. Answering the question, “If your baby stops breathing, do you want us to use extraordinary measures?”” If your baby’s heart stops, do you want us to use extraordinary measures?” We said yes to both.
She will never realize the stark reality of her baby born with heart beat but not breathing.
She will not realize the horror of having no idea what he baby looks like for hours after the birth, and after that, only with tubes and tape covering her baby’s face. Andrew was about two months old before I ever saw his face, and then only for a few precious seconds.
She will never wonder what her baby’s eyes look like because, like a new kitten, his eyes aren’t yet open.
She will not wait 10 days to feel the weight of her baby. I don’t mean hold. I mean place her hands under her baby to feel what 1.5 lbs feels like (he’d lost weight down to 1lb 3oz that first week).
She will not wait 17 days to hold her baby for the first time. I left my cousin’s wedding reception early so I could be at the hospital at 10pm because the nurse called to tell me I could hold him. I’d been waiting for a good day. I held him for less than hour. I didn’t get to hold him again for several days.
She will not watch a machine breathe for her baby, day in and day out for a month. Then watch a machine help him breathe for the next two months.
She will not wait a full month before ever hearing her baby cry.
She probably won’t wait 108 days before bringing her baby home.
And she probably won’t think she hit the pregnancy jackpot when she hits the 28 week mark with her next baby. (I really hit the jackpot with 37 weeks.)
Most of these circumstances are common place for the mothers of micro-preemies – 6% of premature births. While most preemies are born with some concerns – low birth weight, breathing issues, vision problems, inability to regulate body temperature, even brain bleeds – micro-preemies typically have their own set of problems. Every mother of a premature baby worries, cries, second-guesses, prays, curses, promises. These things don’t change. She needs support and love and extra care and attention. But the differences in situations based on gestational age are often vast. While I am not looking to diminish anyone’s journey, I do want everyone to realize that all premature births are not the same.
That being said, Andrew is now 13. He’s asked to wear a tie for his 8th grade graduation pictures tomorrow. I hope he remembers to brush his hair.
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