Preemie Parent Remembrances

I know. I know. My commitment to blogging lately has been stellar…

During a debacle yesterday concerning our brick, I noted that it’s a good thing we experienced the stress of the NICU before we took on house-building, just to keep things in perspective. I was joking, but not really.

I recently received an email from another preemie mama who requested I share a link to her blog post, which is about the remembrances of preemie parents in honor of World Prematurity Day. I always enjoy the shared experiences that families with preemies have. Those first years of Preemiehood certainly bind us together.

So, if you’re interested, here’s the link.

All Preemies Aren’t Created Equally

M, a few days old

In the NICU, everything is relative.

The term preemie can mean a multitude of things: everything from a baby born at 36 weeks and 6 days gestation who weighs 7 lbs and never spends a night in the NICU to a baby born at 22 weeks who weighs 14 oz and spends 200 days in the hospital.

Sometimes, strangers tell me they know a preemie who was the tiniest baby they’ve ever seen–their “tiniest” baby was my two-month-old. M weighed exactly 5 lbs when she left the hospital at 60 days old. At her smallest, she weighed 1 lb. 15 oz.

In fact, I was our family’s preemie until my kids showed up. I weighed 5 lbs 6 oz at birth and was born 4 weeks early. Everyone talked about how tiny I was, how my head fit in the palm of my dad’s hand. Little did we all know that a whole baby can fit in the palm of a hand!

I remember when J was first born, I wanted desperately to know what his survival odds were, but I was too terrified to ask anyone. The doctors and nurses didn’t like discussing a baby’s prognosis because no one really knows. A 23-weeker can surprise you by coming home with no oxygen six weeks before her due date, and a 32-weeker can linger long after everyone thought she would go home. I knew a baby with a brain bleed whose doctor told his mother, as a way of explaining his brain damage, that he would play on the football team but he would not be the captain. Now, at 4-years-old he’s Leader of the Pack, well above his developmental goals and smart as a whip.

Taking J’s temperature when he was about a week old.

While J’s odds of survival were around 80%, he had a 66% chance of having a disability at age 3; he has no disability. He was born too fast for steroid shots to develop his lungs; yet, he was only on the ventilator for a few days. He didn’t catch his first cold until he was 17 months old, and his first serious illness was this spring as a 3.5-year-old.

How he did this well remains mostly a mystery to me. He was healthy in the womb, he was in the 70th percentile when he was born, and my obgyn was so proud of the fact that he was intubated immediately after birth so that he never went without oxygen. He responded well to the surfactant given to him after birth that helped his lungs inflate properly, which meant less time on the ventilator. Less time on the ventilator reduced the scarring in his lungs, which impacts lifelong respiratory health. One bit of good fortune translated into more good fortune, but that addition doesn’t always work. Sometimes, it just seems that there’s no rhyme or reason to the outcomes.

J is not the norm for a 26-weeker. In fact, our pediatrician loves to show him off to visitors in her office, always asking my permission to share his story. J shows us what is possible with preemies. A few times this year, I’ve seen the cost of saving preemies thrown around with so little consideration for what those numbers mean. Sure my children together racked up over $1 million in hospital care, but their excellent care at birth has hopefully paved the way for decades of healthy living in which they will need little healthcare. So what if it is expensive to save babies? I hate to see our priorities when we as a society say we are unable or unwilling to give babies a chance at life.

Much has changed in NICUs in the last 30 years that has expanded the possibilities for preemies. More and more kids like J go on to live relatively normal lives thanks to all the advances. But, what is surprising is that there is still so much disparity from one hospital to the next. Within my own town, two hospitals will attempt to resuscitate 22-weekers, while another one won’t intervene until the baby is at least 24 weeks gestation. Sometimes, a baby’s chances depend on the medical care available in those first critical minutes. And the disparity doesn’t stop there. The quality of the doctors, nurses, specialists, and therapists can vary widely. Techniques common in one hospital are rare in another one, and conveniences such as bedside breast pumps might seem like perks when really they can alter the health of a baby at a time in their lives when breast milk is medicine.

So, my 26-weeker isn’t someone else’s 26-weeker. One preemie’s path in no way defines the journey for other babies.

I’ll admit that I am a preemie snob. Please forgive me. It’s not just my own children but all the other babies I’ve met along the way who give me pause when a grandmother brags about her miracle born five weeks early. I don’t doubt that baby is a miracle–all babies are treasures of good fortune–and I don’t doubt that any hour with a baby in the NICU is a miserable one. It’s just that it’s challenging for All the Preemie Mamas to keep our mouths shut. We want to brag about the miracles we’ve seen, the things that shouldn’t have happened, all the dozens and dozens of babies we watched work their way through the NICU who wouldn’t have lived more than a few hours or days just three decades ago. Their accomplishments shouldn’t be diminished by the preemie down the street who weighed 4.5 lbs at birth, was breathing on his own at 33 weeks, and spent only two weeks in the hospital. That story is amazing, but goodness could I tell you some humdingers.

Like the barely 24-week twins whose mother was prepared to lie about their gestation to make sure they were resuscitated at birth. Or the 26-weeker who came off oxygen at age 10. Or the set of quads whose mother was encouraged to abort two of them to increase their survival odds. The stories go on and on and on.

Preemie stories are just as unique as the babies who inhabit them, each one of them different and special.

Seriously, I should write a book…

A Window Into A Preemie’s First Year

A few weeks ago, several friends on Facebook alerted me to a video that was circulating the Internet. It’s a video montage of a preemie’s first year of life. Of all of the NICU photos and videos I’ve ever seen, this one comes the closest to really depicting our journey. As M nears her first birthday, it resonates even more.

The video is lovely, uplifting, and tragic all at the same time, just like the NICU journey. Here’s the original link, if you’re interested.

Wishing I Could Do More

As I’ve had to do so much this year, I had to step away from the blog–from all creative activities actually–because the kids were sick. We traveled the weekend before Thanksgiving, and both kids came home with colds. I try to temper my frustration with having sick kids so often this fall with gratefulness that the kids are strong enough to handle most common illnesses now. And relief that at least M has had a Synagis shot this month!

I’ve been moved lately by the preemie stories that have come my way. Since I’m usually the only Preemie Mama people know, they pass along all sorts of photos, videos, and stories my way, which I love! I’m already inundated with preemie stats and concerns, so learning more about this community is rewarding for me. Some of the stories mirror my own just enough to feel familiar but they are tragic enough that they disturb me. They remind me that someone always does have it worse and that even during our darkest days, we were always blessed with healthy kids.

Lately two stories stand out. The first is of a friend of a friend who lost her husband in a car accident a few months ago. Then, she was hospitalized for bleeding complications due to placenta previa. She had her baby girl at about the same point I had M. She also has a son at home, a son she cannot care for while she’s tending to her baby in the hospital. I find myself thinking of her a good bit. I do not know her name. She does not know me. But, I know just enough of her journey to hurt for her. I cannot imagine going through the NICU without your spouse, because my husband was the only other person who was in the dark place with me. We always had each other, and I think how unfair it is that someone should be stripped of her partner just before such a traumatic time in her life. I called my mom after I heard the story, and I asked her why some people get too much grief at one time. I know some of us have more faith than others. They would say I just don’t know the big picture, and maybe they’re right. But, I can’t help but have a gut reaction, frustration that one woman should be given such a load at one time.

The other story that has been on my mind is of a woman who just had a baby abroad. Her husband is in the military, and they’re stationed in South Korea. She had her baby at 31 weeks; she almost made it to the 32-week threshold that separates long NICU journeys from short ones. And yet her baby is struggling. He is having a difficult time breathing and eating, and I can’t help but be haunted by a critical factor: it is not customary for parents to hold preemies in Korean hospitals. The mother has been told she may not hold her baby for months, even though he’s already three weeks old. Her milk production is faltering, and, in my opinion, her son would be happier and healthier if he had a little contact with his mother. Human babies, no matter how early, need physical contact, which is why kangaroo care is essential. Of course, a 2-pound baby can’t handle all the stimulation of a newborn baby, but he needs his mother’s warm body, heartbeat, and steady breathing to help his own body remember all the jobs it must now do that it is no longer in the womb. Kangaroo care allows the baby to relax, to be soothed, to have some solace and comfort during a stressful time. So many studies across the world support the science of it. And it’s just common sense. No one soothes us the way our loved ones do! So, the idea of that poor baby being separated from his poor mama just haunts me. I also wonder about preemies around the world and how just a few alterations in care could dramatically change the outcome of so many little lives.

I only wish I could do more.

The preemie stories keep coming, and I keep filing them away, hoping that one day the full scope of what the heck I’m supposed to do with all this knowledge and this newfound passion will present itself.