This Too Shall Pass
Today, Isaac and Molly turn 32. That’s a year older than I was when they were born (don’t do the math, it’s not pretty). Happy birthday to you both, you amazing humans!
I have two friends who are early in their parenthood journey. One just had a preemie, after two full-term healthy births. The other is due in January, doing well after an earlier pregnancy loss. My heart both sings and bleeds for them.
This parenting thing is not for the faint of heart. There are so many things that can go wrong. So. Many. Things. Prematurity and pregnancy loss are among them, and they are hard, but there is so much more. We won’t go down the rabbit hole of potential problems — health (both physical and mental) of the mother and baby (both before and after birth); learning difficulties; behavioral issues; food allergies; sleep problems; thumb sucking; toilet training … and that doesn’t even include the ones I didn’t have to think about in 1991 (cell phones, social media, cyberbullying).
It’s useless to try to catalog the things that can go wrong, because there’s always something. As my own mom often said: if it’s not one thing, it’s your mother.
As I watch my friends navigate these early years, I am equally envious of them and grateful it’s not me.
I’m envious because little kids are a blast. Each day is a fresh start and a new adventure. They hold no grudges. You get to see the world through fresh eyes—eyes full of wonder. The intimacy of a young family provides unparalleled closeness and a mutual, unconditional love that stretches the boundaries of your heart and proves that its capacity is limitless.
The reason I’m grateful that it’s not me has to do with the current state of the world.
I have to remind myself that things aren’t worse than they were when Isaac and Molly were born. Of course they aren’t. There was war (Persian Gulf and Balkan); Anita Hill was raked over the coals for sexual harassment testimony against then-Supreme Court nominee Clarence Thomas; Rodney King was beaten by police; Jeffrey Dahmer’s atrocities were discovered; a cyclone in Bangladesh killed 200,000 people; U.S. postal worker Joseph Harris killed his ex and two co-workers and gave us the idiom “going postal.” There were wildfires and killing tornadoes and a mass shooting at the University of Iowa.
It’s not worse or harder now than it was then. The truth is, I was just younger, not quite so jaded (or tired). And so full of hope for them. Even in the darkest moments, when every breath was a Herculean struggle, I hoped for them harder than I had ever hoped for myself. As I watched those tiny, helpless humans figure out how to live in the flawed world into which they were born, everything seemed possible. That’s the gift of new life.
For an upcoming baby shower, I was asked to create something to share with the expectant parents. Advice, I guess, but you can’t give parents-to-be advice. Because every parent is different. And every pregnancy is different. And every child is different.
But I can tell them what Isaac and Molly taught me. While we were in the hospital and terrified about what would come next, I learned to slow down, to be in the moment, because I had no idea what the next moment would bring. Most of the time, it didn’t look promising. I learned to hang out with them in this moment. By doing that, I discovered that we could face each new crisis as it arose without becoming totally overwhelmed.
It’s so easy in the warped immediacy of parenting, during those interminably long days and disconcertingly short years, to get bogged down in the daily drama. The colicky baby who won’t sleep; the finicky eater who won’t eat; the sibling rivalry that won’t end.
This too shall pass.
What you don’t realize is that the good stuff passes, too. The infant who grabs your finger and smiles at you gassily; the toddler who wants to spend every minute with you and asks for more bedtime stories; the second grader who thinks you’re brilliant because you know the multiplication tables by heart and get most of the questions right on Wait, Wait, Don’t Tell Me!
This too shall pass. The good and the bad, the happy and the sad.
That is my advice to my young friends, and everyone else for that matter. Not that anyone is listening. Pay attention to the good moments. Stockpile them. Give them more weight. Because they too shall pass.
And then they are 32. A year older than you were when they were born.
As for the preemies in question, they’re doing pretty great. Molly started a new job yesterday. Isaac continues to make everyone’s day at his job. They both have faced challenges this past year and conquered (or at least handled) them with grace and maturity. On their own with actual adulting. And my friend’s new preemie is home from his NICU stay, doing well on his own journey to post-preemie life.
Happy World Prematurity Day to them and to all preemies and parents of preemies. Our shared experiences make my heart both sing and bleed for you.
When is a Preemie No Longer a Preemie
We had our family birthday celebration for Isaac and Molly last night — birthday eve, I suppose you might call it. We didn’t do any celebrating on their actual birth day — in fact I didn’t even meet Molly until the day after she was born — so nudging our celebration in either direction feels reasonable. As always, this time of year brings the memories of that stressful, miraculous first year flooding back. It’s been such a gift to have all four kids in the Chicago area for the last couple of years — to watch them becoming adults and forming adult sibling relationships.
Isaac and Molly are both doing great. They are amazing humans who are finding their footing in this volatile, changing world. They’re both doing well in their jobs, appreciated for the work they do. They both got raises this year (hooray!). I sat looking at them last night, in the light of the candles from the table and the cake (cheesecake with cookie crust and chocolate ganache) and wondered if these two adults — healthy, employed, contributing adults — can or should still be thought of as preemies.
Yes. At least to me, and here’s why.
There are few things in life that make us take stock and appreciate what we have. Isaac and Molly’s birthday does that for me. Remembering their rough start, how they fought to be here, how we worked to “catch them up” and help them lead full lives, makes me grateful and hopeful and otherwise full like nothing else. The intensity of that year is etched on every cell of my body. It’s seared into my muscle and emotional memory.
As we celebrate, I’m always reminded that other preemie families have different experiences — harder, even tragic — and I mourn for them.
I like to take this time to remind us all that November 17 is also World Prematurity Day — a day to raise awareness of the challenges and burden of preterm birth globally. Isaac and Molly were born at 24 and 3/7 weeks gestation. In 1991 when they were born, they were among the earliest surviving preemies. At less than 26 weeks gestation, they would still be considered micropreemies.
Last year, I wrote about how the COVID pandemic brought me right back to the most stressful days on the NICU. This year, it’s the massive outbreak of Respiratory Syncytial Virus Infection (RSV). The first time I ever heard of RSV was on the NICU, while learning to scrub up like surgeons just to visit with my babies. Almost everyone gets RSV by age two, and for most people, it presents with cold-like symptoms. That’s why I’d never heard of if, because unless it progresses to respiratory distress, it’s “just a cold.” We were warned to stay away from the NICU if we had any cold symptoms. After Isaac and Molly came home, our team told us that RSV was probably the biggest danger they would face. We were vigilant (read obsessive) about keeping them away from cold symptoms and germs. Lots of hand washing. Interrogating potential visitors about any coughing or sniffles they had experienced in the last 10 days, and asking them to reschedule their visit if they had even so much as sneezed. And we kept them away from other young children entirely. These precautions helped keep our preemies healthy as their very immature immune systems developed.
At around age two, our amazing pediatrician Dr. Daniel Lum, told us that they were doing great and it was time to start letting them socialize with other children. We were terrified. How could we expose them to the human germ factories that most people call toddlers? We learned that a healthy immune system needed to be encouraged to learn how to fight. In other words, keeping Isaac and Molly in a bubble could actually make them more vulnerable.
I’m not a doctor, but much of what I’ve read about the 2022 outbreak of RSV is the result of a similar bubble. As a society, we protected ourselves and our children from COVID with periods of isolation, masking and (I hope) vaccinations. Young children were the last to have access to vaccinations and many families with babies, toddlers, and preschoolers maintained their social pods to continue to protect their children. While we observed COVID precautions in 2020-2021, RSV virtually disappeared, but experts speculated that this winter would see a huge surge in RSV cases as we’ve moved away from these mitigating protocols. Yesterday, my brother mentioned that a friend’s young twins were hospitalized with RSV and I was right back in 1992, anxious and worried for my preemies (they’re fine), my brother’s friends’ twins (they’re healing well), and all young children. There is no more helpless feeling for a parent than having a hospitalized child.
The good news is that while RSV can be acute, hospitalized patients usually recover with oxygen and hydration therapies. The better news is that RSV vaccines are in the works.
This is another reason why I will always think of Isaac and Molly as preemies: science. Science is why they are here. They were lucky enough to be born shortly after some huge advances in the science of neonatology. Science continues to explore the underlying causes of and solutions for premature birth. Science gave us COVID vaccines that helped my preemies (who have lung damage from extended stints on ventilators) from contracting a disease that could have devastated them again. Every decision made to get them through their prematurity to their happy, healthy, current lives is thanks to science.
Two of our kids brought along their significant others to our celebration last night, so we got to pull out the commercial Molly and Isaac made for Evanston Hospital when they were five. It’s been a while since we’ve had a good excuse to watch it again (not that we’ve ever really needed an excuse). I dare you to watch it and not kvell.
So happy thirty-first birthday (yikes!), Isaac and Molly. You’ll always be my preemies. And that’s a good thing. If you care to celebrate with us, consider making a donation in their honor for Prematurity Awareness Month. Or just think of them and send your good wishes into the universe.
A Birthday Wish
Thirty. 3-0. I do not want to think about this, let alone talk about it. So I’ll digress with a true story.
ARDS
Two and a half years before Isaac and Molly were born, on May 7, our wedding day, my mother became gravely ill and ended up in intensive care with something identified only as ARDS (acute respiratory distress syndrome). She had been perfectly healthy the night before, woke in the morning with an excruciating headache, somehow made it through the ceremony, and was in the emergency room an hour later. Her lungs became filled with fluid and she was put on a ventilator. She almost died — several times. She spent six weeks in intensive care and her full recovery took more than a year. All the specialists who treated her never were able to figure out what happened. She lived a full and active life for 28 more years, but we had to be careful. She was at huge risk of pneumonia and her lung x-rays looked as if she had active Tuberculosis. In other words, they were a mess.
RDS
When our preemies arrived 16 weeks early, I was so conversant in the language of ventilator care, pressure settings, and oxygen levels that several of our caregivers asked if I had been to med school. I have not. All the medical jargon had been imprinted on my brain during my mom’s acute illness. Similar to mom’s ARDS, both Isaac and Molly suffered from Respiratory Distress Syndrome (RDS) — a breathing disorder common in preemies due to the toll that having to breathe puts on immature lungs. Preemies often need medical intervention to help them breathe, which can cause additional lung damage, requiring more artificial assistance, sometimes spiraling into a vicious, intractable cycle. Though they came through their extreme prematurity astoundingly well, they carried the scars of lung damage and the associated risks for years.
COVID-19
If all this sounds disturbingly familiar (even if you don’t have a mom who tried to die at your wedding or preemie twins who spent five months in the hospital and a year on oxygen), that’s because ARDS is one of the lung complications that accompanies severe cases of our current health crisis — COVID-19. Since the beginning of the Pandemic, I (like everyone) have been dealing with anxiety that swings from vague unease to itchy discomfort to full-blown PTSD.
The stress of this ongoing battle with COVID takes me right back to the hospital — both of them: the University of Michigan hospital, where I got a standing ovation in the ER for my wedding dress and well-meaning staff tried to convince me that it was somehow okay that my mother had turned an unnatural shade of blue and couldn’t breathe; and Evanston Hospital, where well-meaning staff comforted me through five months of health crises in two babies, including them turning colors that people should not be — navy blue and purple bruises from being banged up during traumatic births and all the invasive procedures; yellow from severe jaundice; and that frightening, now-familiar dusky blue from poor oxygenation.
I can’t sleep at night thinking of those fighting severe COVID, dealing with the acute and lingering effects of ARDS. I ache for those we have lost. I remember the strain and exhaustion on our caretakers’ faces as they fought to save my mother and our babies, and can’t imagine the toll COVID is taking on healthcare workers today.
My brother and I have spoken about how incredibly similar my mother’s illness was to severe COVID, right down to her loss of taste and smell. Her illness came on suddenly, as COVID symptoms can. One minute she was fine, the next minute, near death. The twin’s RDS evolved more slowly, as the machines that were keeping them alive were also destroying their immature, developing lung tissues. All three suffered lingering consequences of their A/RDS. We are still grateful for the annual flu shots that help us protect their vulnerable lungs.
Hope
My mom had no way to protect herself from the unknown, still unidentified disease that overwhelmed her body in a matter of hours. There is no vaccine for prematurity. We were as helpless in the face of these onslaughts as the world was at the beginning of the this pandemic.
But here’s the thing. We’re not helpless now. We have proven, safe vaccines against COVID-19 — vaccines that will protect each of us personally and, at least as important, protect those at higher risk. This is both a gift and a responsibility. It has been helpful to me during the dark months of COVID to remember that miracles are possible — Isaac and Molly are proof. But the miracle of their survival was only possible thanks to science — the decades of research and neonatal care advancements that allowed them to be two of the earliest surviving 24-week preemies. We owe their lives to science.
I had great sympathy for those who were wary of the vaccine in the beginning. When the twins were ready to come home from the hospital, they received several vaccinations. The chicken pox vaccine was pretty new and somewhat controversial at that time. I had some concerns, which I discussed with our fantastic pediatrician, Dr. Lum. He patiently reviewed the data with me, addressing my concerns. He then explained that while most children come through chicken pox just fine, it’s more than just some itching and discomfort. Chicken pox is a respiratory illness, and for people with vulnerable lungs, like my preemies, it can quickly become acute. He recommended the vaccine and we accepted his recommendation.
A Profound and Simple Wish
As of this date, 7.56 million doses of COVID-19 vaccines have been administered worldwide. Only 41.5% of the world’s population is fully vaccinated. As of nine hours ago, 5.1 million people have died from COVID-19. More than five million people. I am out of sympathy and out of patience.
Viruses are smart. Their one job is to survive long enough to find a new host. If not eradicated through vaccination, they will continue to mutate and spread. Don’t let this virus outsmart you or those you love.
Individuals who contract COVID-19 while pregnant face a higher risk of having a very preterm birth, as well as any preterm birth, according to a large study led by researchers at UC San Francisco.
University of California San Francisco
My birthday wish for Isaac and Molly is COVID vaccination for all who are eligible. They fought so long and so hard to be here. They have been vaccinated to protect themselves and to help protect you. If you read this, please help us celebrate these two miracles by getting vaccinated — to help protect our most vulnerable. If you already are vaccinated, thank you. If you know someone who might need a little convincing and think this story could help, please share it.
For the record, Isaac and Molly are both thriving, with new jobs this past year. They continue to love and embrace the life they fought to have. I continue to be eternally grateful that they have graced mine. Happy (30th *gulp*) birthday Isaac and Molly. And happy World Prematurity Day to everyone.
Obsessions
I’ve been thinking about my preemies a lot this year—the year of the Corona Virus Pandemic. A year of obsessing, of worry, of feeling helpless—like the months before and after Isaac and Molly’s remarkable and traumatic entry into this world.
Meantime, consider this a gentle reminder to protect our most vulnerable (preemies, elderly, immuno-compromised) by wearing a mask. Thank you.
Unlike 2020, which has mostly been a blur of anxiety, 1991-92 exists in acute detail in my memory. Back then, we learned first hand that nurses were heroes. Like the nurses of the pandemic, they took care of our family when we could not.
People often ask how we did it. How did we survive? It’s a moot question, of course. One doesn’t have a choice about (most) health crises. We were so lucky. We had friends and family and excellent health insurance and compassionate, skilled caretakers.
It’s not surprising that this pandemic takes me right back to the NICU. The experience of severe COVID is frighteningly similar to that of our prematurity journey: trouble breathing, long-term hospitalization, intubation, ventilators, oxygen saturation, lung damage, unpredictability, organ shutdown, experimental treatments, corticosteroids. long-term consequences for survivors. Fear. I worry that my preemies are potentially more vulnerable if they were to contract COVID.
Back then, we lived just over a mile from the hospital where our sick babies spent nearly six months. The day I was discharged, I went home and showered before returning to my babies in the neonatal intensive care unit (NICU—or ISCU, infant special care unit, as it was called in our hospital). We could—and did—visit any time, day or night.
People hospitalized with COVID don’t have the comfort of family visits. Families don’t have even the tiny feeling of being able to do something by visiting sick relatives. People are dying alone, and families are being robbed of the opportunity to say goodbye. My heart aches for them.
I think about the families who aren’t as lucky as we are. Families that can’t afford healthcare. I obsess over whether we are about to lose the protections of the Affordable Care Act, which allowed us to keep Isaac on our insurance until he was 26 years old. It also protects Molly’s right to health insurance, which had been denied to her because of her early surgery to repair an atrial septal defect (ASD). Though completely healed through that remarkable surgery on her tiny, walnut-sized heart so many years ago, and though her amazing cardiologist (the late, great Dr. Roger Cole) attested that she would never suffer any symptoms related to her ASD, it will dog her as a preexisting condition for the rest of her life.
2020 has brought into focus the deep racial divides in our country, disparities we can no longer afford to ignore or pretend not to see. We have learned that people of color have suffered disproportionately from the ravages of COVID-19. When my twins were in the hospital, I obsessed over everything related to prematurity—reading and studying and asking questions, because I was helpless to do anything else. I learned that black women are at greater risk for delivering prematurely and that racial bias affects the treatment of preemies of color. This was true 29 years ago, and it is still true today.
The through note of all these obsessive thoughts is what it would be like if my babies were on the NICU now. I can’t even imagine. When we visited them, we had to scrub up and don PPE (an initialism that wasn’t even in our vocabulary back then). We felt isolated, spending little time with friends and relatives for fear of catching a cold or the flu or some other bug that we could pass on to our immuno-compromised babies. What must it be like for preemie parents who aren’t permitted to visit their babies for fear of passing on or contracting COVID-19?
This would be the nightmare of nightmares.
Please wear a mask.
It’s hard not to be angry these days. I’m furious at those who refuse to wear a mask, who won’t take even this simple step to protect our most vulnerable. I’m livid when I remember the president mocking a reporter’s disability, a gut-punch to every parent of a child with a disability. It’s a visceral reminder of the pain I felt when my child was teased and mocked and excluded. I despair over the lack of empathy and compassion, the hatred we are spewing at each other, when we should be coming together to overcome the very real challenges this wretched year has thrown at us.
These are the obsessions that have plagued me during 2020, a year when we all have too much time to obsess.
But today is a day of celebration and reflection. Our tiny, vulnerable, incredibly sick little preemies are now 29 years old. They are healthy. They are as happy as any of us can be this year. They are coping with the challenges of the virus, the economy, the lack of equal justice. They are employed. They voted.
Today is also World Prematurity Day. I’m convinced the fact that it falls on my preemies’ birthday is no coincidence. It is a day when I reflect on how lucky we are. A day when I grieve with preemie families who have suffered incredible loss. And a day when I think about the many lessons I have learned from these two remarkable humans.
This year, I am trying to dwell on Isaac’s compassion. I’m in short supply. I think most of us are. Isaac is the kindest person I know. While I marvel at everything Molly accomplishes by doing (an idle Molly is an unhappy Molly), Isaac’s gifts are less visible. His good humor rarely waivers. His patience for us mortals and our foibles is unmatched. He is the personification of compassion. The world sometimes sees Isaac as someone who is different. My wish for the world is that we can learn to see things the way Isaac does. That is to say differently.
In this very different year, so many things are beyond our control. But in this one way, we do have a choice. We can choose compassion. And when they ask how we did it, how we survived 2020, this will be the answer.
XXVIII
Holy shit, 28!
I know. I shouldn’t swear, because I’m a writer and lazy word choice and whatever. And I shouldn’t swear, because maybe the blog police really are a thing. You never know these days. And I shouldn’t swear, because this is about babies, for God’s sake, but frankly, watching my language around my children was a battle I lost, oh, about 28 years ago. And so I say to you now:
Holy shit, 28!
Those who know me probably think my follow-up line will be: how did this happen?
Nope.
I know how it happened. I welcomed it.
Having children is a blatant exercise in masochism. It often happens right when you reach the stage in life when you think you are who you are going to be. You fix a picture of that self in your mind’s eye and that is who you are and who you will always be. And then you invite these beings into your home who both exacerbate and illustrate the aging process. You watch it happen right before your very eyes.
There’s evidence everywhere: outgrown shoes and clothes, developmental milestones, growth charts, graduations. And yet, we lie to ourselves that, yes, they are growing up, be we are somehow not growing old. It takes some nerve that these people get to prove you wrong when you have fed them, clothed them, and loved them. It’s the very definition of chutzpah.
It is human nature to want to cling to that shiny image of ourselves, to be vain, nostalgic, and even a little sad when someone holds up the mirror of truth. But today, and every November 17, I cannot bring myself to lament the passage of time. Today, I celebrate it, because Molly and Isaac are here and still the miracles they were 28 years ago.
According to recent statistics, the current survival rate for 24-week preemies is about 39%. We don’t have many statistics on very premature babies born before 1991, the year Isaac and Molly were born.
We were lucky. The use of surfactant replacement therapy was a game changer for very early preemies, and they were born at time when it had been studied and tested, and could be used. It gave them a fighting chance. It was still new enough that they were part of a study comparing bovine surfactant with synthetic surfactant.
We were lucky. They were born at Evanston Hospital, whose tertiary care ISCU (Infant Special Care Unit) treats more than 500 sick and premature babies every year. I have yet to meet a more talented, skilled, devoted group of professionals anywhere.
Isaac and Molly were generous to us. They grew slowly—didn’t rub our faces in the passage of time the way our other children’s more regular and predictable growth spurts did. We got to delude ourselves a while longer.
For a long time, we looked at every developmental issue, every milestone, every personality trait through the preemie lens. Are they not talking yet because they were preemies? Are Isaac’s short-term memory issues because he was so sick? Will they ever be ‘normal’ (whatever that means)?
I don’t know when it happened. I promise I was paying attention, but somehow I missed that particular miracle. The day when they stopped being preemies and just became who they are. If you’re wondering, they did learn to talk. In fact, Molly talks at double speed and rarely shuts up. Isaac still can’t remember the simplest things. He can talk to you with great depth and insight on a whole host of complicated topics. Just don’t give him two instructions at once and expect him to remember.
These are the things we laugh about, just as we admire Molly’s tenaciousness and Isaac’s kindness. It no longer matters whether it was because they were preemies. Or maybe, being preemies, like these other characteristics, is just part of who they are: bright, interesting, interested, gloriously flawed human beings. In other words, perfectly normal.
We are lucky. On this day, more than any other, I hold that in my heart, along with the pain of those who are not so lucky.
Tomorrow, I’ll go back to studiously avoiding the mirror and pretending that I am closer to their age than my own. But, today, I celebrate the fact that they are — holy shit! — 28 years old. Happy birthday, my babies!
Someday, I will finish writing this memoir, but today I post again because, in addition to being Isaac and Molly’s birthday, November 17 is also World Prematurity Day and November is Prematurity Awareness Month. The March of Dimes does fantastic work on behalf of preemies. If you feel like celebrating, here’s where you can give a gift.
Einstein and Miracles
“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.”
I didn’t believe in miracles until Isaac and Molly. I’m not sure quite when I started to believe. Their conception was a probably a miracle. Their births were miracles, even though it didn’t seem so at the time. Their survival — absolutely miracles. But the true miracles are these two amazing human beings.
Each day, when I look that them, I remember that day—26 years ago today—when they were born. When I have a crap day, when the world around me is falling to pieces, when I lose faith, when the things I know in my heart to be true are being trampled on an hourly basis, when I need a miracle to get through this day, I remember that day. And I believe.
I know how lucky we are. Statistics vary, but even today, the survival rate for babies born at 24 weeks gestation (considered micro preemies) runs between 66% and 80%. Back in 1991, the use of surfactant and steroids for lung development was cutting edge. I consider the science behind those interventions miracles. Don’t misunderstand me. Science saved my babies. The doctors, nurses, respiratory therapists, pharmacists, phlebotomists, researchers—and those who came before them and trained them—saved my babies. Science is miraculous.
We need to support science. It’s under siege…again. Funding for medical research and Medicaid (“which covers 50 percent of all births, including many high-risk pregnancies”) has been threatened repeatedly during the first year of this administration. Pay attention. We’re talking about our future. Good science begets miracles. Remember Einstein.
As always on this day—November 17—we celebrate Isaac and Molly’s birthday along with World Prematurity Day and Prematurity Awareness Month. If you are so moved, donations to these worthy causes are always appreciated. Go purple in support of the cause. Spread the word using the hashtags #worldprematurityday and #givethemtomorrow.
If you want to know how Ike and Molly are doing, the answer is great. They are forging ahead and building their adult lives. After years and years of me having to explain the details of their complicated births and early years, they now get the “pleasure” of having to spell it all out on every job application and health form. As Molly said: “Adulting sucks.” So glad they’ve been given the chance to realize that for themselves.
Miraculous.
Preemie Lessons for Today’s World
Excuse my language, but Holy Crap*, how did this happen?! Twenty five. 25! Twenty-freaking-five!
(Please note that the birthday people in question are both sleeping now because they have jobs—yay!—to go to in the morning, so I will post a birthday pic when they come home for dinner. Edited at 11:09 pm to include picture above.)
Cause for celebration, indeed. Before I start, let me remind you that in one of the world’s greatest examples of serendipity, Isaac and Molly’s birthday happily coincides with World Prematurity Day.
“World Prematurity Day on November 17 raises awareness of this serious health crisis. This is a critical moment in our fight. In 2016, the nation’s preterm birth rate worsened for the first time in eight years.”— March of Dimes
If you’re looking for a good cause to support, you can celebrate our preemies’ birthday by donating to the March of Dimes.
If they’re paying attention, most parents recognize that we learn far more from our kids than they ever learn from us (don’t worry; they’re not reading this). I have learned so much from each of my children, but we’re talking about Isaac and Molly here. They are both shining examples to me in many ways.
From Isaac, I have learned patience, grace, kindness, and purity of spirit.
From Molly, I have learned tenacity, fortitude, passion, and gumption.
I freely admit that I’m not always (read rarely) as good at practicing what they have taught me as I am at recognizing it, so I thank them for their gifts, and apologize for not being better at adopting them.
While not sleeping this week, I have thought a lot about the lessons I’ve learned while raising preemies for 25 years. In particular, I’ve been thinking about privilege—trying to understand it, trying to accept that (through no effort on my part) I and my family have been afforded privileges that we don’t even recognize. It’s hard to understand something, let alone affect change, when you don’t even recognize it. So here’s what raising extremely premature babies has taught me about my privilege:
- Though my husband lost his job two months before Isaac and Molly were born, we had amazing health insurance. We were able to keep it partly because my husband fought for it when he lost his job, and partly because the Employee Retirement Income Security Act of 1974 (ERISA) [a federal law] includes the COBRA amendment, which allows some employees and their families to continue health coverage for a limited time after a job loss (at their own expense). I do not know what we would have done without that excellent insurance coverage, which is no longer even available. It still took us years to pay off our portions of their NICU stay and follow up care. I am grateful today for the Affordable Care Act, which allows my family to have health insurance and has allowed us to keep Isaac insured because his part-time job does not offer that benefit.
- We are privileged to live in a community with one of the premier Neonatal Intensive Care Units in the world, the Infant Special Care Unit at Evanston Hospital. At the time, we lived just a few miles from the hospital and were able to visit any time we wanted, day or night. There were families who lived 25, 50, even 100 miles away, who had other children at home, or who had to overcome other obstacles to visiting their preemies. The more than 120 professionals who cared for Isaac and Molly during their 5-month ISCU stay were literally life savers, but how much harder would it have been if we couldn’t be there for our babies.
- Both Isaac and Molly received myriad therapies between birth and kindergarten. Isaac was a special needs student throughout his school career, and we are privileged to have the Individuals with Disabilities Education Act (IDEA) to support us in our efforts to get and keep the services he needed.
- We are privileged because our children grew from 1.5 pounds each to become healthy children and now young adults. Many, many families with preemies are not as lucky as we have been. My heart is with them.
There are so many people who helped us along the way. I know we are lucky. Everyone we met was willing to fight for Isaac and Molly—to go above and beyond to keep them safe and healthy, no questions asked. Not every family has that privilege. I have tried to give back, and will continue to try in honor of these extraordinary young people, as well as for those who don’t have the resources we have had.
We had occasion to tell Isaac and Molly’s birth story at a party recently, and one of the people listening said: “OMG, that’s just terrible.” I’ve heard that a lot over the years, and it always takes me aback. I honestly don’t remember any part of it being terrible.
I do remember suddenly being thrown into a world that seemed terrifying and unfamiliar. It was certainly not what we had hoped for or planned. We were scared, overwhelmed, and completely unsure of what the future would bring.
We had no idea what to do, and we knew for absolute certain that we were going to face years of as-yet unimagined difficulties. But we learned immediately that we had to get busy educating ourselves, being proactive, and working hard on their behalf. We also knew that we couldn’t give up. That was not an option. Because we loved them. Because they were ours. Because it was our responsibility.
Each November during prematurity awareness month, these feelings come crashing back in on me. This November—more than any November since 1991—those feelings of fear and uncertainty have again overwhelmed me. So again, I’m looking to the lessons my preemies have taught me. I am remembering that we must get busy educating ourselves, being proactive, and working hard on behalf of those most vulnerable. We can’t give up. That is not an option. Because we love this country. Because it is ours. Because this is our responsibility.
And now my preemies, who fought so hard for life, are in this fight, too.
Happy, happy birthday, Isaac and Molly. You are my heroes. I love you more each day.
*Those who know me know that I’m not really saying “Holy Crap” here.
From 24 weeks to 24 years
Another birthday. They say your “golden” birthday is when you turn the age of the day of your birth, so technically Isaac and Molly celebrated that golden birthday seven years ago. But this one seems more golden or magical or full circle somehow. My 24-weekers are 24 years old. How did that happen?!?
Ok. I know how it happened. I blinked.
Today was a rather low-key day. We’re having our official celebration tomorrow because Ike had to work tonight (at his new job—note the almost put together tux). Don’t worry, they got a couple of little treats throughout the day, but the presents will come tomorrow, when almost everyone will be around, except the college boy. If you had asked me 24 years ago if a MikeAndOllie birthday (or any day) would be low key, I wouldn’t have believed it.
I didn’t believe much that day, which was anything but low key. I’d been in the hospital for 11 days, trying to stave off labor with mind-warping tocolytic drugs. We thought I had settled in for the long haul, though that was wishful thinking. Isaac’s amniotic sac had ruptured and, in most cases, that results in delivery within a week. My contractions had started up again that Sunday, but I ignored them as much as possible, wishing them away, trying desperately to believe there could be power in denial.
Isaac shoved his way into the world—bruised, bloody, and not breathing—at 7:01 p.m. Initial APGAR score—0 out of 10. Our family lore has it that he convinced Molly to follow 28 minutes later, and that that was the last time he has ever won an argument with her.
Family lore aside, I remember each and every minute of that day while I was conscious. The thing is, I wasn’t conscious the whole time. After Ike was born, my labor shut down completely. Kenn thought it would be a great idea to “leave the other baby in there to cook a little longer.” My medical team disagreed, saying we would assuredly lose the pregnancy and possibly my uterus. They knocked me out for a possible emergency c-section that was avoided. I’m glad I wasn’t awake for those particular details.
When I woke again in the recovery room, I learned that Molly had joined her “big” brother at 7:29. Kenn wanted me to go up to the ISCU to see them as soon as possible, just in case they didn’t make it through the night. Unfortunately, I went into shock, complete with vomiting and the shakes from head to toe. More drugs and I was gone for 12 hours of delirious nightmares. I didn’t get to meet my daughter until the next day.
So it seems somehow appropriate that we are celebrating on the day after their birthday this year, since their actual birth day was not celebratory.
In some ways, 24 years is a long time ago in terms of the care of extremely premature infants. Isaac and Molly are two of the oldest surviving 24-weekers. Those 11 days I spent in the hospital increased their chance of survival approximately 2-3% each day. In other ways, not a lot has changed for 24-weekers in all that time; it’s still a frightening and precarious way to begin life. According to the March of Dimes, 50-60% of babies born at 24 weeks survive—daunting odds. Some studies indicate that as many as 54% of surviving 24-weekers develop moderate to severe developmental disabilities.
We know we are lucky. We know we benefitted from incredible care at the Evanston Hospital Infant Special Care Unit (NICU). I write a birthday post on this blog every year to remind myself to celebrate.
I also write to remind everyone that, in addition to being Isaac and Molly’s birthday, November 17 is World Prematurity Day. More than 15 million babies are born prematurely every year. If you want to help us celebrate, consider helping the effort to prevent prematurity worldwide. The March of Dimes is a good place to learn more.
Happy birthday, Ike and Molly. You (and your brothers) are still the best birth day presents I can imagine.
Will’s Way Foundation Helps Preemie Families
I just learned about this cool program for preemie families from a post on AnnyWorld.
“Will’s Way devotes money and energy to supporting families with babies in the NICU. As Britt put it: “We try to give parents one moment to feel normal.” Will’s Way accomplishes that by providing “milestone meals” to parents, such as when a baby reaches a goal weight, or gets off oxygen, dinner at a local restaurant to get them out of the hospital, and in one case, threw a wedding dinner for a couple who got married while their baby was still in the NICU.”
Read the full post on AnnyWorld and more about the Will’s Way Foundation.
Taking Care of Preemie Moms
Twenty-three years ago today was our last day on the NICU at Evanston Hospital after more than fives months. While I can’t remember much about the last week of my life, I remember almost everything about those long days long ago. I know full well that without the expertise of their excellent caregivers, Isaac and Molly would not be here today. But I knew even then that those caregivers were taking care of Kenn and me (especially me) even as they cared for our children.
I’ve been fortunate enough to stay in touch with many of those caregivers, and even more fortunate to have developed a 23-year friendship with one of our primary care nurses, Jill Miller Wilke. Jill quite literally saved my life when we were on the unit—finding answers for me when she didn’t have them herself, offering support and comfort, crying with me, making me laugh, and fighting tenaciously for my babies. She has gone on to have an extraordinary career beyond her 15 years as a NICU nurse. She has worked on the PICU (pediatric intensive care unit), as an emergency room nurse, a sexual assault nurse, and an organ/tissue donation liaison. Jill is now the lead educator for Bereavement Services, developing and presenting training programs for medical professionals and support personnel.
The other day, she texted me to let me know that she had written a guest post at Preemie Babies 101. While she generously credits me for having inspired the post, I can tell you this is 100% Jill, still taking care of people better than anyone I knew. Preemie moms (really, all moms), should read her post and take her words to heart. Thank you, Jill, for this and all you do.
{Professional Insight}: Loving Yourself
by Jill Miller Wilke, BSN, RN, CPLC
The month of February is full of roses, dinner dates, love letters, champagne, and sugary delights in heart shaped boxes… Not exactly the things that a mom in the NICU—sitting in a rocking chair, watching numbers on a monitor, praying her baby will be OK—is experiencing.
It’s not uncommon for a NICU mom to feel isolated and alone. Most people don’t understand what it’s like to sit, day after day, waiting patiently for a glimpse of little eyes opening, for the opportunity to snuggle, for a chance to be a parent and feel loved. As a NICU nurse for 15 years, I have heard mothers blame themselves, beat themselves up, and diminish their role as a parent, but I’m here to tell you: you are a hero. (read more)
Mike & Ollie 