Before she was baby Bea, she was baby “B,” the name applied by doctors to the smaller of our identical twins that we learned first about in June 2017, and from the very beginning we worried about her health. Megan’s OBGYN had identified potential complications fairly early in the pregnancy, and so twice a week that summer, she and I trekked to Glen Ellyn or Downers Grove to visit the Maternal-Fetal-Medicine specialists for ultrasounds in order to closely monitor the growth of baby A and baby B. What concerned our doctors most was the disparity in amniotic fluid available to each twin. In a healthy twin pregnancy, each baby will have roughly equal space within the womb, roughly 4-6 centimeters. In our case, baby A usually measured 6-8 cm of fluid space while baby B hovered close to 2cm. If you’ve never looked at an ultrasound, they are not easy for the untrained to interpret, resembling something approximating a combination of a Rorschach test with the static of on old untuned television set. What Megan and I could manage to discern was the small amount of room baby B had to swim in – in short, it looked cramped in there. What this meant, we would later be forced to discover, is that baby B’s lungs would not be able to develop as fully as her sister.
Baby A and baby B became Alexis Rose and Beatrix Reid on September 5, 2017, born via c-section three months earlier than their projected due date. They were admitted immediately to the Hinsdale Hospital NICU, and despite a busy schedule of teaching and coaching, I visited them every single day of their three and a half month stay. Alexis was sent home from the NICU on December 20th of 2017, and Beatrix joined her three days later.
We were nine months a happy family before Bea was admitted to the ER on September 19th and was diagnosed with a virus and bacterial infections. Ultimately, those illnesses battered her (already weak) lungs and contributed to a secondary diagnosis of Acute Respiratory Distress Syndrome from which she was unable to recover. She died on October 19th.
After Beatrix was admitted to the hospital, we realized we’d need to restructure our daily schedule in order to be available to be bedside, and so we made the expensive but reassuring decision to have Bea’s twin sister Alexis join her sister Clio at daycare. We’ve always loved Clio’s teachers and knew that Alexis would be in good hands there. In many ways, this decision worked very well: Clio absolutely loved being able to play her big sister role at school and insisted she take the lead when we picked both girls up from school each evening. Unfortunately, the safety and love within the walls of Kindercare did not extend beyond the entrance doors, as Megan sadly discovered. One of the first mornings that Megan dropped off both girls, she returned to her car to discover the diaper bag she’d left in the front seat was missing, and with it, all the precious contents contained therein. In the five minutes it took for her to bring in both girls, a thief had absconded with the beautiful quilted satchel, a gift from my social department to celebrate Clio’s birth, along with Megan’s computer, her wallet with all her credit and identification cards, our address book, and 20 hand written thank you notes which only needed to be stamped and addressed. The loss of the address book hurt most of all. I’d kept it since high school, and it contained addresses, phone numbers, and email contacts for every person who’d been important in my life over the past two decades. And not only that: it also contained a recently hand written list of every username and password for all the secured websites we utilized-our bank accounts, insurance, social media.
A confluence of factors made this crime not only possible, but substantially more painful for us. Megan usually locked her car when entering day care, but, with so much on her mind, forgot to do so in this instance. She often did not bring her diaper bag with, but happened to have it on this day. That very morning she’d put in the thank you notes she’d written to express gratitude to all the people who brought presents for the twins on their birthday. All she needed to do was write the addresses on the envelopes, which explained why my address book was also in the diaper bag, a foreign location for the leather bound book which almost always resided in the top right hand drawer of the desk in our guest bedroom. On literally no other morning could the thief’s act have been worse.
So now, with one daughter critically ill in the hospital, we were forced to expend energy cancelling our credit cards, meeting with police officers, contacting our insurance company. We were victims of actual theft, with the real possibility of being additional victims of identity theft.
As it happened, whoever nabbed the diaper bag must not have looked too closely at the contents within, perhaps grabbing what loose cash was available and discarding the rest. So far as we know, none of our on-line accounts was compromised. Yet, it was Megan who later came to the sad but profound reflection that we were in fact simultaneously suffering a far more agonizingly painful identify theft: being robbed of our joy in being parents of twins and forced instead to take on a new identity of bereaved parent. After all, credit cards can be replaced, thank you notes rewritten. We can’t, though, replace our deceased daughter. And we’ll never again get to derive such happiness from pushing Alexis and Beatrix around in their double stroller, secretly pleased every time a stranger offered a cliché’d comment (which was often!) such as “you’ve really got your hands full there!” With what satisfaction did we relate to new acquaintances our story of being twins who gave birth to twins – it became a foundational part of the narrative Megan and I told about our relationship. The label of ‘parents of multiples’ was one we’d worn with pride.
While the theft happened suddenly and unexpectedly, the realization that Bea was dying dawned gradually. Indeed, one of the worst parts of seeing Bea die was not initially knowing how severe her sickness was. She’d been hospitalized due to breathing difficulties twice before, but each time was released after only one day of observation. When we brought her to the hospital, we did not know it would be the last time we’d get to hold her she while she was still alert.
That month of her illness was the hardest I ever endured (Read: my updates on her health during this time). In that first week, I simply expected to hear each day news of her improving from her illness, but in fact, she grew sicker. Rather than being able to wean her level of oxygen, she ended up needing even more support. At first, our doctors believed this was just the nature of the illness, that infections tended to peak after 7-10 days and that once the antibiotics kicked in, Bea would be back on the road to recovery. And there were days where it seemed Beatrix was turning a corner. We’d have moments of hope, where a sense of normalcy would slowly seem to be resurfacing, only to be faced with setback a day or two later. This cycle of fear, relief, hope, than devastation repeated itself several times – it became a trap that proved impossible to escape.
How Beatrix experienced this period will always be unknown to us, though I would like to think that she experienced no pain in her month long hospital stay – that she fell into a deep sleep and eventually passed on peacefully. I am grateful that most of Bea’s extended family got to see her in the hours before her death, and that Megan and I were with her in her final moments. Of that experience, I will say little else, as I prefer it to remain private, other than to attest that I consider it one of the two sacred episodes of my life, with the other happening almost exactly one year earlier, when I was able to be present to witness Megan hold tiny Alexis and Beatrix both against her body for the first time.
I am so thankful, now, that I wrote at length about the pregnancy and early arrival of Alexis and Beatrix, and about their long stay at the Hinsdale Hospital NICU as they were happening, as this led to our support network widening considerably, with many, many people adopting the cause of our twins. Aside from writing about them, I shared Beatrix and Alexis’s story with the students I teach and the athletes I coach. I have never been one to adhere to a strict separation between work and home. My shared experience with Megan in raising premature twins became inspiration for stories I would tell our team. On my first day back with the Track team last year (I missed the first four weeks of the season while on paternity leave) I showed all 150 team members pictures of my twins on the day of their birth and pictures of them four months later, offering an explanation for my absence and discussing with them how integral many families of Cross Country and Track runners had been in supporting us, by bringing dinner or babysitting, while they had been in the NICU.
On the day of their first birthday, I wrote the following email to my colleagues in the Social Studies Department:
A year ago today Megan gave birth to our daughters Alexis and Beatrix. As I reflect upon that milestone, I am so grateful for the care and concern shared by so many with our family. As I walked down the halls this morning, I noted the ‘staff charter’ listing the adjectives HC teachers hope to feel. While I would not list ‘attending SEL professional development’ on my list of favorite activities, I can say with genuine sincerity that I do feel SUPPORTED by our school community and especially this department. Thank you for that.
You’ve all heard the expression “it takes a village” and our experience raising Alexis and Beatrix has proven to us the truth of this statement. While Megan and I have been, of course, the twins primary care givers, we owe the health of Alexis and the too-brief months of Beatrix’s health to the genuine and whole-hearted efforts of so many: to the nurses, doctors, respiratory therapists, speech therapists, and physical therapists of the NICU (and, also, the secretaries, maintenance crew, and administrators who allow the hospital to function effectively); to the tax-payer funded state of Illinois early intervention program, which provides heavily subsidized therapy for qualifying families, including any with babies born weighing under 1 Kilogram – including the amazing physical therapist and speech therapist that the girls have been fortunate to work with through that program; to the health insurance we are extremely lucky to have, which has covered literally millions of dollars of medical expense and eased, at least, the financial burden which has stricken other families facing health emergencies in America; to the friends who have babysat for us, brought us meals, lent an ear, sent words of support; and finally to the medical teams at Loyola University Medical Center and Advocate Christ Medical Center who, I know, did everything in their power to try to save Beatrix. I can at least have the peace of mind knowing that every effort was made throughout Bea’s life to provide her the best opportunity to thrive – her death was not due to neglect or cruelty – but simply to the mysteries of human biology. In every environment she lived – the Hinsdale NICU, our home, Loyola and Christ medical centers – she was loved. There is some comfort in knowing that.
On this topic, I’d like to briefly comment on the difficulty of finding the right words to describe Bea’s hospital stay. Often the language of fighting was used to describe Beatrix’s battle with illness (as in describing her as a ‘fighter’), but I think this way of framing her sickness is inadequate. Fighting implies a measure of freewill, the conscious and determined effort to overcome a challenge. Perhaps it is a language suited to describe a patient who had a stroke and is trying to learn to walk again. In Beatrix’s case, she was heavily sedated for her entire hospital stay, essentially in a medically induced coma. What was happening within her body was occurring on a biological level but not a sentient one. She did not die because she “lost” a fight, but because she had the misfortune of being born with underdeveloped lungs. I prefer to think that she shone her light as brightly as she could for as long as she could.
I wrote a Eulogy for Beatrix which I read at her funeral. If you were not there, I’d appreciate you taking the time to read it to gain just a bit more understanding about her life and how special she was to her family and so many others. I feel an imperative to tell her story to as many people as are willing to listen to it. I wrote there, “I know in time that when I think back on this period of our lives, what I will cherish most will be the ordinary family moments.” I wanted to take some time here to record some of my other memories of Beatrix, especially of the time after she was released from the NICU, as I know with time these will only become hazier, in the way of all memory.
Since preemies are more susceptible to illness than full-term babies, we were advised to avoid taking the twins out unless necessary, so they spent most of their time in their first few months after graduating from the NICU at our Willowbrook home. To set the stage, our home, which we purchased in 2012 and have grown to love, has three floors. The basement contains our washer and dryer, storage space, and an amateurishly but lovingly built play space (recently furnished with an easel and mini trampoline). The first floor features our kitchen and living room, a room which once served as an office but now is a play room spilling over with toys, a bathroom, and a guest bedroom which has seen heavy use ever since the twins arrival. The second floor is bisected by the staircase – you walk up and directly in front of you is a bathroom where most nights around 8:00 you will find Clio taking a bath. To your left is Clio’s room which stretches the length of the house from North and South and which she’d be expected to share with her sisters once they proved capable of sleeping through the night. To the right is our bedroom, which is also rather spacious, though less so then Clio’s room due to a south facing crawl space. We have a King bed which we can lie in and see trees swaying out of the north and east facing windows. It is in this room where we built two mini cribs for the twins to sleep in at night, though by late spring they’d basically stopped using them, preferring the warm spot between mom and dad.
In that early period after the twins were sent home, it was bitterly cold. On one particularly frigid day, we decided it was too chilly on the first floor for us to take the twins downstairs, so we decided to hunker down in our bedroom all day. When it was time for a meal, one of us would go downstairs to prepare it, while the other remained upstairs with Alexis and Beatrix. I recall that day feeling an odd combination of restlessness and coziness.
Bea was sent home with both an oxygen tank and an apnea monitor. We had to attach two leeds to her chest, which were connected to the apnea monitor. The monitor would alert us, piercingly, if Bea’s heart rate dropped too low. Unfortunately, the monitor often rang out due to false readings (if Bea moved and the leed cord was pulled, it could trigger the alarm). There were several late night false alarms where I sprang out bed and rushed to Bea, only to find her sleeping peacefully, right through the loud alarm.
It took time to figure out the best systems for managing Bea’s oxygen needs. The biggest challenge was mobility – she could only move as far away from her oxygen as her tubes would allow, which amounted to about ten feet. After a few weeks of trial and error, I discovered that by moving the location of her Oxygen compressor, I could sit in bed to feed her, which proved preferable to the chair adjacent to her crib that I’d previously used. I’d usually sit with my back to our bed’s headboard, knees bent. I would have Bea sitting so that we’d be face to face, with her leaning back against my quadriceps, a far more comfortable position. Still, it remained challenging to feed Bea, especially at night. Even getting her to finish a 2 ounce bottle was an accomplishment. Sometimes she would fall asleep while sucking, and I’d need to twist the bottle to remind her to start sucking again.
Each morning, we’d have to transition the twins from upstairs to our first floor. In order to do this, we had to momentarily disconnect Bea from her Oxygen, switching her from the compressor to the portable tanks so that we could carry her down. Initially, this made us extremely nervous. Eventually, we learned that Bea could be off oxygen for quite a while before feeling adverse effects, and we became comfortable enough to keep her disconnected for the minute it took to unplug the compressor, walk it downstairs, and plug it in again.
Bea’s first floor perch was in a pack-n-play which we kept in a corner, nestled next to our grand book shelf and a narrow wall separating the living and dining areas. Figuring out that we could put Bea in a baby carrier and wear her around the house was a revelation. While her tube was only ten feet long, the cord for plugging in the oxygen compressor extended another ten feet, so by rolling the compressor to different parts of the room we could double Bea’s living space. We also quickly found out that both twins enjoyed being nestled against us, and it proved our most reliable method of inducing naps. I made many dinners and washed many dishes in those days with Alexis or Beatrix asleep against my chest.
In those first weeks after she was discharged, Bea was assigned a home nurse who came by 2-3 times a week to check up on her progress. This nurse would bring a scale because our Doctors wanted to monitor’s Bea’s weight to make sure she was getting enough to eat. This was in the dead of winter and our front door, since replaced, was drafty, so we’d hastily undress Bea, which is substantially more difficult for a child needing supplemental oxygen (you can’t simply pull a shirt over her head) and quickly wrap her in a blanket for the short journey from crib to scale. Each time she showed weight gain, we’d cheer. The nurse also let us weigh Alexis, so we’d get a second chance for celebration if she, too, was packing on the ounces.
We would bathe the twins in those days by laying towels down on the floor next to the cribs. We’d then lug a wash basin of warm water over from the bathroom and then have the twins take turns sitting in it, carefully massaging Selsun Blue (recommended to address cradle cap) into their scalps.
Keeping the girls fed was a full time job in itself. Megan made a Herculean effort to continue pumping while the girls were in the NICU and thus unable to breastfeed, and we’d take this milk and freeze it to use when the girls came home. Eventually, we accumulated so much milk that we literally had to purchase an additional freezer chest, which we installed in our basement, and this too became filled to the brim. Once the twins came home, we’d take out bottles from the freezer to thaw out for use during the day. As one or the other twin wanted to eat every 2-3 hours, we’d find ourselves at day’s end with an overflowing tub of empty bottles that needed to be washed. Poor Megan had to wake during the night not only to help feed Alexis and Beatrix, but to pump. She kept this vigil until May, when, with our pediatricians blessing, she ceased production. The frozen milk lasted through July, at which point the girls transitioned to being formula fed, which led to a new set of work and expense. Complicating matters was the fact that Bea had different calorie needs than Alexis. As she weighed about one pound less, our Doctor’s recommended her formula be fortified so that she’d be getting 27-30 calories per ounce, whereas Alexis needed about 22 calories per ounce, the typical dose for preemies. So, we’d have to measure out different amounts of the formula powder into B’s bottles (2 scoops for every 3 ounces) than for Alexis (2 scoops for every 4 ounces) and then make sure we labeled the bottles so each girl got what she needed. This could occasionally be confusing, as when a bottle that we’d written an ‘A’ on with a black sharpie got washed and reused, sometimes capped with a white top with a ‘B’ on it. When one of us set out on the task of bottle washing, the other would be in charge of the three young girls, so this chore was often put off until the girls finally all went down to bed, the final obstacle between us and the precious commodity of sleep.
I’d describe these days as exhausting but wonderful. I returned to school around President’s day, with the worst of winter behind us, and Bea newly free of supplemental oxygen. I find this period from late February through the end of May to be the hardest to draw memories from, perhaps because I saw the twins only a few hours of each day. I do remember the first time that Megan brought the twins to a track meet, our home McCarthy Invite held the first weekend of each May. It was a beautiful night, and despite my efforts to reserve a close parking spot for Megan, a miscommunication led her to parking in front of the high school, a quarter mile’s walk from the outdoor track. I was able to meet her and walk with Clio while she pushed the stroller trackside. I was so proud to have my whole family there to show off, despite the fact that I had to divide my focus between my roles as coach and dad.
I loved, also, coming home from school in spring as temperatures began to rise and finding Megan laying on a blanket in our front yard with the twins and Clio next to her. We’d have family ‘happy hour’ which often involved a juice box for Clio, formula or milk for Alexis and Beatrix, and a beer or gin and tonic for Megan and I. It quickly became a favorite summertime ritual.
Then, there was Bea’s ‘kicky legs.’ We learned from our physical therapist that Bea had a stronger back than Alexis, while Alexis had stronger abdominal muscles. As a result, Bea kicked her legs a lot more than Alexis. If she was on her back and not asleep, she would almost always be in motion. Bea also took to rolling before her twin. A few times we witnessed her roll from her front to her back. We’d cheer for her which would make her smile. By the summer, she started rolling to her side when we’d put her in her crib at night. Alexis now prefers to do the same, each roll to the side reminding us of her sister.
Like Clio, Bea had moderate Plagiocephaly, which basically means she had a misshapen skull. To rectify this, she had to wear a helmet which was molded to place pressure on certain parts of her head.
Her clinic was in Lombard near Yorktown mall. Since Alexis did not need a helmet, she sometimes came with, and other times stayed with one parent while the other took Bea in. Over the summer, Megan and I established a nice routine of taking Bea to her appointment and then heading to a local café for lunch. We’d sit and eat while the girls slept or played peacefully in their stroller. The café had comfortable seating areas, including a couch. I recall sitting with Bea on my lap, reading Harpers, and sipping coffee. It doesn’t get much better than that.
A movie I have been thinking a lot about since Bea died is “The Descendants,” a film starring George Clooney as a father dealing with grief while also trying to raise his two daughters. The film is directed by Alexander Payne (who also directed “About Schmidt,” “Sideways,” and “Nebraska” and who depicts the messiness and beauty of familial relations as well as anyone). In the movie’s final scene, Clooney sits on a couch with one daughter on each side, watching a movie. We are left with the understanding that it is these ordinary moments, not the grandiose or dramatic ones, that make life most worthwhile.
On a few rare and special occasions, Megan and I would sit on the couch, each of us with one twin on our lap and with Clio between us, watching one of Clio’s shows – almost certainly Daniel Tiger or Doc McStuffins. I’d never have chosen to watch these kid programs on my own, yet for those precious moments, there was no place I’d rather be. Clio would add to the poignancy of the scene by declaring “we’re sitting together as a whole family!”
Now, at dinner, when we sit down as four instead of five, Clio will still sometimes make similar declarations. It is bittersweet when she does so. I’ve also been thinking in recent days of a political cartoon published honoring the late President George H.W. Bush. In the cartoon, he has landed his world war II era plane in heaven, had disembarked, and is being greeted by his wife Barbara and daughter Robin, who died of Leukemia at age 3.
I had not previously known the Bush’s lost a child. Here was a couple who resided in the White House, saw one son grow up to do the same, and another become governor of Florida. And yet, the cartoon implied, in the final analysis what they thought about on their death bed was the daughter they never had the pleasure of raising. I am not sure if this cartoon gives me comfort or brings sadness, but it has certainly stuck with me.
In some ways, life is simpler now. Raising three kids under three, including preemie twins, was so hard. I realize this even more now, knowing how exhausted I still get attending to Alexis and Clio. Alexis and Beatrix had a lot more needs than typical babies. Since her birth, we’ve never once had to take Clio to the ER. Since they were released from the NICU in late December of 2017, we had to take Beatrix to the ER four different times. Alexis, for her part, has been to the ER and/or hospital three times just in the past five weeks. Most babies are eating solids by about 6 months, which means they are fuller at night and thus can sleep for longer blocks of time. Beatrix had only begun eating purees before her fateful final trip to hospital this past September, and Alexis’s diet continues today to consist largely of formula. I haven’t had a restful night of sleep since the twins came home from the NICU. Towards their first birthday, each twin would typically wake twice, on good nights, for a feeding. When one or both were congested or had a cough, they sometimes awoke hourly or remained awake and fussy for long stretches of time, occasionally requiring a fifteen minute Nebulizer treatment before they could fall asleep again. And then I’d be up at 6:00 am for work, and Megan would be left to manage all three girls. I’d teach all day, then head to practice, and return 11 or 12 hours later, exhausted but knowing there’d be no chance for rest. The challenges of parenthood are most certainly not evenly distributed.
But here is the thing: raising two kids is expensive and exhausting, but it is less expensive and less exhausting than raising three kids. I would give anything to have back that extra exhaustion and expense. I recall a conversation I had with a colleague when Megan was pregnant with the twins and we knew of the potential for complications where I told him, “I’m rooting hard for the least financially secure future.” Even then, I understood, the sense of purpose in raising children was a far worthier goal for me than the accumulation of wealth.
It is natural after one has endured tragedy to reassess ones’ priorities and to reflect upon the choices one has made. In the aftermath of Bea’s funeral, I have thought a lot about how I have devoted my time, what I have valued, and how Bea’s death will change me and the lives of my family members. One question I’ve considered is whether to continue coaching. Should I be spending every extra moment I can with my wife and daughters, knowing how precious life is, how short it can sometimes be? Here, the conclusion was not difficult to arrive at: yes, I should continue to coach. What Bea’s visitation and funeral laid bare was just how wide our family’s network of support was. By sharing my time between my own kids and the kids I coached, I believe all were enriched.
I think back now on my life much differently than I did just two years ago. I realize now that I skated through life for my first thirty five years. At age 35, I’d accomplished most of what I’d wanted for myself. Between 2010 and 2015 I’d gotten married, purchased a home, finished graduate school, achieved a major life goal of being part of a state championship cross country team (then did it again), was named head track coach, and became a father. I loved my job and was in excellent physical shape (during that time frame I had a streak of running 964 days in a row, with each run being at least 4 miles but averaging closer to 8). The one major stress of that period was a long delay in beginning the family we always dreamed of: it took three years and eventually an in-vitro fertilization procedure before Megan became pregnant, but on November 19 of 2015, Clio was born, and life seemed just about perfect.
A game Megan and I have played throughout our relationship is to ask: what would 18 year old Noah think of 30 year old Noah? What would 22 year old Megan think of 35 year old Megan? We always could answer smilingly that our younger selves would have been thrilled to look into the crystal ball to see where we’d ended up. It has been said often by those who endured the pain of losing a loved one: it is better to love and lose than to never have loved at all. What would happen if 18 year old Noah were given a choice: here is your life at 38. You’ll have most of what you want, but your wife will give birth to premature twins, who you will both come to love fiercely, and then you will become a helpless observer as your dear Beatrix dies after a month of hospitalization. Or, you could pick the life behind door number 2?
Without hesitation, I choose the first option. Which is to say, 18 year old Noah would still accept what life had in store for the next twenty years, would be grateful, but also sad.
Throughout Beatrix’s illness, I was on the phone often with my friend Alison, a Doctor working in the PICU at University of California San Francisco. Since she worked in the area of pediatric critical care, she became an invaluable resource, Bea’s strongest advocate, and a huge source of emotional support. We’d first met in college as we both ran on the cross country team, and became housemates with a couple other teammates during junior and senior year. I remember a conversation I had with her back in those days where we were discussing what we wanted out of life. I said I hoped to be happy, and was surprised to hear her say she did not necessarily agree. I understand her perspective better now. Happiness is an emotion that is enjoyable to experience, but it must find you, not you it. What is more valuable is to love and be loved, with all the pain and worry that invariably involves. This is why a particular Raymond Carver poem seemed the most appropriate for Bea’s death announcement. Carver wrote And did you get what/You wanted from this life, even so?/I did. And what did you want?/To call myself beloved, to feel/beloved on the earth. He wrote this as an old man in the twilight of his life, but does it not apply to all of us, regardless of age? Bea will never get the chance to go to school, to grow old – but she was loved – oh, was she loved! – and in this, her life achieved perfection.
Read more: Bea’s Funeral Program