I have assured many a busy parent that their house does not need to be big and beautiful and clean for them to have beautiful and meaningful family portraits made at home. If ever there was a way for me to tell you this, it’s with my own family’s story, as my wife’s maternity photos and most of the portraits of our new son have been in the hospital. But I dare say they are beautiful—at least I can say for certain that they make my heart sing, and they are the building blocks of our new family’s history.
However, my motivation in writing is deeper than that; I need to tell our story. I want to offer it up for those who might need it.
During many uncertain moments in my wife’s pregnancy and our son’s stay in the Neonatal Intensive Care Unit (NICU), we were nourished by the stories of others. Stories of hope and stories of loss were meaningful to us. We knew another family’s story was not going to be our own happy ending or tragedy, but they still helped us understand—and accept—the many possibilities before us. I’m taking this time aside from my family and my work to write this—a humble offering that I request you share with those who might be on, or have traveled, a similar journey.
Ours begins with a three-year $20k+ fertility struggle, swells with joy at the news of a healthy fetus, plummets with the discovery of an “insufficient” cervix, and stretches painfully across 9 fear-stricken weeks of bed rest before 70 semi-steady days in the NICU before it ends—and re-begins—here, with this happy baby in my lap.
After much discussion about how to grow our family, my wife and I decided that the best course for us would be an anonymous donor via a cryobank, so (midway through 2013) we began saving and my wife began the necessary screening.
If you’ve met my wife you won’t be surprised when I tell you at she had flying colors on every type of medical screening. “You’re freakishly healthy,” one nurse said to us.
From the get-go we decided to do IUI office procedures, in which a nurse is inserting the sperm directly into the uterus. Because the sperm was frozen, the window for fertilization is just 24 hours and the chance of getting pregnant with IUI is much higher than if one does it at home. It cost a lot more money and time but we didn’t want to mess around; we were so ready to start a family!
And yet, month after month, hope after hope, the thousands of dollars each attempt took, the inseminations weren’t working. Here’s where one begins a game of statistics and the recommendations that come from them. But the math isn’t about you, it’s about giant pools of people over time, some of whom have some things in common with you. We were told to try so many times, then try X, or try a new donor, or maybe our timing was off. As a same-sex couple with state sponsored insurance, our journey was slowly draining us financially.
Some people in our life would question why we were trying so hard for one of us to get pregnant when there were two uteruses in our relationship. It became a huge sum of money and years of frustration, but it mounted slowly. And there was never a reason she wasn’t getting pregnant, never a concrete reason to stop trying. We were always encouraged that it would happen next time. How could I look at my wife, this beautiful person who wanted to create life, and tell her that there was a cap on frustration or money that could be spent on her deep-seated desire?
After thousands of dollars out of pocket on fertility tests, a problem was discovered—benign uterine polyps. There was great relief because for the first time we had a reason, and there was a solution: remove them. She had a procedure, then we were told to try inseminations again.
And try we did. Fifteen IUIs in total. Three times we ran out of sperm from a chosen donor and would have to start over again. She began having bloodwork done to find out if she was ovulating—she was. We were told yet again, “You’re freakishly healthy.”
The months bleed together, and it just so happened my wife had begun a new job, one with health benefits. As a matter of course she had to have one of the tests redone in order to activate coverage for the insemination costs. Through that we discovered that she had polyps again. No one had thought to look for that, as I guess it’s rare. So she had the procedure again, and this time the surgeon was excited about a new tool she could use to lower relapse. “Yay?” we thought to ourselves.
So surgery again, and we begin to try again and OH MY GOD WE’RE PREGNANT. Just like that, the first try, she was pregnant.
Ever so cautiously, we smiled to ourselves. After all we had been through, we kept the news close to our chest. But the weeks went, on and we celebrated that she felt so sick (as everyone says lots of first-trimester morning-sickness is a good sign). We laid low as much as we could through Christmas time.
My wife’s birthday is in February, and as she was 14 weeks along we used the opportunity to share our good news.
The ultrasound that changed everything
Quite a few moms asked eagerly, “When is your ultrasound?” and I would tell them the date of our appointment. I wasn’t sure why they wanted to know—after years of medical appointments, this was the next one to confirm everything was on track.
As we began to see our little baby move, with 10 fingers and 10 toes and even a face turned out at us, I realized why everyone was so excited for us. The 19-week ultrasound reveals the baby and their world in detail and form that previews a true live human being. It’s nothing short of exhilarating. We met with a genetic counselor to review some things, as they would be looking for signs of genetic disorders, and we got good news after good news about what the tech was seeing. Our eyes were filled with happy tears.
Because my wife was over 35 they have an OB look at the ultrasound right away. A kind and cheery woman introduced herself and said she’d take a look. The tech began a vaginal ultrasound, and we saw the OB freeze. So we froze. She opened her mouth to speak steady, concerned syllables and my wife grabbed my hand; before we understood what was being said we could sense it was bad.
“Have you had any belly pain? No? Good. Fevers? No? You’re sure, you haven’t had a fever in recent days?”
To be honest I can’t remember the order of words and revelations, I only know what she was beginning to tell us. Her cervix was dangerously short. It should be 3cm or more closed at this point in the pregnancy and it only closed 3mm. The OB feared there was an infection, and when we asked her for the most honest assessment of what we were facing she said there was a 50% chance we were going to lose the baby. Our hope was in a procedure called a Cerclage Rescue, in which the surgeon stitches the cervix closed with a band even after the cervix is dangerously short. We were told to immediately go to Tufts Labor and Delivery floor to undergo the surgery that same day.
Walking into a Labor and Delivery unit when you’re half-prepared to lose your baby is… distressing, to say the least. As we heard the cries of newborn babies, we tried to stay focused. We tried to wrap our brain around what was happening. After getting somewhat settled, it was a number of hours before the concerned-looking attending physician came to talk to us. He was blunt that we were not a good place, and that while the surgery was our only hope of getting to a viable week for delivery, its success wasn’t guaranteed. She was only 19 weeks along and an exam showed the cervix was already open a bit. The amniotic sac could break in the surgery… on and on we tried to understand it all. Even though the surgery was deemed necessary, he still did his due diligence in giving us all our options, which to our alarm included aborting the pregnancy. He and others kept referencing the fact that our pregnancy was “desired”—in our world there wasn’t any other kind! But the conversation was a reminder that some don’t arrive at pregnancy on purpose or with a loving partner by their side. In that respect, the conversation gave of a flash of gratitude for the position we were in.
Nine weeks on her side
The surgery was initially successful, and it was hoped that partnered with doses of progesterone her cervix would lengthen. It didn’t. The amniotic sac was funneled down to the stitch itself, with Baby’s head precariously pressing down. It was a fragile position—so fragile that my wife was instructed not to sit up except when eating and going to the bathroom. We were also told in detail when to expect the baby to be “viable.”
Our OB told us we had to get to at least 24 weeks gestation. At 24 weeks there’s a 30% chance of survival and 10% chance of “good survival.” “Good survival?” we struggled to comprehend. We were walked through what might happen if baby came at 23 weeks, and asked if would we want to take extreme measures to resuscitate a baby who might be on a ventilator for life.
We tried not to look ahead at all. When I had to look at my calendar of weddings, I’d wondered whether I might be celebrating parenthood or in mourning when these dates arrived. Would my wife be on bed rest, or in a hospital? We tried not to look ahead. We counted our blessings, of which there were many: family and friends who brought food and walked our dog, and stepped in to cover commitments I had to cancel. Our long fertility struggle had solidified our relationship in a deep way that allowed us to draw lots of strength from each other. There was the fact that her pregnancy could be saved at all—not everyone in this country, let alone in the world, has access to the level of expert and compassionate care we received.
At our weekly meetings with our OB, the news was never good but never tragic—cervix still short, Baby getting bigger. In fact, one of the best blessings was that Baby himself (though we still didn’t know the sex then!) always looked great. We could see 4 chambers of the heart beating strongly. His head was always sitting heavily on the cervix—poised for his entrance, which we prayed would not be too soon.
We made it to the 24-week milestone and contemplated again: what did “good” survival mean? What would it mean for our lives, and our child’s life, to have a not-good survival? My wife had a course of steroids in case the baby did come that week (the steroids would help the lungs be more developed). Our OB seemed sure that Baby would come any minute; she said, “I keep thinking I’m going to see you when I’m on the Labor and Delivery floor.” Needless to say, we were on edge.
We were at 27 weeks and anticipating the next goal: at 28 weeks, we were told, the chance of good survival was 95%. All the organs are developed, and with the miracles of medicine most babies can develop what they need with time and care in the NICU.
Then, at one surprising appointment, we had good news. For the first time my wife’s cervix had lengthened! Baby still looked good. We breathed a sigh of relief. 28 weeks felt so close. The OB told my wife she could begin to move around a bit, and gave me the OK to take a work trip I hadn’t been sure if I should take.
That afternoon I packed my bags and my wife took a nap—suddenly she startled awake from her water breaking! “We’re ready for this,” I said as we grabbed her hospital bag.
Upon arriving at Tufts we learned that her water breaking didn’t necessarily mean she’d give birth right away, but she would be in this hospital bed until she delivered, whether that be days or weeks. We let our world shrink to the hospital. We settled into a corner room with a nice window, “most affordable studio apartment in Boston,” we’d joke. I was glad there were lots of places I could run out and get good food for her.
The nurses kept commenting on our high spirits considering our situation. They didn’t understand: we hardly dared dream of getting this far in the pregnancy. Our feeling was echoed by the surgeon, and others who cared for us during the surgery; they said this was the longest they had seen someone in my wife’s situation (in terms of how short her cervix had been) stay pregnant.
Baby was bigger and more developed. Head still down, threatening to make his move at any time. All the staff at Tufts reassured us endlessly; this was a well-worn path many parents had successfully walked before. One morning I woke up on the hospital cot with blurry eyes, as a nurse left after taking my wife’s morning vitals. I smiled and said, “Happy 28 weeks.” We were patient and hopeful.
That’s when I dreamed of doing a beautiful maternity shoot of my wife in the hospital. The room actually had great morning light and with light colored floor and walls I thought of how we could take portraits that almost looked “normal” by draping a white sheet over the chair and picking the right shirt to cover her IV. I thought it would be beautiful. We’d make the most of what we had to create photographs just as stunning and warm as I do for my maternity clients in their homes and favorite outdoor locations. I kept making plans in my head, and at first she agreed but whenever I asked if now was a good time, she’d say she was too tired, “The only thing I can do for our baby is rest.”
“Yes, rest” I said, yet feeling a fleeting disappointment. I couldn’t force it; there would be no maternity shoot just as there was no baby shower, no third trimester to speak of. Instead I was able to photograph the peace and warmth she created for our baby in that busy sterile environment.
It was week 28 and day 4 when an odd pain suddenly became news that she was developing an infection and Baby had to come out right away. Time was of the essence, so the OB prepared us to have to have a C-section. Then it was determined that a vaginal delivery might be possible, as long as my wife was up for pushing hard—as hard as she could imagine, using all her strength. The delivery had to be quick to get the baby out of the infected environment.
If you know my wife, you know such a challenge will not go unmet.
With an other-wordly force that was both fierce and loving, she pushed our son into the world in 5 intense minutes. I was blown away witnessing and companioning this moment. The doctors themselves appeared surprised by the pace!
His eyes were open! He gave a little cry. We got a swift peek at him before he was whisked to the NICU.
The NICU, our second home
We were able to re-meet him a couple hours later. Two pounds and twelve ounces (actually big for his gestational age), he was able to breathe on his own, so he didn’t have to be intubated, although he would need breathing support for weeks to develop his lungs.
It’s difficult to describe what having a baby in the NICU long-term is like. On one hand it’s a nightmare and I cried every single time I left—leaving your days/weeks/months-old baby just feels wrong deep down in your bones. On the other hand, we found ourselves adjusting to the routine and vocabulary of the NICU. We formed bonds with the nurses who were able to provide the intimate and sophisticated care that we could not.
A side note here as I reflect on making these photographs: To tell the truth I didn’t like bringing my professional camera to the NICU. If you know me well, you know I usually don’t bring my camera around in life in general. When going the NICU, I always felt desperate to just be there. But I forced myself to prep my camera; I knew this experience would become a blur and that we as a family would need these photographs—not just to remember but to understand and appreciate what happened.
What I didn’t anticipate was how meaningful, and even useful, these photographs would be “in the now.” So much was happening so quickly that photographs were the best way to let our families know what we were experiencing, and to receive support.
I think about that with the photograph below because my mom commented to my wife, “You look so happy.” The comment stopped me in my tracks because it was such a stressful time, but it made me think: yes, she is happy. He made it and they are together—that’s all that’s important.
We balanced extreme gratitude for the birth of our relatively healthy son with the awareness that it could change at any moment. Some days he gained weight, and some days he lost some. There were many signs and symptoms that were attributed to his gestational age (like a stage one intraventricular brain hemorrhage and high blood pressure) that could escalate at any moment. There’s always the looming possibility of infection as well. For this reason, when people asked, “How is your son?” I often didn’t know the answer. Good, for now; very good, but precarious.
We were reminded of this when we transferred from Tufts Medical Center to Beverly Hospital and we were gifted a care package filled with little helpful items for life in the NICU. The package was a gift from a family whose premature son had died. I was blown away that a family who lost their child were still so grateful to the hospital that they created this gift.
Luckily my wife was able to find a way to be there at our son’s side for every single one of his 70 days in the hospital. For me it was a struggle. I wanted to be there, but I had many commitments, some of which I could reschedule and others, like weddings, which I could not. In fact, the week after he was born I photographed 3 weddings while my wife was discharging and we were displaced from home due to construction at our apartment. To my own amazement I was able to be present and give my all to every couple, as I have for each event during the last 10 years. I was tired, though, and missed my little guy immensely. I was touched when all of my couples and their families asked after him. Perhaps it was good to be working, because that early on there wasn’t a whole lot I could do for him. I was able to hold him on some visits, and I held down the fort so my wife could be with him all she needed.
Day by day he grew and was weaned off supports.
The last bay he was in had a big west-facing window and we could actually enjoy the sunset with him. The NICU happened to be very quiet in that last week and by then we were doing feedings and changing diapers on our own. The NICU was all we knew at that point and we were experiencing the most freedom and quality time yet. Though we were exhausted, we had a lot of joy as we were getting to know him better.
After 70 long days his homecoming felt sudden. But we couldn’t have been more ready.
At home we entered the sleepless and joyful phase all newborn parents know, through which you live life in 2- to 3-hour eat-poop-sleep cycles (we are still in this phase!). Our little guy is fascinated by his new surroundings and is still drinking in the newness around him. Unlike many infants, he loves tummy time and can even scoot himself around. He seems eager to begin his life.
Whether he will have developmental delays is yet to be seen (Early Intervention is doing an evaluation soon). Strangely, we aren’t worried.
We’ve learned that the path is well worn. We’ve learned that we won’t be alone in our family’s struggles, no matter how severe they may be.
New parents often talk about feeling a scary incompetence when their child first comes home. We didn’t feel that at all. In the NICU we eased into doing things for our baby, and we were taught by compassionate experts. What new parent wouldn’t envy watching a professional do the first bottle feeding? Having your (many!) questions answered immediately by a neonatologist is much more reassuring than deciphering WebMD!
That is to say: the NICU gave us the unexpected gift of confidence in our parenting, which allowed us to enjoy our homecoming even more.
Yes, we are so tired. Yes, we have burp cloths in every corner of the house, sometimes forget to brush our teeth, and yesterday I poured my hot tea into his bottle, but this is hectic-joyful, which is pure bliss after months of hectic-scary. Life is good!
A chance encounter
On his second night home, our sense of linear time lost, we forgot to feed our dog dinner. We felt awful when we realized it in the morning, and I resolved to give him an extra special walk the next day. I walked him to a beach and brought his life vest (yeah, a corgi in a life vest is pretty cute!). If I throw a ball into the waves he’ll fetch it, again and again and again.
As often happens, a kid came over and asked if he could throw the ball—both of them continued the game for some time! The boy’s mom came over to make sure I was OK with it. I said I was thrilled and how my dog was adjusting to a new baby at home. She asked his age, and as all parents of a preemie know, it can be tough to answer. “Well he was almost three months premature. He’s been here in the world for 10 and a half weeks, but his due date is more than a week away, so he’s kind of 11 weeks and he’s kind of negative one week…”
This mom knew exactly what I meant. She said that she too had a son born early (26 weeks), but she lost him on the tenth day. She said everything looked like it would be fine—it was just going to be a long journey—but he suddenly developed an infection and died.
She asked me more about my son; she said she wanted to hear a happy story, so I obliged.
Hearing her story brought me right back to the first days of my son’s life, when I didn’t know how to answer the question, “How is he?” Because I knew that what happened for this mom could have happened to us at any moment. We stood there together, tears in our eyes, watching her son and my dog play.
With a little more conversation I learned that she was the mom who created the gift bags at the hospital! I began to cry immediately as we both took off our sunglasses so we could really see each other. I felt the intersection of paths that was this moment in time. Her son’s story could have been my son’s story, and my son’s story could have been her son’s story. But it wasn’t. In one moment I felt the entire range of emotions I felt on our journey—fear, sadness, anticipation, hope, doubt, frustration, confusion, relief, joy… and gratitude.
I don’t know how the cosmos is structured and why Life comes and goes when and how it does. Sometimes it seems a pattern and sometimes chaos. I don’t know why I was born privileged into the First World with easy access to advanced health care, and others in the world die of afflictions that are medically simple. I don’t know what our life would look like today if we were grieving instead of parenting. I don’t know why my wife, my son, and I have it so good…
I only know how to be grateful. And I am.
If I can teach my son anything, it will be how to be grateful, and it will start by telling him this story, his story, our family’s story.
For now I offer our story to you, and hope it can be hopeful and helpful.