Five years ago, when he was seven months old, Milo had two major surgeries over the course of two weeks to repair a congenital lung defect and a congenital heart defect. The surgeries were successful, and his recovery was complete. This week marks the five-year anniversary of Milo’s surgeries, and I wanted to share the story of this time in our lives as a new family. Like stories of all new families, ours was full of darkness and brightness, loss and expansion, trepidation and transcendence.
“Once this is over, I think you’ll find him much more robust,” the pediatric thoracic surgeon confidently assured us. We looked at his white hair and his white coat, and we looked at our baby, with wires and IV tubes twisting out of his tiny hospital gown, bouncing up and down in the metal crib: squealing at a green velour frog puppet on his hand that didn’t have the IV. We didn’t say anything, but both had the same thought: “He seems robust now. This is robust enough, actually. We’ll take him home now, please.” We were numb with fear.
The hole in Milo’s heart, in the wall separating his left and right ventricle, wasn’t going to fix itself. What was originally suspected to be a simple heart murmur at birth had, in fact, turned out to be a Ventricular Septal Defect (VSD), a fairly common congenital heart defect that often requires surgery to repair. His cardiologist had hoped, and had urged us to hope, that it might fix itself: that Milo’s growth might outpace it, that it would close on its own. But here we were, about fifteen echocardiograms later, at Children’s Hospital in Boston, preparing to send him into open-heart surgery.
The day before his heart surgery was scheduled, we brought Milo in for a day of pre-operation procedures and paperwork. During a routine chest x-ray, the hospital staff found an abnormality in one of his lungs and decided to postpone the heart surgery until a thoracic surgeon could take a look at him. It turned out that Milo had a very rare congenital lung defect, called congenital lobar emphysema, that was contributing to his trouble breathing and slow growth, as well as putting pressure on his already-strained heart. The affected lobe of his lung would need to be removed before he could have the open-heart surgery to repair the VSD.
Jason and I spent days and days beside each other in vinyl hospital chairs, our elbows touching, quietly bearing witness to each other’s grief and fear. Passing papers back and forth for the other one to sign, holding Milo when we could, writing down our questions to ask the doctors, drinking endless cups of coffee from the Au Bon Pain in the hospital lobby. We always had one eye on the monitors, watching his blood pressure, his oxygen saturation. It was hard, for sure, but there was also a single, common purpose that united us: one that we carried together, for weeks on end. And there was strength in that. Not before or since have we both set aside our jobs, our agendas, our egos, and worked as such a tireless, unwavering team. We were both our best selves for each other during those weeks at the hospital, and even though it seems bizarre to be grateful for such a time in our lives, I am.
The first six months of Milo’s life had been hard. I had a traumatic birth and a very sick baby. We had a new business and had bought our first house. I loved my job but I couldn’t figure out how to continue devoting myself to it the way it required now that I had a baby who needed so much. I was depressed, and scared, and we headed into a winter of so much cold and snow and darkness that I was sure that none of us would survive. Those months in the late fall—while we waited to find out if Milo would need surgery—blurred together in a dark sea of uncertainty, monotony, exhaustion, hard fear, and the bright flashes of wonder and joy that come with falling in love with a new baby.
Seven months of around-the-clock doses of medication in tiny syringes: 0.3mL, then 0.7mL when he finally grew a little bit.
Seven months of the nurse coming to our house once a month to administer the $1,800 Synagis shots in his thin thigh to keep him from getting any respiratory infections: even a cold could kill him.
Seven months of endlessly pumping breast milk, measuring carefully leveled scoops of polycose calorie powder to add to the bottles.
Seven months of incorporating new vocabulary into our daily lives: ventricular septal defect; sedated echocardiogram; pulmonary stenosis.
Seven months of feeding him bottles in the car minutes before he would go into the doctor to be weighed. Pleading with him, “Please drink more. You can do it.” If he had gained even a few ounces since his last visit, maybe they would tell us he didn’t need to have the surgery.
Seven months of wheezing, of watching the white hollows above his clavicles retract with each breath.
Seven months of watching him turn blue if he cried too hard.
Seven months of a brand new person learning to smile, sit, laugh, play peek-a-boo.
Seven months of being new parents.
Seven months of being a family.
And seven months of crippling postpartum depression. I didn’t address this in any meaningful way until well after Milo had recovered from his surgeries, but it was omnipresent in all of our lives. The word “patient” has never been used to describe me, but in the months after giving birth, my irritability reached alarming new heights, and this volatility was only tempered by long bouts of quiet, desperate sadness. I felt numb, yet at the same time sharply disappointed in myself, vaguely aware that I wasn’t meant to live this way, to fail so darkly.
At Children’s Hospital with Milo, the fear would come in waves. Some days, I was drowning. I took a knife to my hair in the hotel bathroom. With Jason, I ate $25 worth of McDonalds in one sitting. When I found out I was too anemic to donate the blood for the transfusion that Milo needed, my feelings of failure as a mother were so sharp that they took my breath away. Once, when I went downstairs to get us sandwiches from the Au Bon Pain, I hid in a hospital stairway, sat on the concrete steps, and dug my fingernails into my upper arms until I drew ten small half-moons of blood. Other days, I could crest on top of it for a while and go to the Starbucks across the street; post updates on Facebook for our concerned families and friends; sleep for a couple of hours in our room at the Best Western, around the corner from the hospital.
At the end of the longest February in history, the three of us emerged from the revolving doors of the hospital, relieved and exhausted. We were going home. Milo had been a model patient in all respects, including how well he had healed after the surgeries. His first surgery, to remove the middle lobe of his right lung, was on February 9th. His open-heart surgery was seven days later, on February 16th. His ribs were cracked open for each surgery. He was put on a heart-lung bypass machine that stopped his heart for almost six hours. Although lung tissue doesn’t regenerate after it is removed, as Milo’s pulmonary system develops, the upper and lower lobes of his right lung will expand to fill the space where the middle lobe was. By the time he is ten years old, he will have normal lung capacity. The hole in his heart was grafted with tissue and although his cardiologist does a precautionary echocardiogram every fall, his heart is completely normal and healthy.
His two surgeons couldn’t have been more different, and I couldn’t be more grateful or indebted to either one of them. His lung surgeon was a confident, brilliant man with thick white hair and the steadiest hand imaginable: Milo’s scar is barely perceptible now. Although he struck me as arrogant when I first met him, I quickly realized that can be a desirable quality in a pediatric surgeon. If someone is going to cut your infant son open and remove part of his lung, you want someone who maybe has a bit of a god-complex. If he had meekly offered, “Well, I’m only human, but I’ll do my best,” I don’t know that I could have gone through with it. Milo’s heart surgeon was a soft-spoken but charismatic, equally brilliant man who didn’t look like he could have been older than twenty-one. Even a cursory web search revealed that he was universally beloved and respected by his colleagues, and by thousands of grateful parents whose children’s lives he had saved. We could not have been in better hands, and I am so incredibly grateful for the care that Milo received.
Once we got him home, and his care rested squarely on Jason and I, the biggest challenge was actually picking him up. We couldn’t put any stress on the two huge incisions on his torso while they healed for the eight weeks after his surgeries, and lifting him under his arms would tug on the skin too much. Have you ever tried to move an eight-month old baby around without lifting him under the arms? Taking a baby out of a high chair, putting them into the bathtub, getting them in and out of a car seat: all of these movements now had to be accomplished by “scooping” Milo with our arms along his back, supporting his entire body from behind. He did not complain. He let himself be scooped around from place to place for two months after his surgeries. He let us gently clean his stitches along the sternotomy scar down the center of his chest, and the thoracotomy scar sweeping from the front to the back of his torso, under his right arm. This, after he spent a month confined to a crib, took his horrible-tasting medicine, and cooed and smiled at the nurses and doctors who took him apart and put him back together again. It is baffling to me that now, at five and a half, he sometimes cannot abide a moment of discomfort. He is totally undone by a splinter, a band-aid being removed, shampoo in his ears. But even in my moments of exasperation (and there are so many), I feel—so tightly—the flooding gratitude that I have this kid at all.
And while I’m on the topic of gratitude, this is something else that has stuck with me: throughout the whole process of preparing for, going through, and recovering from Milo’s surgeries, we were held so lovingly by the most incredible community, and I cannot stress enough how valuable that was, at least for me. During our time at Children’s Hospital, we received over 300 Facebook messages, phone calls, and emails offering prayers, love, support, and offers of food, cat-sitting, taking in our mail, and anything else that we might possibly need. Some people told us they were holding us in the light, and several more simply said they were thinking of us. A bunch of people said nothing at all but just quietly stepped up and ran our business, and did our jobs, and just somehow made it possible for us to not worry about much beyond taking care of Milo. And finally, lots of folks said they were praying for us.
I know that I might lose some people here for even talking about prayer at all. But whatever god you do or don’t believe in, I am stating—for the record—that I felt the power of these prayers. Which is to say only that that I’ve been moved—lifted, even—by a community of friends, family, acquaintances and strangers who set their own lives aside, even for a moment, to participate meaningfully in our collective humanity by making space in their own hearts to share our struggle. I’m not a crazy person who thinks prayer alone can work miracles or cure sick people or heal the world. I also believe in the power of skilled surgeons, health insurance, western medicine, education, advocacy and public policy. Saying that I believe in prayer, is, to me, akin to saying that I’ve been moved by the pure kindness and goodwill of fellow humans, some of whom I love and some of whom I’ve never met. The degree to which I was humbled and, truly, stunned by the kindness and love of the people in our community during this time was deeply powerful, and I would not be telling the true story of this time in our lives if I omitted that piece.
And now, here we are five years later, and we’ve got this nutty kid who is learning to read and write and skateboard and make friends and tell jokes. He makes me laugh every day, and he makes me crazy every day. Every single day I want to be a better person for him. And although this blog can sometimes be a place where my myriad shortcomings as his mother are laid bare, let it be known that I love this kid with a fierceness that rivals any feeling I have ever felt. Happy five-year anniversary, Milo.
One Real Peach. 