"Eva was with us for only 29 days. She never came home. She never met her brother or touched her sister after she was born. We know it may seem unorthodox for us to give her eulogy, but who else can? Most of you never met her. And we didn't really get to parent her in the ways most people parent their children. So for us, this is our final tangible outward act of parenting Eva. We hope you can bear with us because this is something we feel we must do.
We would like to tell you Eva's story, which is our story as well.
We'd planned this pregnancy with some care. We wanted to have our second child three years after our first and we wanted a Spring baby this time. We got lucky, had no trouble getting pregnant, and found out in early August that our latest project would be complete on April 11th. We sort of inwardly congratulated ourselves on such good fortune and, of course, our stellar execution of the plan.
At 8 weeks, we told our parents that we were expecting and my dad asked us if it was possible that we could be having twins. We were just a little haughty and dismissive. We'd already had an ultrasound, after all, and were sure that there was just one baby. At approximately 16 weeks, I had a test called the AFP triple screen, which tests for certain defects like Downs Syndrome or spina bifida. Our test results showed that we were at an increased risk for having a baby with a neural tube defect. We spent that weekend trying to keep our worries in check. We had all but convinced ourselves that it was simply a false positive, likely due to a miscalculated due date. Early the following week, we went to see a perinatology practice for an ultrasound. When we got there, we sat nervously in the reception area wondering if everyone there was as scared as we were."
"Once the ultrasound began, it became obvious what was going on. Before the sonographer said anything at all, I blurted out, “Am I seeing what I think I'm seeing?” I did and in this case, two heads were much better than one. Twins, we knew, were a benign reason for an elevated AFP, so while shocked, we were also relieved. But, the ultrasound took some time. This was okay because we needed a few minutes to absorb the news. We found ourselves talking about whether we would need to move or buy a minivan. And, we did a bit of nervous giggling too. Over the following minutes, however, we started to sense concern on the part of the sonographer. She spent a great deal of time looking for something, periodically mumbling about a “membrane.” She never found one. We were quickly seen by a perinatologist and we proceeded to get schooled in the world of twinning. We learned that we had a high risk pregnancy known as monochorionic monoamniotic (or momo) twins. Basically, our twins were sharing the same amniotic sac, meaning there was no barrier between them at all. The primary risk in this situation is that there is nothing keeping the fetuses from wrapping their umbilical cords together and cutting off their own blood supply.
Two weeks later, during a routine sonogram, we were informed that it looked like one twin also had a congenital heart defect. After meeting with a pediatric cardiologist, we learned that Eva had hypoplastic left heart syndrome, which is fatal if untreated. So, we hit the Internet again and read all we could on HLHS and the three stage surgery that would be required in order for her to survive."
"We prepared for what looked to be a 10 week separation, a time period that included Christmas, New Years, and Noah's 3rd birthday. For all of those occasions, I would be in the hospital, awaiting the arrival of our daughters. This was the standard protocol for managing a momo pregnancy – hospitalization and intensive fetal monitoring, starting at viability or 24 weeks, until the scheduled cesarean delivery at 34 weeks. So, to keep our minds off the fact that we could have a cord accident and there was nothing anyone could do about it prior to 24 weeks, we tried to run all the errands we could and attempted to stock the house with enough provisions to save Dave from having to grocery shop for a while.
Over those weeks I had a lot of time to think and one thought I had daily was that control is an illusion. For people like us, who thought we could bend the trajectory of our lives through spreadsheets and planning and good project management techniques, this was a truly humbling experience.
My hospital stay was largely uneventful. I spent 79 days and nights there myself, punctuated by innumerable visits to my ever-expanding belly by an ever-widening circle of professionals (and icy-fingered medical students). And while that would fit few people's idea of a good time, Dave was home for 79 days – cleaning, doing laundry, cooking - even baking once in awhile - , trying to earn his keep at work, and playing single parent to an energetic and willful preschooler who developed a mean case of sleep problems. Amazingly, Noah was basically potty-trained during this time too. Dave also decided to undertake a few remodeling projects in the house, none of which are quite completed yet, not for lack of trying.
Meanwhile, I contributed to the family unit quite ably in the departments of weight gain and Days of Our Lives coverage. I also learned a little about myself. I am pretty comfortable with solitude, it turns out... and I have a huge capacity for terrible TV watching. But while not a lot happened for me during that time, I did brood. I did worry. I did feel utterly inundated with the voices of the medical staff around me. I got to a point where solitude wasn't just my preference; it was a requirement for any semblance of sanity to be maintained. I share this because it colored my relationship with Eva. Because I couldn't take the dire assessments and wild fluctuations of opinion that I had to hear about during the prenatal period, I simply tagged out mentally and let Dave be the interface with the hospital after the birth. I couldn't do it anymore. Once she was born and I was out of the hospital, all I cared about and wanted to know about was spending time with Eva when I showed up to see her.
The last ten days before the girls were born were the hardest. All of the energy that went into preparing for their birth and ensuring the best outcome was converging in those final moments. The voices were becoming louder and more urgent. Ultimately, the decision as to when the girls should be born was left to us. On the one hand, waiting past the 34 weeks that was originally planned was potentially fatal to both girls, but Eva's best chance for success in surgery lay in us holding out as long as possible. We decided to wait an extra week in the hope that this timing would constitute the best balance for each baby – and for me. Suffice it to say that the last few days were physically grueling in addition to being emotionally strained. That extra week turned into six days. After a false alarm landed me in Labor & Delivery a couple of days before I ultimately delivered, I decided that I'd had my fill of the fun and needed to give birth STAT. As usual, the good people in the high risk perinatology unit accommodated me.
There's not much to say about the birth. It was clinical and quick and there were lots of people there. We were greatly relieved to hear the girls cry right away and to see that they were pretty pink. Eva was not blue, as we'd feared she would be.
"I will add that the birth was fairly stress free, all things considered. Armed with multiple recording devices, I captured as much of the event as I could. Both girls came out within a minute of each other and had pretty decent APGAR scores. I also saw the umbilical cord, which was not nearly as tangled as everyone had expected. It was just a thick braid, with the two cords wound around each other. It looked like they had twisted early on and just grown in that configuration, never getting close to actually developing a knot. There was also an army of hospital staff in the room, attending to Audrey and each baby. After being weighed and cleaned up, both girls were taken straight to the NICU and I followed along. Eva was in Room 4, the room for the “sickest” babies and Naomi was in Room 2, sort of a midway point on the NICU spectrum. She wasn't particularly sick, but not quite ready to be sent home. You know, they had to obsessively watch her, overreact to some spit up, and then make us jump through a few hoops before allowing us to bring her home in the dead of night.
And the NICU was not the happiest place. Each time I visited, I couldn't help but think about how clinical the environment was and that what the babies really needed was more love and attention. Watching what some other parents were going through, I felt lucky that my child “only” had a heart defect.
It was surprising to us was that babies like Eva tolerate their defects well in utero and it seems to take a couple of days or so after they're born for the full impact of any problems they might have to surface. So, if you look at the pictures in the register, you'll notice that Eva seemed to get connected to more and more “stuff” over time. Part of that is the aftermath of surgery, but even before surgery, she was least connected during the first few days of life. Her photo, while in the incubator, is the closest image to a regular baby photo that we have.
Eva had an echocardiogram right away to confirm the diagnosis of hypoplastic left heart syndrome. Amazingly, the result was far better than we expected. Her left ventricle, while small, seemed bigger than it had in utero. With great caution, one of Eva's pediatric cardiologists suggested that we may have the option of a less severe and risky surgery for Eva, with the result of the repair being a more “normal” physiology for her heart. The plan was to wait and confer with the larger team, including Eva's surgeon. The weekly meeting for this team happened to take place on Eva's second day of life. The decision after that meeting was to wait a week, take another scan of her heart and revisit her case at the following meeting. That was fine with us. We had been informed that these surgeries typically shouldn't happen too soon or too late, which meant we were prepared for surgery to happen between a week and two weeks after birth.
Eva did rather well her first few days in the NICU. She was alert and very active and had no qualms about registering her complaints. She didn't like to be messed with one bit and let everyone know about it. Every time I changed her diaper, she seemed to be yelling at me. But she seemed to love to be talked to and would always open her eyes and look at me.
During her second weekend in the NICU, Eva's saturation numbers began to fluctuate. Some of her medication was becoming less effective, but an increased dose seemed to correct the issue. However, Eva now seemed more tired when we went to visit. It may have been a medication, it may have been that they cut back on feeding her breastmilk, it may have been that the whole situation was wearing her out, or it may have been nothing at all. But, she just didn't seem quite the same after that weekend.
We had met with the pediatric cardiologists several times during Eva's stay in the NICU. Each time we saw them, her prognosis seemed to be more positive and the likely surgical path leaned increasingly in the direction of a less drastic repair. Our hopes grew with each conversation as we got closer to her surgery. And during the few times when we were able to hold her in our arms, our bond with her grew. She would sink so completely into our embrace that we looked forward to when we could bring her home and cuddle her until she left for college.
We found out the afternoon of March 22nd that Eva would be operated on the next day and that the doctors were confident about the plan to take the less invasive surgical route. Not only would this be a two-ventricle repair, resulting in a virtually normal heart anatomically, but the team also felt they could forgo the use of any bypass machines, further minimizing the risks to the operation. We were nothing short of excited and happy that we'd be on the path to recovery and normalcy. Many of you know what happened next."
"Eva's surgery would start around 7AM. So, I drove to the hospital to be with her beforehand. On my way, I got into a minor car accident, which delayed me enough that I missed the opportunity to walk Eva to the OR. She arrested on the operating table as her chest was being opened. Like so many transformative moments in life, it was only a moment between hope and despair, between happy go lucky and what now. Dave had taken Noah to daycare and was already on his way to the hospital when he received a call to get there quickly. I was in a waiting area in another building from the OR. We converged in a tiny dirty windowless room on the pediatric floor and were given the second worst piece of news in our lives. They told us that Eva's heart had stopped beating prior to any repair being done. They weren't able to successfully restart her heart, so they immediately put her on bypass and brought her to the PICU. They left us in that room for the remainder of the day, allowing us to freak out and fall apart in relative privacy.
When we were finally able to see Eva, she was a tiny figure in her landscape. She was attached to miles and miles of plastic. She was covered in it. She smelled like it. The whole sight was a shock, making us dizzy and out of sorts. We drove home in a daze. The only thing we could do was hold Noah and Naomi and try to cherish what we had at that moment. That evening, David headed back to the PICU to spend more time with Eva. While by her side, Eva arrested again, although the staff was able to stabilize her soon after. We were prepared by the staff for the worst and for more waiting...this time for Eva's heart to rest and recover, in the hope that her heart would start working again. In the meantime, a heart-lung bypass machine was doing the bulk of the work for her."
"Eva did regain cardiac function slowly. Despite having a smaller left ventricle, which was the focus of all our concern up to that point– they don't call it hypoplastic LEFT heart for nothing -- Eva's right ventricle was weaker and showed no activity at first. The bigger issue, however, over the next few days was that the team could not get her bleeding under control. So, on the afternoon of March 27th we found out that a second attempt at Eva's repair would take place as the first case the next day. The team supporting her felt that she ultimately had to come off the anti-coagulants, which required her to be off the heart lung machine, which required that the original repair finally happen.
We approached the second surgery with more caution and a greater sense of gravity. This was a second chance and an opportunity to get this right. So, we both got up early and went together to the hospital. We arrived at 6:15AM. We talked to her as they were prepping her for the transfer down to the OR. They clamped her crib, her monitors, and the heart-lung bypass machine together and then a half dozen people tried to drive this mess of tubing and pumps and wires and Eva through the hospital. We tagged along, staying to the back of this train and getting to the OR at 7AM. We kissed her, told her all the things parents tell their children at such times – we love you, it will be okay, don't be scared – and went to hang out in a dark corner of the waiting area. They had given us a beeper so we could get updates and we expected to hear that surgery had started. So, we waited. And waited. And Audrey paced. And our stomachs tied up in knots so tied we couldn't eat. We tried to stay calm by reading the newspaper and talking with my folks, but still!
At around 12:35PM, we got word that the repair was successful and her heart had started beating on its own. She would be weaned off bypass. About an hour later, we got another update. Her heart was going strong with only medication to assist it and she was off bypass, but her left lung was collapsed and full of thick mucus, which kept her body from being properly oxygenated. Her surgeon described it as a big "goober", but this goober was seriously putting her at risk. Her lung was suctioned by a pulmonologist, which improved her oxygenation, but the staff was still very concerned. She was put on an oscillating ventilator and moved back to the PICU.
We had been warned a bit in advance that children who are cardiac patients often experience a great degree of swelling post-operatively. For a number of reasons, the trauma of the event can cause the body to react by leaking fluid into the spaces between her cells. This was exacerbated in Eva's case since she needed to receive a fair amount of liquid as medication for a number of different conditions. So, at her size, the effect was pretty dramatic. She looked like a tiny linebacker, and truthfully, this was the hardest sight for us. She ceased to look like our baby. Her whole body had swollen, but the most upsetting was the change in her face. Our little girl's face had ballooned in size. Her little nose was now dwarfed by her cheeks. Her ears we sticking out and her eyes were swollen shut.
She was taking a number of drugs to help her heart work better, to manage her pain, to regulate her blood chemistry. Another effect of her surgery was that her kidneys had stopped functioning. Again, this was a common occurrence and did not overly concern the doctors. But, the longer her kidneys didn't work, the worse her swelling got. To help reduce the swelling a bit and to flush the toxins from her system, she was put on temporary dialysis."
"As each day passed after the second surgery, Eva was slowly improved. Her color, which was a sickly shade of plum immediately after the operation, quickly returned. Her heart showed resilience, with a strong rate and improving blood pressure. Her lungs, too, seemed to get better quickly and the doctors were slowly dialing down the settings on her ventilator and decreasing the doses of her medication. She was moving and responded to touch and our voices.
We were excited and confident. We were told that she was the sickest kid in the PICU and that she might even be the sickest patient in the hospital. But, her situation didn't seem so dire to us at this point. She had made it through major surgery and was on the road to recovery, albeit at a rather slow pace. Each day held a bit of good news and we settled in for the long haul. We jokingly told the staff in the PICU to get used to us since they'd be seeing us around a lot.
We spent as much time as we could with her each day, reading books to her and telling her about what was going on at home. We stepped over and around equipment and tried to stay out of the way, all the while working hard to let her know we believed in her and that we knew she could do it."
"Her last day was her best day post-surgery. I visited her during the day and her numbers had looked better than at any time since she was in the NICU. It looked like she might have begun to pee, but there was only the slightest trickle. Since I showed up right at the end of rounds, the doctor gave me an update on her status and informed me that they were going to do an ultrasound to determine if she might have any blood clots. They were slightly concerned that her swelling was asymmetric and that her head and chest were more swollen than her lower torso and legs. Nothing was said to give me any reason to be overly concerned or worried.
That evening, I went back to visit her to find that she had truly begun to pee, urinating at a higher than expected rate for a child her size. Her swelling had gone down even in the hours between visits, and all the other signs that the staff was tracking looked good. I asked about the ultrasound, but there was no information to share with me. The doctor on call came by and described to me what treatment they would undertake if she did have evidence of clotting and there didn't seem to be any large risks involved. His primary concern about clotting was that it had the potential to be interfering with her ability to rid herself of fluid. I spent my time reading to her and for the first time since the second surgery, I saw her open her eyes. She responded immediately to my voice and she watched me while I read to her. I leaned in close to make sure she heard every word. She fell back to sleep and I had run out of decent material. So, armed with the knowledge that she was doing better than any day yet, I went home in a fairly good mood.
I called the hospital at midnight, just to see if they could share any information on the ultrasound and to check in regarding any treatment they have. There was no new information at that time, but everything changed again within an hour of that last call.
The phone rang at 12:40AM. My heart sank before I even looked to see who was calling. Nobody would call at that time except for the hospital. They had told us early on that they would call us in the event that her situation was bad so that we could be there with her. I answered, of course. The nurse on the phone told me that Eva was having respiratory issues and that it was affecting her heart. The staff was working with her and she might be stabilized very soon, but that we should come to the hospital. I couldn't get a sense for how serious the situation was, but the fact that we got called was enough reason for us to head over to be with her. We threw some clothes on and jumped in the car, leaving Audrey's mom to watch Naomi and Noah. We were silent for almost the entire ride, even as I ran a few red lights. I think we looked at each other a few times and I uttered something like "She will be okay" and "This isn't how this story ends", but I don't know if I even believed my own words. Things seemed bad and I was gritting my teeth in hoping that everything would be okay."
"We watched the team try to resuscitate Eva. It could have been minutes or hours. I don't know. Eva was a four and half pound baby, albeit very swollen at this point. So, watching two doctors alternate chest compressions on her tiny body was awful. For the first time, the toll on her, the fact of her suffering became undeniable. As much as we believed in her recovery, as much as we wanted her back at any cost, somewhere in our souls we knew the outcome. I can't help but think that the doctors kept it all going in part to give us time to accept the inevitable. Eva's surgeon, Dr. Shen, the man who'd been our beacon of sorts, told us we wouldn't be getting Eva back. I didn't say anything. I just hovered over her while Dave made his way to my side. I watched her become slowly freed by her nurse of everything that bound her to this life. And finally, I held her. She didn't look like herself or smell like a newborn, but she was still soft and warm. That was real and I'll never forget what she felt like. Those moments of holding Eva and saying goodbye, of making peace and letting go were the most bittersweet of my life.
We have no experience with this depth of loss. Nor have either of us ever needed to convey the measure of another's life. Sometimes it only seems real because our grief is reflected back at us through other people."
"We can't help but ask why. Why did this happen? How could it be that everything could seem so promising and yet end so suddenly? How could we have been so confident in her recovery and hopeful for her future only to turn out to be completely wrong? I don't have any answers and I don't think I'll find them in the final autopsy report or in any book on coping with loss. We may never truly understand this or there may not be any reason at all. Nevertheless, life goes on and we must as well.
We don't truly know what we've lost. Eva never had the chance to blossom at all and all we can do is fantasize about what might have been. But we do know a few things that we have gained in all of this. As close as Audrey and I have been, the distance of her hospital stay only deepened our commitment to each other. We are clearer about our weaknesses and limits and are more resolved in overcoming them, especially as they pertain to our roles as spouses and parents. And, we have learned to be immensely grateful for all that we are fortunate enough to have, particularly for Noah and Naomi.
We love you, Eva. And you should know that despite our plan for only two kids, we wanted you from the moment we knew you were here.
We miss you. We miss your bright and curious eyes, your skinny little legs, that almond-shaped mark on your right thigh, your yawns and cries, even your dirty diapers. We miss holding you, swaddled in a blanket, and having you fall asleep in our arms. We miss the way you always seemed to melt into an embrace. We miss every milestone we won't celebrate, every dream you'd share with us, every scrape or A+ or broken heart. We miss every day that we aren't going to spend together, all the opportunities and moments that we won't share, and all manner of things that have not happened yet.
Eva, we mourn your passing. We mourn the death of a daughter, a sister, a granddaughter, and a niece. We mourn for never being able to bring the five members of our family together in one place. We mourn for Noah, who is not quite ready to understand this, but who will someday. And, we mourn for Naomi and for the unknowable sense of loss that she will live with as Eva's twin.
Eva, we promise to keep your memory alive. While we four go on, we will always be a family of five. We promise to honor you and to never use this loss as an excuse. We promise to not let our sorrow keep us from experiencing joy and sharing it with others. We promise to not burden your brother and sister with our hopes and expectations for you. Besides, they'll be burdened with plenty of their own. We promise to work together, to love and support each other, and to live a life that you would have wanted to be a part of. And we promise to always keep you in our hearts.
Eva, we are sorry, so very sorry. We are sorry that you had to endure this experience for naught. We are sorry if you ever felt discomfort or pain. We are sorry if you ever felt alone or scared. We are sorry that we didn't spend more time with you while you were here. We are sorry that we didn't do more for you; that there was nothing else we could offer you; that we were unable to plan for and solve this. We are sorry that we couldn't save you. And we are sorry that you didn't get to come home with us, but you will today."
"Despite my appreciation of solitude, I have to honor the amazing people we've encountered on this journey. For every newly acquired gray hair on Dave's head, every moment of panic, and every tear shed, there's been someone – friend, relative or stranger – whose humanity was a source of light in an otherwise very dark landscape. I think we entered this time in our journey somewhat jaded and misanthropic, but we can't emerge from this chapter that way. From the people at the hospital who were patient and enduring of us, to Dave's work community who have been generous and understanding beyond any reasonable person's expectations, to our neighbors, who've been cooking meals for us since Eva's passing... we've seen goodness in people that we never expected. Just looking around this room, at the number of people who crossed state lines to be here, at the people for whom taking care of us is part of their job, for all the sacrifices... we can't adequately express our gratitude. We offer thanks to you for coming to share this with us and with Eva. For being there for us in more ways than we can count. For reminding us that faith in people is justified, that you will always get back more love than you yourself can give and finally, that we are not alone in all of this. It is a wonder and a blessing that we have been uplifted by this outpouring of care at the same that we've felt our deepest pain.