Monday, April 30, 2007

Beauty in a Godless Universe

With a title like this, a post should be much, much longer than this one will be. All I have to share is this. I do not believe in God. Certainly not the traditional sense. I can agree in some sort of principle to the Universe, but not a sentient intelligence designing some degree of order in a concerted manner. We could call the organizing principle and underlying order Nature or something like that and I could buy in. In any case, as an atheist, there are few things that I know to exist and that I can't justify with a rational explanation. I could try to explain romantic love in a rational fashion, but having experienced it, I know that little about it makes any rational sense. Sure, sure. Love helps to stabilize the family unit and all. But resource scarcity or proto-culture values could fuel the rational self-interest behind it. So, do we really need romantic love, or other degrees of love, to make things work for our species? No, I think love is something that we can't really explain in scientific terms and so I can't make much sense of it. There is no true reason for it, but it exists. The same goes for beauty, I think.

Beauty is an amazingly subjective thing. We can find things beautiful and there does seem to be some reason for it. We find a person to be beautiful and we can likely agree that the reason behind this is basically sexual attraction leading to procreation, if we are so lucky as to get a chance to have sex with the person we find beautiful. In any case, there is an obvious reason. But what about other kinds of beauty? What about the natural beauty of the Appalachians when the leaves turn? Why would we have the capacity to recognize this in the first place? And, why would we find so much beauty in song and music? More specifically, why would we have evolved to have the capacity to not only hear the beauty in music, but to be able to add our voices together and harmonize to create such beauty? I am listening to a song by a group of South African children. The song is nothing but their voices, backed up by some adults. No instruments. I have no idea what they are saying, but the song gives me freaking goosebumps all the same. I can't explain this in rational terms, certainly not in a manner that can point to some evolutionary value for the ability to enjoy this music or to have a skin response to it.

So, I don't bother to try. I am just enjoying the music instead and accepting the fact that there is something more to life than cold rationalism.

The Heartbreak of a Cardiac Surgeon

I guess it shouldn't, but it bothers me that our cardiac surgeon hasn't said a word since Eva died. He basically disappeared the morning at the hospital and we never heard from him again. We have gotten a card from the doctors in the PICU. Beth, the hospital liasion, came to the service. But nothing from Dr. Shen, a man who actually had his hands on our daughter's heart.

I don't get it. How can he not reach out and contact us? Doesn't he care? Hasn't he been through this kind of thing before? I feel like I've been dumped or something. I want to go back to the hospital and confront him about all this. I want to know why we haven't heard from him. I want him to tell me what happened and if we could have done anything differently. He always seemed to be the guy in charge to us; the person who really knew what was going on and had some degree of control. Now he has just walked away and forgotten us. Maybe he has to do that to deal with the fact that he probably sees kids die on a regular basis. This is the same guy who told me he was worrying about Eva so much that he couldn't sleep.

I just want closure with him. Maybe I want a hug too.

Wednesday, April 25, 2007

Words from Elliot Smith

I'm never gonna know you now, but I'm gonna love you anyhow.

A Short Fuse

So, I have always had a temper. At times, I blow my stack with little warning and over silly things. But, I am beginning to think that I may have a sensitive mood trigger, what you might refer to as the "short fuse". It isn't just anger that seems to come over me rapidly these days. I find myself overcome with grief over Eva's death at moments and there is not always much warning. It just bursts out and then its gone.

Monday, April 23, 2007


Some mornings, I wake up and think that things will be brighter that day. I feel like the burden isn't there and that I'm not still standing in darkness. But, like my shadow, Eva's death never leaves me. All it seems to take is a slight shift in the light and there it is, right in front of my eyes again.

On days when I try to avoid it, it'll get me at the end. Mourning Eva has become the latest thing on my list of stuff that I must do each day and it happens whether I like it or not, like hunger or exhaustion.

Friday, April 20, 2007


I don't feel suicidal, but today is one of those days when I wouldn't get out of the way if a building was about to fall on me.

Thursday, April 19, 2007

Stuff I Never Thought Before

This is a list of things that were in my head at some point since Eva's death:

1. Wishing I was dead instead of her.
2. Wanting to punch myself in the face. For real and not from frustration.
3. That medicating away pain and emotion seems like a decent option.
4. That I'd like to kill Randy, a nurse in the NICU. Or the anesthesiologist that was in the OR for Eva's first surgery.
5. That it isn't a big deal if I stop eating.
6. Maybe if I stop eating, I can simply disappear.
7. Wanting to drive my car into a telephone pole.
8. That I'm not depressed, even though I have no idea what real depression feels like.
9. Like I can't cry.
10. Fear that I will never feel okay again.

Finding Some Meaning

I don't expect to ever find a good reason for Eva to have died. She was a child. Nay, she was a premature infant with a correctable congenital heart defect. And, she likely died not from the heart defect at all, but as a result of the after effects of surgery. So, there was no reason for her to die, but it happened all the same.

Life is fleeting. Really, we all know it. We take it for granted, of course, making long term plans and acting as if we'll be around. We put off, we delay, we bargain, we make excuses, we give ourselves second chances and breaks, we daydream. We do all sorts of things, all the time, that are based on the assumption that we will live long lives. I am not suggesting that I think I won't. But, we make decisions based on this sense of duration that we might not make if we thought we only had a short period of time.

Eva's death forces me to think about my perspective on time. Audrey and I have plans and talk about the future, but how much sense is there in delaying and putting things off, within reason? I am not considering upending everything. Certainly, even in the short term, things like a 30 year mortgage mostly make sense. But, if there are things that I want to achieve in my life, how much time can I really waste in trying to make them happen? More simply, what the hell am I waiting for? As my mother might invitation?

Some things that I want to achieve take effort and hard work and, regardless of whether I die today or live a long time, I can't change that. But, it is better to die while actively approaching those things that to pass away having never taken a step towards any of these things. And, what am I really talking about here? Making my work mean more, really. I have a tech job with a nice salary and great benefits. But, a decade from now, none of that work will have made a single bit of difference in anyone's life outside of what I've done with my income. How much more time can I spend doing this when my effort could be put to literally creating a better world in some fashion? When I say literally, I mean as opposed to the figurative sense of making the world a better place. Or maybe the better comparison is that of passive vs. active betterment. So, passive might be considering yourself a progressive and following along with recycling laws in your community. Active might be joining the Peace Corps and spending every day building clean water systems in Africa.

I want to be more active. It is hard sometimes to not think that all this life has given me is the death of a daughter, not that my lifestyle has anything to do with it. Maybe it is some karmic thing. Sometimes it feels like Eva's life had to be sacrificed for some reason, maybe to just enable us to continue to live comfortably in the suburbs like we do now. Maybe her death hurts so bad that I don't want to be comfortable anymore (I do sometimes want to punch myself, actually). Suffering seems fitting, even if in some small way. And, is it really suffering if we simply give up most of our possessions and do a lot of sweating in the equatorial heat? Isn't there something more that I can give this world than two kids and a few tons of carbon emissions?


There are lots of emotions and thoughts that one has when their child has died. Okay, I can't speak for anyone else here. I have had a lot of thoughts and the range of emotion that I've felt is fairly wide. One of the things I keep coming back to is the guilt that I feel for how we've handled her death.

There is some guilt related to choices I made while she was alive. Spending a bit less time with her so I could go home and sleep, for example. Or, letting my time get used up by talking with doctors and nurses instead of simply talking to her and letting her know I was with her. But, most of my guilt comes from how we've reacted to her death. The grief is there, inside both Audrey and I. But, life doesn't seem to allow for us to just focus on it or to wallow in it. So, we mostly put it aside so that we can handle the things that need to be taken care of each day. There are still two other children in our family that need our love and attention and they easily distract us from thoughts of Eva. But, when I hold Naomi, I often feel guilty that I am not holding Eva. It brings me a great deal of happiness and comfort to be with Naomi, but it makes me feel guilty for allowing myself to feel good with her as if I am somehow taking something away from Eva's memory. I wish she was here and that I could give her what I am able to give to Naomi, but I don't have any way of making that happen. Nevertheless, the fact that I cannot be even-handed in what I give my children kills me. I love them equally and each needs different things from me, but I can't give Eva anything now other than moments of sadness and reflection.

I feel guilty that I am home and getting back to a normal life and she is dead and has no life at all, normal or otherwise. I feel I should be paying some great price for this or that I should be tearing my world apart in grief. But, I'm not. I'm laughing and joking around. I'm actively obsessed with fantasy baseball. I am enjoying pieces of homemade carrot cake. I'm back at work, typing emails and making phone calls and doing all the things I used to do when I was able to make it to the office every day. I am grateful that the whole situation with the pregnancy and Eva's heart has finally come to a conclusion, but I feel horrible for getting any satisfaction out of that. I would never have chosen for things to end this way and I wish I could go back and change it, but I can't help feeling relieved that it is basically over and that we can move on. Am I dishonoring her in feeling like this?

Tuesday, April 17, 2007

Eva's Eulogy, 3/15/07


"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.

Thank you."

Saturday, April 07, 2007

Eva's Last Day

Part of the shock of Eva's death is due to the fact that she seemed to be getting better every day. The hospital staff was fond of telling us how sick she was, even going so far as to tell us that she was the sickest kid in the PICU and maybe even the sickest person in the whole hospital. But, we always believed she'd be coming home with us. And, each day we visited her, there was some good news about her recovery and her progress.

Tuesday had been her best day since the second surgery. Her oxygen saturation was good, her heart rate was good, and her blood pressure was up and getting stronger. Her blood gases were fine too. The dialysis was making progress and it looked like her swelling was actually getting better and she had finally begun to pee. She had made a tiny bit of urine up to this point, but she had begun a consistent flow which meant that her kidneys were working again. Heck, she even opened her eyes while I was reading to her, something she hadn't been able to do since prior to her surgery.

So, when I left her that evening, I was in a great mood and felt really positive about how she was doing. I even left a bit early that night, thinking that she was in good shape and that it would do me some good to get some rest. We assumed we'd be coming to the hospital a lot for the next several weeks, so getting a good night's rest once in a while would be important. Before I left, the pediatric intensivist on call, Dr. Stotz, came by and talked to me about a general concern regarding her swelling. Her fluid retention was asymmetric, meaning that she was more swollen on top than on bottom. The concern was that this could be due to a blood clot, so they had planned to do an ultrasound to look for it and they could treat it if they found something. He also said they were going to use a clot buster to try and clear one of the lines she had going into her. The line wasn't working and they wanted to try and get it working instead of having to run a new line into her. I asked a few questions about the clot issue and the clotbuster, but they assured me that they could deal with the clots and that there wasn't any risk from the clotbuster.

I called the PICU at midnight just to check in on Eva. I really just wanted to know if they had found evidence of clots and if the clotbuster had cleared the line for them. Eva's nurse, Lisette, didn't know the results of ultrasound, but she said they were getting ready to give her tPA, which is the clotbusting medicine. There was no concern in Lisette's voice and I didn't feel worried about any of this at all. I had seen Dr. Shen earlier in the day and he said that he didn't think Eva had a clot issue at all. So, I went to bed with no fears or worries.

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 when 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 sped through the hospital and up to her room, finding a number of people around her working. Dr. Shen was there as was a resident and Dr. Stotz and a whole pile of nurses, some of whom seemed to be doing absolutely nothing. Watching people just stand around while your child is dying makes you want to punch those people in the face. I wanted to scream at them, but I held it in. Everything at the hospital is a bit of a blur for me. They told us that they had done an x-ray and that there was air in her chest, making it hard for her lungs to expand. Since her lungs couldn't expand, she wasn't getting the oxygen she needed and wasn't getting rid of the carbon dioxide. Actually, they didn't even say that at first. They assured us that her brain was okay and that she was getting enough oxygen, but I can look back on those moments and know that this wasn't true. Her brain was starving by the time we got there and it only got worse. The next thing we were told was that they were trying to get her heart to keep beating; that they could get it to start, but that the issue with her lungs meant that it wouldn't keep a steady rhythm on it's own.

I couldn't stand being in the room, staring at her numbers and not being able to do anything. So, I started to pace the floor, making sure to swing by her room over and over. At one point, I made eye contact with Dr. Shen, but his face registered nothing at all. I had wanted to see some glimmer of hope or some expression that would let me know that we would be okay. But, he had nothing for me. I kept walking away from the room, turning around, and wishing that I would hear good news as I approached the room again. I stardd at the monitors in the hallway, watching her numbers jump all over the place, and kept trying to will them to stabilize. Audrey was still in the room, several feet back from Eva, pacing as well. I headed back into the room to be with her and we continued to watch the situation unfold. I kept hearing people say things about her blood gases, about giving her more bicarb (helps balance the pH of the blood), about EPI (heart medication to strengthen the heartbeat), and all sorts of other things. I was trying hard to make sense out of what I was hearing and seeing, but I couldn't because it was happening quickly and I just didn't know what they were talking about.

I began to get the distinct feeling that this was a lost cause. I couldn't see it on anyone's face, but it just seemed like it was too late. I started to feel like all we were doing was torturing her, shoving more crap into her and pounding on her chest to try and keep her alive. And, I didn't trust that she was okay any longer, that she would have a chance at a normal life even if she survived this ordeal. We had to have been close to 45 minutes worth of effort at this point. That is far too long for the brain to go with limited oxygen, although I still wanted her to make it at the time and didn't care about the potential for retardation or handicap.

Then, I saw it. I watched Dr. Shen as he told them to stop. There was no conviction or confidence in what he said or how he said it, as if he didn't want to admit that it was over or have to be the one with the responsibility for calling off the effort. He said it to Dr. Stotz, who didn't disagree with him. The resident kept trying though, keeping her alive in some sense, as Dr. Shen came over to me. He fumbled through his words a bit, getting out something like "We've done all we can and I don't think I can save her...". I waited a moment and then I asked him, "Are we done?" and he said "I think so. Yes."

I think Audrey had already gone up to Eva's bedside. I caught up to her. They were still attempting resuscitation, but it looked like she was getting beaten up. Blood was coming out of her nose. I don't know if they stopped first or if we leaned in first. All I know is that Audrey got in close to tell her that we love her. I'm not exactly sure what happened in the minutes after that. Audrey began to cry. I became overwhelmed with rage and wanted desperately to destroy the machinery and equipment in the room. Dr. Shen disappeared; we haven't seen or heard from him since, actually. I think Dr. Stotz said something to us, but I don't really know. Lisette may have said something as well, but I'm not sure about that either. I did shout out "Can we please get this crap off of her?" in reference to all the tubes and wiring. They unplugged her, pulled up a glider for Audrey, wrapped Eva in a receiving blanket, and handed her to Audrey. Audrey just held her, crying and rocking her. I grabbed a chair and slammed it on the floor, severely spraining my back in the process. I punched the chair a few times for good measure and then collapsed into a glider right next to Audrey.

Eva's chest was never closed, so as Audrey held her, Eva's blood got on her shirt. While Audrey held her, crying while she told her how much she loved her, I seethed and cried and seethed some more. I still can't believe that this has happened, but it was frightening real during the minutes afterward. We sat side-by-side, with Audrey holding Eva, for a long time. I held her too. She was heavier than I expected. She was starting to get cold, but she didn't seem quite dead yet. It was like I was holding a sleeping child, but one who was very motionless. I told her how sorry I was and how much I love her. I held her close to my face, closer than she and I had ever been while she was alive. We only got to hold her in the NICU a few times and never again after she moved to the PICU. Holding her like we've held our other children only happened after she passed away.

After a while, Audrey let Lisette now that we were ready to clean Eva up. Lisette brought a washcloth, some blankets, a water basin, and a memory bag. The memory bag is something the hospital provides to the family of the deceased child. Lisette removed the rest of the stuff attached to Eva and used some warm water to clean her off. We then took the Play-do in the memory bag and made impressions of her hands and feet. We also made prints of her hands and feet using some purple ink. At first, I didn't want to do any of those things, but I realized that this would be the last experience I'd be sharing with her. Making prints of her hands and feet, washing the last bits of stuff from her face, and cleaning the ink off of her became very important moments to me. We cut a few locks of her hair as well. Dr. Stotz came by and told us what he knew about why she died, which wasn't much. He said we could choose to have an autopsy done and we could ask it to be limited to certain areas. We just needed to call some time later that morning with our decision.

We spent some time just cradling her on the bed. I laid my head down next to hers and put my arm over her, cuddling her like would if she had come home. It took a long time, but we said goodbye to her and headed home. I kept trying to get myself to stop crying, but I couldn't hold it together for long periods of time. We are doing better now, but only because we have two other kids that need us to not fall apart.



Your absence has gone through me
Like thread through a needle.
Everything I do is stitched with its color.
- W. S. Merwin

Eva left us at 1:30AM on April 4th. We were there with her and we got to hold her. We kissed her and told her we would always love her and be proud of her. She was 29 days old.

We truly never believed we'd have to share this kind of update, but we will slowly move to a place of peace. We have much to be grateful for. We have two wonderful children and we count you amongst our blessings.

Wednesday, April 04, 2007

Not Out of the Woods Yet

Eva was scheduled to have surgery on her heart on Friday, March 23rd. We found out no sooner the day before, of course, the confirmed date and time. Nevertheless, the cardiac team and the neonatologists were very positive and upbeat about surgery -- and so were we! Eva's breathing had been rapid for several days prior, a sign that her lungs were starting to get stressed by her heart condition, and we were greatly looking forward to surgery so we could put that behind us. The fact that the surgery was going to be a less complex repair than originally expected gave us a sense of relief and confidence that we would soon be putting this difficult chapter to rest. And, it didn't look like she'd even need to be put on heart-lung bypass, sidestepping some additional risks that we had hoped to avoid.

On Friday, as Audrey was driving to the hospital at 6AM. to accompany Eva to the OR, she was involved in a minor fender bender. No big deal, outside of the crazy woman driving the other car. But, the hour it took to get back on the road meant that she didn't make it to the hospital in time to accompany Eva on her way to surgery. Around 9:30AM, as I was making my way to the hospital after dropping Noah off at daycare, we were paged by someone on Dr. Shen's staff. The news was devastating to us. Eva had gone into cardiac arrest on the operating table as her chest was being opened. All they had done up to that point was give her anesthesia, basically. The repair had not begun and would not happen that day. The team could not get her heart started quickly, so they did CPR until she was put on a heart lung bypass machine. She was eventually moved to the PICU where she would remain in order to allow her heart to rest, in the hope that she would regain cardiac function over the coming days. Audrey and I spent most of the day in a private room, barely able to comprehend what had happened and trying to come to grips with the situation. That evening, while I was at her bedside, Eva arrested again, although the staff was able to stabilize her soon after. We were prepared for the worst.

Eva's heart did regain function slowly. Despite having a smaller left ventricle, Eva's right ventricle was actually the one that seemed weaker and showed no activity at first. That was just one of the things that confounded us and the doctors. The bigger issue, however, was that the team could not get her bleeding to stop. She was on bypass, but the blood volume of the machine is much greater than that of a child Eva's age. So, the anticlotting medicine they use to keep the machine from malfunctioning overwhelmed Eva's own clotting factor. Basically, she couldn't outclot the machine, meaning she continued to bleed every day. And, the continued transfusions that she had to get were slowly causing inflammation to her body, meaning she was begin to swell and retain fluid. So, on Tuesday afternoon we found out that Eva's repair would take place as the first case on Wednesday. Dr. Shen 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 to her aorta finally happen. If none of this makes any sense, well... I'm no heart surgeon. Let's just say that the circumstances were sub-optimal and we were warned that Wednesday would be a very big day for Eva. If she survived surgery, she'd have a chance at a good recovery. But it was a big IF and we were again prepared by the staff for the worst.

We called my parents to tell them the news and they flew up that night to be with us for Wednesday. We asked our friend, Sheila, to take Noah to school in the morning. I drove this time. We approached the second surgery differently because the height of the stakes were much more apparent to us. As we anticipated surgery the first time, we just assumed that Eva would make it and that we would move on as a family. We were not going to be so cavalier the second time around. And, given how things played out with the first surgery, we saw Wednesday as a second chance to get this right. Audrey and I went to the hospital together. We got there at 6:15AM and accompanied Eva to the OR, giving her a pep talk and some kisses before the doctors took her into the room. We sat around (or in Audrey's case, paced) and waited. We felt pretty peaceful, but the wait was hard to endure.

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 the heart lung machine. About an hour later, we got another update. Her heart was going strong and she was off the heart lung machine, but her left lung was collapsed and full of thick mucus, which kept her body from being properly oxygenated. Dr. Shen described it as a big "goober" that was getting in the way. Her lung was suctioned by a pulmonologist, which improved her oxygenation, but she was put on an oscillating ventilator and moved back to the PICU.

As a side effect of the surgery, she experienced something known as "third spacing". For a number of reasons, the trauma she has had to deal with has caused her body to react by leaking fluid into the spaces between her cells. This means she has swollen up like a balloon. This is not abnormal for cardiac patients and the PICU staff is doing everything they can to manage her fluid situation. She is taking a number of drugs to help her heart work better, to manage any pain she has, and to help her out in a number of other ways. She is also on temporary dialysis now. She hasn't started to pee on her own yet (well, there has been a bit of a trickle), but it is normal for kids under this kind of stress to not have normal kidney function for 5-7 days or more.

The good news is that she is --while critical-- slowly improving. Her heart has proved to be resilient. Her heart rate is strong and her blood pressure seems to get better each day. Her lungs are in good shape now and her oxygenation is often at 100%, allowing the staff to slowly dial down the settings on her ventilator. She moves, but is so swollen that she can't even open her eyes. And, while she might have something to say, all the tubes in her throat keep her from making a sound. She still has an open chest, but Dr. Shen can close that as soon as the swelling goes down and the dialysis is no longer needed. And, they have just put back her feeding tube and started giving her a bit of breast milk again.

Eva has a long road ahead of her. We wish that her recovery could be quick and dramatic, but apparently this is going to be a much longer chapter than we first thought. We are frequently reminded by her doctors and nurses that she is the sickest patient in the PICU (if not the whole hospital), that she's not out of the woods, that there is something else to worry about, that she still requires a lot of help, etc. But, one of the doctors told us he'd never seen so small a baby be so tough. It's that quality that we know is there and that we believe will pull her through. We'll bring her home and Audrey will have to eat crow and buy a minivan. We have absolute faith in Eva's recovery. She deserves nothing less.