Conversations :: "What caused the heart defect was ..."

Losing a child makes for some potentially strained and awkward social interactions, especially when you’re meeting people for the first time. I thought I would spend some time this week talking about what some of those conversations have been and how we’ve chosen to handle them. These posts are intended to be descriptive (my explanation of what we have chosen to say or not say in these conversations) rather than prescriptive (this isn’t me saying: “this is how you do it”). I simply want to share what these conversations are, what has worked for me, and hopefully spark some discussion around what has worked for you if you’ve been a part of conversations like these as well.

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Deep. Breath. Okay.

Before I explain what this conversation is, I have to admit up front that this one gets me to feeling like an angry tiger backed into a corner, or a boxer whose elbows are being pinned back against her will to the corner of the ring in order keep her from pummeling her opponent to death. This one makes me just plain angry, and I have little to no patience or understanding for those who feel compelled to say what they do in this regard. If it had happened just once, I probably wouldn't mention it. But it's happened at least four times now.

I'm talking about those "experts" who claim to know what caused Ewan's heart defect. The doctor who read our initial 20-week ultrasound blamed it on me not taking folic acid -- before he even thought to ask if I had been taking it before and during my pregnancy. He was shocked when I said I had been taking it, and well in advance of becoming pregnant. Someone else told me it could have been exposure to a particular processed food. Another claimed it could have been the anti-anxiety medication I took for a few months over ten years ago when I was in college. And a chiropractic physician (not the one I'm seeing now) said it was my poor spinal alignment at the time, causing poor nervous system health.

September 21, 2010 :: Ewan hangs on while he gets an echo

I hope I'm not completely off my rocker in reasoning that it's not a huge leap between 1) Someone saying to me that doing X (or not doing X) may cause congenital heart defects, and since your child was born with a heart defect, you must have done (or not done) X, and 2) Feeling accused of having caused it. These things are said by persons with little to no knowledge of my actual habits or medical history, and it has always been the case that they have no way of knowing the particulars of Ewan's case. These conversations took place primarily during my pregnancy, but also have occurred since Ewan's death.

I don't think it's a stretch to say that I have been blamed for causing my son's heart defect.

It is almost universally the case that I am too shocked at the not-so-subtle implication being made about me and my behavior to say anything in response at all. Just like anything else, I try to presume the best intentions of the person with whom I'm speaking (e.g., perhaps telling me this is meant to give me knowledge that may help me prevent a heart defect in my next pregnancy, their intent is not to accuse, etc.), but it's honestly difficult to assume the best of intentions from someone who appears to be assuming negligence on my part. Presumptions are made about what I have and have not done, and based on these presumptions, the would-be expert has the answer for how to prevent it "next time."

Next time? Why are we talking about "next time" when I'm more concerned about the child who is in my belly right now? And we already know he has a heart defect, so of what particular use is that information now?

What's ironic about these assumptions is that we actually do know from Ewan's doctors, surgeons, and a genetic counselor what caused Ewan's heart defect based on the tests that they ran. Statistically speaking, there is no known cause most of the time, but in our case, we were able to find out. If you don't remember me mentioning it, it's because I haven't -- too much was going on when we found out (the day he came out of surgery), and too much has happened since. It wasn't anything I could have prevented, even years in advance of becoming pregnant. It was not a medication, it was not a toxic exposure, it was not anything my diet, it was not a vitamin deficiency, it was not my spinal alignment, nor was it anything else we did or did not do. In other words, we had absolutely zero control over Ewan having a heart defect. That is we know for sure.

I know only too well how completely aggravating it is to have no control over this. I took the best possible care of myself, and my son still got a heart defect and died. So why this need to find an underlying reason for the random and inexplicable -- to identify a cause and relegate responsibility? Nothing on earth could have stopped this from happening. It was like winning the lottery everyone wants to lose.

I could respond with as much information to those who assign me with the responsibility of the defect. But knowing I'm talking to someone who is presuming upon my ignorance and/or negligence does not exactly induce me to be explicit with them. There is nothing I need to defend.

I don't know what else to say except, "We know with certainty that's not what it was," as firmly and as clearly as I can, and leave it at that (hands clasped calmly behind my back and not squeezed around any throats).

This one I don't have figured out to my satisfaction. It feels as though my hands are tied. I do not want to allow someone else's posture toward me to place me in a defensive position. But in not saying or doing anything more, it almost feels like I'm letting someone get away with something criminal. It is exasperating.

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Conversation time!

Fellow parents, I'm looking to you. I'm guessing I'm not alone in this. Have you had an experience similar to any of these? What did you say or do? It doesn't have to be a heart defect -- any health issue your child faced where someone else said you were responsible for having caused it somehow. In retrospect, is there anything you wish you had said or done differently at the time?

Lace up your gloves and let the discussion begin on the Team Ewan page on Facebook.

Nobody Thought We Could Do It {A Photo Reflection}

Our first trial off of ECMO was a terrific and resounding failure. I stood outside Ewan's room that day while doctors crowded inside to see how he handled it when his body had to oxygenate and circulate blood on its own. I nervously clutched with sweaty, white-knuckled hands a small stuffed giraffe my grandparents had gifted Ewan and watched with increasing stress as the monitors showed his blood pressure, heart rate, and oxygen levels plummet.

How far are they going to let this go!? I wondered frantically.

September 27, 2010

I had somewhat of an education on ECMO prior to our admission into the hospital, but learned a lot more once I was there. I knew it was a delicate balance between allowing the body to rest and removing the body's dependency as soon as possible. ECMO proves to be lifesaving for a lot of people, but like any extraordinary life-saving measure, it has its risks. Because the plastic tubing that goes from the ECMO unit and into the patient's body is made of plastic, the patient has to be on a blood-thinner to prevent the blood from clotting. The nurses who ran the ECMO unit were always checking the cells and tubing with a little flashlight for clots that might end up in his body. While ECMO can circulate blood through the body, it doesn't mimic the rhythmic pulsations of the human heart. The organs continue to receive blood, but more in a steady stream rather than with the natural lub-dub of the human body. This can, we were told, lead to organ failure.

So the name of the game is getting off of ECMO as soon as possible.

Between the first trial off and the second trial off, Ewan was sent back to the catheter lab where they used a small balloon to stretch his small pulmonary arteries. Other heart families know how you "pray for pee" when you're in the hospital, and he was making a lot. His body was more dried out the second time around. He was in the best possible position to do well. But I was still nervous.

They performed an echo on the heart while the ECMO unit was shut off during the second trial off. The doctor who reviewed it came out and giddily told me that it looked much better than he ever imagined. Ewan's stats were incredible:  his oxygen levels stayed in an acceptable and -- given the size of his pulmonary arteries -- incredible level of mid-70s to upper 80s. His heart rate and blood pressure remained steady and subjectively, he showed no distress. They had given him a bolus of morphine prior to shutting down the ECMO unit, and Ewan remained wide awake and looking around at everyone as if to say, What's the big deal?! 

James cracked a joke: Chuck Norris called. He wants his baby back.

September 30, 2010 :: ECMO Free!

After more than an hour off of ECMO, he was holding steady. So the decision was made to take Ewan off of ECMO. And there was much rejoicing. I was so proud of him. Nobody expect him to do this well. Nobody expected the little boy with the smallest pulmonary arteries they dared operate on to come off of ECMO looking as good as he did. Nobody expected the little warrior who barely made it out of emergency surgery to make it this far.

So the surgeon came and removed the ECMO canulas and tubing (the ECMO unit is sewn into the open chest, so removing it is a surgical procedure). And then we got to see him again. He was sleeping, but still looking good. Next step, close the chest. Next step, ween down on O2 and get sats that are good on room air. Next step, ween off meds. This day a success, I mentally prepared the checklist of coming hurdles. For the first time in days, I really believed that I would have Ewan in my arms again soon, and that even if it was weeks or months down the road, we would get to bring him home.

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In preparation for Ewan's first birthday, I've been reviewing some of the photos we have of his time with us that have never been processed and have never been seen by anyone else. These are some of those photos. I will share one or two more as his birthday approaches, and have something special planned to share with you for the day itself.

Trauma {A Photo Reflection}

The bliss of his fourth day was short lived. Later that night after we were asleep, the oxygen levels in his blood had desaturated to a point where they needed to intubate him again. Because of the swelling in his windpipe and because Ewan fought the intubation so fiercely, it took five attempts to intubate him and several hours with some very patient and tender NICU nurses before he had calmed down enough to rest.

So on his fifth day, he was unconscious again and his nurse made sure we knew not to try to wake him. No stroking, just gentle pressure on his back, she instructed us. The lights in his room were dimmed, the curtains drawn, and the room deliberately hushed.

September 23, 2010 (5 Days Old)

At the end of that fourth day, we had met with a doctor to go over the details of a procedure Ewan was scheduled for on the following day: the cath (short for catheter) lab. The doctor who would be performing the procedure spent a good hour or so with us going over the basics of Ewan's condition and the wide range of possibilities for what they might find. The purpose of the cath lab procedure was to build an accurate road map of Ewan's heart. With this road map, pediatric cardiologists and surgeons would meet together and create a plan for surgery. The doctor acquainted us with the risks of the procedure, which were minuscule -- the chances of anything going terribly wrong were somewhere around one percent or less.

But we were on the wrong side of the statistics once more. Things did go terribly wrong. 

We had seen Ewan off for the cath lab procedure around three o'clock in the afternoon. We were told to expect a page when it was done. Exhausted, we had gone up to our tiny bedroom for NICU parents and took a nap together on the twin bed. When we met with the doctors downstairs at around 5 pm, we were told: Petermann family -- you're about to get a lot of attention. It didn't sound good. Something had happened in the cath lab and Ewan's oxygen levels had deteriorated to around thirty percent. Emergency surgery was the only option. The only chance for his life was to go in without a plan. It was a rush acquainting us with the risks of surgery and signing the necessary consent forms. They quoted a 30% chance of death. I started sobbing hysterically.

And so began the longest night of my life.

It was a night of much waiting, of updates from long-faced surgeons who kept coming back with the news that what they were trying wasn't working; that Ewan had the smallest pulmonary arteries they dared operate on; that they were taking some extreme measures to make the surgery a success; that if their third option for placing the shunt didn't work, there was no other choice but to close him up and say our goodbyes.

We braced ourselves for the worst, and I requested a chaplain.

But the morning came and at about 3 o'clock, we learned they had made the third option work. Ewan's heart was too weak to come off of bypass, so he was coming out on ECMO (a machine that oxygenates blood and circulates it through the body). But he was still with us.

Once they had him settled in a little before 4 am, we got to go see him.

September 24, 2010 (6 Days Old)

I had seen pictures of babies just after open heart surgery, so I knew what to expect. I wasn't shocked. I had even seen pictures of the plastic tubing of the ECMO circuit sewn into the open chest, so that didn't surprise me either.

But that doesn't mean it wasn't traumatic. Going from birth to this in six days was too much. It was hard to think about what had been done to him -- of the trauma his body had suffered in those hours between 5 pm and 3 am. Understanding that these measures were absolutely necessary to save his life didn't necessarily make it any easier to accept that his chest had been cracked open, that knives and needles had been slicing and sewing inside him. That the surgeons, at a great disadvantage for having no plan, had to move quickly with the skills and the tools at their disposal to try and save his life. I was glad I had taken my time right after his birth to keep my hand on his unbroken chest so I could remember that feeling in the days to come.

Seeing him in that moment, I was mostly elated -- just so thankful that Ewan was still with us after a long night that had us mentally and emotionally preparing for his death. Thankful that even if it was a small one, he still had chance. Later that day, we went to the hospital chapel together, fell on our knees, and thanked God for the life of our son. When the drama of that long night had faded in the coming day or two, I was still elated and thankful, but also quietly seething with jealousy for all the parents I knew who didn't have to face this with their children. I wanted to go back to a place of blissful ignorance and inexperience where heart defects and children's hospitals were concerned, and to know what it was like simply to have a baby and bring him home.

I had become acquainted with a dark and insidious side of life I had no care to know, and there was no unknowing it. In that moment, I lost something I would never get back.

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In preparation for Ewan's first birthday, I've been reviewing some of the photos we have of his time with us that have never been processed and have never been seen by anyone else. This is one of those photos. I will share more as his birthday approaches, and have something special planned to share with you for the day itself.

Hello, Love. Goodbye, Fear. {A Photo Reflection}

Just two nights before, I couldn't sleep. I was so afraid -- for us, for him. Of what he would suffer, and what we could lose. It was one of those nights when I fell to a crumpled heap on the floor. I was tired of trying to be strong. I sobbed, screamed until my throat was raw, and pounded my fists. I didn't care if I woke the neighbors or not.

It was just two nights before this. This was a very different kind of night.

September 18, 2010

In that moment, there was no time to be afraid. In that moment, I learned something of what it means for love to cast out fear. My love may not have been perfect, but it was all I had, and he had all of it. Without hesitation and without reservation, I loved him. In a way, I couldn't help it.

He was so vulnerable, so broken. He was not the perfectly healthy baby a parent hopes for. But he was mine, and that was enough. I saw that he was strong, and that he was fierce. I saw how much he needed our love, and how ready he was to receive it. All I wanted in that moment was him: to protect him, to fight for him, to tear down walls for him.

Loving him was (and is) worth it: every sleepless night, every tear, every moment I thought the grief would take me, too. Ewan may be gone, but the love is still here.

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In preparation for Ewan's first birthday, I've been reviewing some of the photos we have of his time with us that have never been processed and have never been seen by anyone else. This is one of those photos. I will share a few more as his birthday approaches, and have something special planned to share with you for the day itself.

I can't help but think that Ewan had something to do with it.

Those of you who know me personally or who have been reading here for long know that I'm not given to being sentimental. I have feelings of course (plenty of them), and am not afraid of expressing them (I think we all know that), but I'm not the kind of person who is given to adding personal significance to a lot of the things I see around me, or to talking about sad or even normal things as if they are sweet. My preference tends to be for the literal -- give me the truth, straight up, no chaser.

But you also know if you've been reading here that there have been some things I've seen and heard that I've just known were meant for me. Like the rainbow on the day of Ewan's funeral. Like the dream I had before our most recent ultrasound of rocking a sleepy baby in my grandmother's rocking chair. These things -- I am certain -- were meant for me, to point me to hope, a way for God to let me know He sees me, knows my heart, and knows exactly what I need.

I do believe that Ewan can see us from heaven, and that as one of the glorified body of Christ, that he can intercede and pray for us. And I believe that Austen Brielle is an answer to his prayers on our behalf. A gift such as this just smacks of him. Allow me to explain ...

I found out about this pregnancy the week of Mother's Day. It was Ewan's way of saying: Happy Mother's Day, mom. I love you.

Austen's estimated due date is January 11, the same week as my birthday and not-so-incidentally, the same due date my mom had when she was pregnant with me. It was Ewan's way of saying: Happy birthday, mom. I love you.

We just learned and continue to rejoice in the news that the child in my womb is perfectly healthy. We were witnesses to Ewan's suffering, and he to ours (as he continues to be). It is Ewan's way of saying: I don't want you to hurt in the same way ever again. I want you to have your family together at home. I love you, mom and dad.

We learned that our baby is not only healthy, but a girl. It is no great secret that James especially has long dreamed of having daughters. I don't think I could possibly love my son more (and honestly, I would have been thrilled at the news we were having another boy), but my heart rejoiced at the news of a little girl as well -- getting to use the name I've been saving since college, getting to dress her in cute little things, and the possibility of realizing more dreams than I can count. It is Ewan's way of saying: I want you to have all you've dreamed of in a family. I love you, mom and dad.

I just know he was behind all of it -- it was God's to grant, but I believe Ewan asked for every single thing. In his sixteen days with us, he was exceedingly generous with himself in the way he loved us, received love from us, and sought connection and intimacy with us in what ways he and we could. He suffered and fought desperately with a body that failed him in order to try and stay. And in the end, he couldn't. Our hearts break daily for that reality, and concurrently rejoice in the reality that now he's in a position to love us even better.

So ... thank you, Ewan -- from the bottom of my broken, full, and rejoicing heart. I miss you and love you forever, my beautiful boy.

I want to give you something.

When we first found out about Ewan's congenital heart defect, we felt incredibly alone. I had never known anyone personally who had found out that something was so grimly wrong with the child they were expecting, and the news made me feel isolated and frankly, like an oddball. They were taking blood and running tests and shoving informational pieces of paper in our hands before I even had the chance to absorb the words "heart defect." It was all so surreal. It was a nightmare.

One of the things that helped do away with the feelings of isolation was networking in online communities and finding other families who either had gone through or were going through the same thing.

That's how I found out about baby Bowen and his heart.

Many of you probably already know about Bowen Hammitt, who was born 9 days before Ewan on September 9, 2010 with Hypoplastic Left Heart Syndrome (HLHS). Like we were with Ewan, Bowen was diagnosed with his heart defect prenatally. Bowen's dad Matt is the lead singer of the band Sanctus Real and like us, he and his wife wrote a lot in the time between the diagnosis and Bowen's birth. We blogged (as did the Hammitt family), and Bowen's dad also wrote songs about their journey during that time. Though initially written for his family, those songs are about to be released on an album called "Every Falling Tear."

I only needed to hear a line or two of "All of Me" before my own tears started to fall. It spoke so much to what we experienced in my pregnancy with Ewan, and after his birth and death. It spoke to our resolution to love him fully no matter how broken he might be. It doesn't have to be a heart defect, but any parent who, ecstatic to see their baby for the first time at an ultrasound, has heard the dreaded words "there's something wrong with your baby," will resonate with the lyrics of the music. They are not only heartfelt, but speak to a deep kind of knowing that we all hope to avoid: being afraid to love for fear of what you could lose, of how you might completely fall apart. This music speaks of a commitment to love fully in spite of the risk -- even if all that love is not enough -- because that little one is worth every falling tear.

I couldn't agree more. (Please pass the tissue now.)


"All of Me" from Ryan Lynch on Vimeo.

And that's just from one of the songs. It's incredibly meaningful to me when I find words -- whether in an essay, a poem, or song lyrics -- that speak to me in a way that resonates deeply and has me saying: there is someone who gets it, who found the words I couldn't find. It only took hearing a few lines of "All of Me" to be convinced that not only does the man writing these songs "get it," but that he dared to risk his heart on something that could break, and found it was worth it.

I can't wait to hear more.

If you're interested in hearing more too, Matt's label has offered me the opportunity to give away a copy of the album to three Team Ewan readers. All I need you to do is to leave a comment in this post if you're interested, and you will automatically be entered (only one entry per person, please). I'll be taking entries until 9 pm Sunday (August 28) EST and will select three random entries to be the winners that I will announce here on the blog on Monday, August 29. The copies of the album will be available the first or second week of September.

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If you're interested in getting your own copy of the album, "Every Falling Tear" hits shelves on September 13. To read more about Matt and the story behind the album, this article is a good one. To read more about Bowen and how he's doing now, you can read the family's blog, Bowen's Heart.

One Year

It was a year ago today that we learned about Ewan's broken heart.

May 19, 2010: First glimpse of Ewan, just before we heard the news

We didn't speak of it until afterward, but we each had an eerie feeling going into it that something would be wrong -- something that would challenge our convictions, something that would necessitate us rising to the cause of fighting for his life.

When the doctor came in to see us after the ultrasound tech had completed her checklist, his congratulations was sober. He told us about Ewan's heart, postulated as to the possible diagnosis, and offered an amniocentesis to see if there were any chromosomal or genetic anomalies. James remained clear-headed, but mine was whirling. I felt like I had gotten struck by a bus. They wanted to take my blood, test my DNA. He recommended taking folic acid with my next pregnancy (which I told him I had been taking regularly well in advance of my pregnancy), and I wondered why he said that when I was in the middle of this one.

He mentioned abortion over and over which, upon learning of the heart defect, I expected to hear at least once. My husband spoke for both of us when he said that would not be an option. He was clear, not the least bit ambiguous. He spoke with certainty and conviction. The doctor proposed a panel of tests that would tell us more and help us make our decision. We affirmed again clearly and in no uncertain terms we weren't going to seek to end the life of the beautiful boy they had just shown to us. For us, it simply was not an option.

And then he crossed the line.

How long have you been married?

We were just four days away from our first anniversary. He said that we were young in our marriage and still had a lot to learn about each other. He said this would put a terrible strain on our relationship. He said our relationship might not survive this.

I couldn't believe what I was hearing.

I was still stunned from the initial news, but my instinct was to jump off the table and cut the stream of words coming from his mouth. He was a medical doctor, not a psychologist or anyone we even knew or trusted. We could not have known then what would face us, but he did not know us. He did not know that Ewan had a name, and that it was not "fetus."

We left nearly three hours later. By then, most everyone who had been anticipating our news with us had the unshakable feeling that something was wrong. Our phone calls that night shared the news that we were having a boy, and then came the news about his heart. We wept with every single phone call, and I stayed home from work the next day.

I wept all the next day, too. And I had felt him move and squirm before, but that first morning after, he kicked hard and repeatedly, reminding me he was still here. He was alive and well, and he was strong.

On being proud

I'm really proud of Ewan.

Our home and my desk at work is plastered with pictures of him. Sometimes I get so caught up in looking, that I will reach out a finger and touch the picture, trying to remember the feel of his skin or hair. I will close my eyes and try to breathe in his sweet new baby scent again. I look at him, and I'm so terribly proud of him. I look at him, and I almost can't believe he came from James and me.

He didn't need to do anything to make me think this way of him. He didn't even need to be perfect -- he just needed to be. This realization has turned my heart inside out.

And the more stories I hear about how Ewan himself has wound its way around those hearts who least suspected it, the more I hear about prayers answered through his intercession, the more my heart swells with pride for the one I call my son. My son, my Ewan. I say it out loud sometimes just to affirm my relationship to him. I can hardly believe this one came out of my body.

I'm so very proud of him.

On being open again

You bet we want more.

Call us crazy, but we are still all for having a family. When I had my six-week checkup with my OB in November, she asked us what our plans were. She said that people who go through a loss like this may want time to process, while others want to launch straight back into babymaking. We were somewhere in between, wanting time for me to recover and heal physically, and also time to deal with things emotionally while not also contending with a torrent of hormone-induced vomiting episodes. But we also need to balance this with the reality that we're contending with the calendar: statistically, there may not be a lot of fertile years left.

It has been both good and necessary to take some time to grieve and not to worry about when we want to add to our family, but we are kidding ourselves if we think that this is a process that will ever reach some kind of finality, that we will ever wake up one morning and say, "Hey, I think we're done being sad about Ewan's death now. Let's start having some more children."

So as we approached nearer to the point where Ewan would have been six months old, in my mind, we were "trying." It only took two months of this to realize the "trying" mentality was an incredibly bad idea for me emotionally and psychologically. With "trying," a negative pregnancy test feels not just like a failure, but also a lot like loss for the child that "could have been". Honestly, I was obsessed. Tears and anger ensued when discovering that month's negative results. I could see and feel that this mentality was unhealthy, but I was so caught up with "trying" and felt like I couldn't let go of it even though I saw how it was harming me.

But I have let go of it. It was surprisingly easy once I recognized it for what it was. I've let go of "trying" and am embracing "being open" instead. This attitude of being open is how we found ourselves expecting Ewan, after all. I'm not going to cease in my efforts to ensure that my body is an optimally healthy environment for a baby, but I'm releasing the death-grip I had on the effort to achieve pregnancy within a certain timeframe. I'm going to enjoy the fact that I get to share life with an amazing husband and invite that love to bring more children our way.

Ewan taught me so much, and continues to teach me. Though unlikely, it is possible that what happened to Ewan could happen to another child of ours. We decided early on, however, that we weren't going to make our decisions from a place of fear, but rather from hope: hope that we could have a "normal" experience, hope that next time, we will have a child at home -- except after Ewan, normal wouldn't be normal at all. Normal would be extraordinary. Because of Ewan, to say I can appreciate that now is a terrible understatement.

When that day comes, there will be a lot of wondering, and a lot of waiting. Breath will be held until we can see and know (in as far as we can know) that that little beating heart is whole. And when that day comes, it will be worth it no matter what happens. For me, Ewan is proof enough of that.

Wondering Out Loud

"They tell me H. is happy now, they tell me she is at peace. What makes them so sure of this? ... why are they so sure that all anguish ends with death? More than half the Christian world, and millions in the East, believe otherwise. How do they know she is 'at rest?' Why should the separation (if nothing else) which so agonizes the lover who is left behind be painless to the lover who departs?"

C. S. Lewis, A Grief Observed

I've been wondering lately if he misses us. I was happy to read this passage in C. S. Lewis again and find that I wasn't the first grieving person to wonder this. I find myself asking if, even for the total absence of pain and brokenness in heaven (and the presence of God to boot), there is something of a sense of separation -- not imperfection, but like a marriage that has not been consummated yet. The vows have been spoken, the marriage declared, but it isn't complete until husband and wife come together as one flesh.

I haven't been wondering this because I want him to be anything but perfectly happy -- after all he went through in his barely sixteen days on earth, he deserves all the happiness he can get. But something about him skipping about in heaven without nary a care or a tear for where he came from and those left behind doesn't seem like quite the right picture either. It's hard to imagine what heaven might be like with an earthly mind and any wondering about I could put into words about heaven and separation wouldn't do it justice.

I'm not suggesting that heaven is anything other than a perfect place. I just wonder if there is some kind of sense there of what there is here, that sense of tension that tells us things are not as they should be. At least not yet.


A few notes:

James and I are heading out of town! We're leaving on a jet plane early tomorrow (1/20) to spend a week in Nashville and then a week in the Orlando area. We're going to spend time with some good friends and make the acquaintance of some new ones. I haven't been an every-day kind of blogger lately anyway, but I just wanted to let everyone know that if I'm even a little less present over the next couple of weeks, that is why. We get back on the evening of February 3, and then I will head back to work full time on February 10.

For Christmas gifts this year, I made a small book for family and friends that had selections from blog posts I had written throughout my pregnancy and Ewan's life (and after), as well as some of our favorite photos from the same period of time. I know that though many of you never got to meet him, you loved Ewan too. So if you would like one, the book is now available for you to order through Blurb.com. We aren't making any kind of money from this -- we just wanted to make it available to those who would like a memento of Ewan's life.

sixteen days: the life of ewan eliezer by Kirsten Petermann | Make Your Own Book

And for those of you wondering, I am working on writing a book about all of this. I just have part of an introduction and a rough outline so far, but I'm plugging away at it. I continue to maintain that Ewan is too good not to share, and I'm hopeful that his broken heart will continue to heal others for years to come.

Now I guess I had better get packing!

Learn to Carry

Nighttime can be the hardest sometimes. A day can be filled with activity: working out, meeting up with people, e-mailing, doing laundry, cleaning the bathroom, getting things done. But when night falls and everything slows down, it's more difficult to shove off the sadness that's been lurking just over my shoulder all day, waiting for me to slow down enough so that it can wrap itself all around me, bind my limbs and squeeze my heart until it feels as though it will burst. It's missing Ewan, and it's all the other things right now that aren't turning out the way we had hoped. It's all those things that make the idea of giving up so tempting.

It's those things that make for dreadful nights, and mornings after like this one.

And it hits me, what I've said before and am living now: I can never really "get over" this. It's always going to hurt. I'm always going to miss him. It will probably be the case that most nights as I turn over in bed to turn out the light and catch a glimpse of our 4-day-old looking up at James and holding on to my index finger that my chest will cave in a little and my eyes prick with tears. I don't expect there to be a day in my life where I wake up and don't feel some sadness when, in the midst of all those new-morning mercies, I realize again that I have been widowed in my motherhood.

I remember going to see our chiropractor for the first time after Ewan died. Dr. Doug had been praying for us and for Ewan, and we dreaded giving him the news. His eyes filled with tears when he entered the room and told us about the 3-month-old daughter he and his wife buried over twenty years ago. Before that day, we had no idea.

It will never stop hurting, at least not altogether. But I can learn to carry it: to walk and breathe with it, to sleep with it, to wake up to it, and to get through each day with it, even though there might be a lot of days where it feels like having a sack of bricks tied around my neck and both ankles. I'm learning how to do it, and will keep on learning.

Presence & Comfort

I have some pretty amazing friends -- some of whom I've never ever met before.

Hugging a friend at Ewan's funeral

Many of you reading here also know Jill. You may be here because she pointed you my way, or maybe it's the other way around. In any case, she's coming to Seattle on Wednesday morning to visit for a few days. We connected somehow over Twitter several months ago when, both of us pregnant (she about five weeks ahead of me), we were seeking to connect with other heart families. We were prenatally diagnosed (her baby Joshua with HLHS, and my baby Ewan with TOF and Pulmonary Atresia) about a month apart, our boys born about a month apart, and died just two days apart. We shared so much of this journey together, each of us having the chance to hold up the other.

And now we're taking advantage of the opportunity to connect in person. I think I can say for us both that we really don't want other people to share in common with us the thing that brought us together. But I think I can also say that we are incredibly thankful that each of us found the other: that if we had to walk this path, we did not have to walk it alone. It is so good to have someone else who can truly say: I get it.

I am also grateful to have other friends who can come and sit with me during this time. Christianne will come to visit for a few days in early November, and Sarah and Terri will follow shortly after. There is no agenda, and there are no set plans. These women are simply offering themselves and their hearts to me, to sit with me, cry with me, laugh with me, listen to me, and remember Ewan with me. I cannot think of a more generous offering.

I know it's not an easy thing to do, to sit with someone who is grieving. Grief makes for an unpredictable and rocky terrain with sharp peaks, deep valleys, and unexpected turns. Having people alongside for the journey may not change the severity of the terrain, but not having to navigate it alone makes a world of difference to the one who must walk it. I hope that someday, I can offer to someone else what these women offer me -- the chance simply to listen and be present, be available. Not to offer words where none will do.

To all of these women, thank you. To those who come and read here, thank you. To those who leave comments and send me e-mails and offer suggestions of ways Ewan's legacy can be passed on, I thank you. You all offer presence and comfort. You all remind me that I don't do this alone.

Looking Ahead

I've been thinking about this space a lot and wondering what its future might be. It's been helpful for me to use this space as I process and move through the grief of losing Ewan, to connect with other mothers (whether they have been through anything like this or not), and to continue to share this beautiful baby boy with the world.

When I first set up the blog, I had three very specific ideas in mind: 1) To get as many people praying for Ewan as possible, 2) Connect with other mothers/families who had been through similar experiences, and 3) To share information about congenital heart defects, the most common type of birth defect that so many people have never heard of before.

Maybe some of you have been wondering along with me: What now?

Team Ewan has turned into something more than I ever envisioned: a place for me to process through grief, share how I see God leading me on this path, and what I continue to learn from Ewan along the way. The connections that I have made with so many of you who visit here have transformed me. I certainly have my own ideas for the future for this space, but just like our journey with Ewan, I've learned that sometimes my ideas are too small. I've learned that what I want might not be the best thing -- or in fact what I really want at all. Over the course of the last month or so, I've seen this site turn into something way better than I ever could have imagined.

And so I'm holding the question open and am going to keep my eyes open to see if and how the answer presents itself. I'm not going to force it or press it or rush it -- I think the answer will be obvious when it comes.

So, Ewan ... what should we do now?

Paradigm Shifting

It might be difficult to admit, but it's true. If Ewan were born healthy and whole, if I had sailed through my pregnancy over smooth waters and under sunny skies, I can tell you what the tenor of my dialogue might be right now.

4 days old

I'm so tired! My nipples are sore. Ugh, that was the nastiest diaper. And did I tell you about how it got everywhere when I was out running errands? I can't get even three minutes to myself anymore ... and the spit-up got everywhere!

Even if it were not my intention, I would quite likely be taking my healthy child for granted, making the minor complaints that I've commonly heard from those with a newborn. I probably wouldn't have stopped to take notice of each kick and movement like I did when I was pregnant, and probably would have been lamenting my sore hips a whole lot more.

But when you get news like we did, it cannot help but change the eyes through which you view not only your experience, but everything around it. Suddenly, everything I had been so worried about before seemed impossibly small. I could not even remember what many of those things were.

Before Ewan was even conceived, it was most definitely the case that he was wanted and deeply loved. We made every possible preparation we could to ensure a healthy pregnancy and a healthy baby. And what we learned was that what happened with Ewan's heart was entirely out of our control -- and I mean entirely, determined by the two cells that came together to make a new little person. There was not a single thing we did to cause it, nor anything we could have done to prevent it or make it better.

This is comforting. 

There is nothing we did to cause this, it didn't happen because of something harmful or wrong that we did.

This is aggravating.

There is nothing we could have done to prevent or change this, and nothing we can do to ensure it doesn't happen again. 

This is completely humbling.

We really have no control over any of it.

These are painful lessons, and it kills me that it takes something like this to get me to pay attention and to stop fretting over whatever those piddly little nothings were that were so terribly irksome before. When I looked into those blue eyes of his, I saw wisdom and beauty and love and everything that matters in life, telling me

This is now. Soak it in. Don't miss it, not a single breath or heartbeat.

Those eyes will be teaching me for the rest of my life. I don't want to miss it: not a single breath or heartbeat.

I've heard it said ...

This is one of those posts where, depending on what you believe yourself, everything I write is going to seem so upside-down and backwards. Sometimes I take a step back from the faith I claim as true and acknowledge why, from a certain vantage point, things like what I'm about to say may seem nuts.

If you've been reading here for any length of time, you have a decent idea of who I am and what I believe. I'm not shy about expressing it, or being honest about those things that turn me inside-out with fury. A child has died -- this is impossible to reconcile with anyone's idea of how things "should" be. When it is my child, it is particularly tricky to contend with so many of the claims that are made at times like this -- any line of reasoning is wholly inadequate when dealing with this mountain of grief.

I, like so many other people I know, hoped for a healthy pregnancy and a healthy child (honestly, does anyone hope for anything else with a pregnancy?). I didn't want any drama or special attention. I didn't want there to be any need for a "Team Ewan."

But even when I was pregnant with Ewan -- even after we found out about his broken heart, there was a phrase that kept popping into my mind. So many faithful Christians use it, but I don't think I've ever heard it said in response to the loss of a child.

God is good.

Typically, this is what is said when there is a job promotion. When the cancer is gone. When a healthy child is born without any complications. When the sun is shining, when we got the new house, when we are propping our feet up in the eighty-degree sunshine with an iced tea in our hand. When the kids are doing well, when our bank accounts are full, and when the world is kind to us.

If there is one thing I know now for sure, it is that a dead child doesn't allow for a fluffy theology.

The things Ewan taught me will be unfolding for the rest of my life, and this is a big one. If we believe God is good only when we have a reason to smile at what life brings us, then we haven't embraced the gospel fully enough. The Christian faith is one of carrying the cross, of rejoicing in the midst of suffering. It's not a message of prosperity, where the "good news" is that Jesus will give you whatever you want if you pray the right prayer, have enough faith, and assent to a particular list of bullet points. If that's the message, then Jesus was certainly the most miserable failure when it came to living out the message that he preached.

It begs to be said again that yes, we grieve. Yes, I am and will be angry that Ewan is not here. Yes, I get furious that when so many people around us are having perfectly healthy children, we didn't get that. Yes, I cry and kick and scream until I'm so physically exhausted that I cannot cry or kick or scream anymore. I've said before and will say again that having faith in God and having hope that this is not the end does not cancel out the grief and anger we experience. That is simply not realistic.

But it also begs to be said:

My Ewan was diagnosed in utero with a severe heart defect. God is good.

He nearly didn't make it out of open heart surgery at five days old. God is good.

At 16 days old, his kidneys, liver, and intestines were failing and he suffered from a serious blood infection. God is good.

My infant -- my only child -- died in my arms. And yes, even if I say it through gritted teeth at times, God is good.

I don't claim to be able to explain how or why any of this happened -- and it's not as if the fact that it happened makes me happy. Far from it. It is not something anyone can be trite about, and it is not something that can be easily dismissed or explained. I adamantly reject any easy "bumper sticker" types of responses to our grief, our loss, or to why Ewan suffered as greatly as he did. It is not fair. It is not how it is supposed to be. I am the last one you will find claiming otherwise.

But I do know that God is good -- and that even out of horrible things, He makes good things happen. I also know that I don't know everything. I can acknowledge that because of Ewan's story, all sorts of good things may be happening that I will never find out about. And no -- no amount of good things happening because of him is the same as having him here. And even if we should be so fortunate as to have other children who are born healthy, it isn't as though any of those children could replace him. Even now, we feel keenly that our family is missing Ewan.

So whether I say it through a smile, through my tears, or somewhere unintelligible in the cacophony of kicking and crying and screaming, I say to you: God is good.

A Holy Moment

Our dear friend Mary was at the baby shower that was held exactly a week before Ewan was born. A gifted photographer, she offered to be there for any important moments we wanted documented. We hoped and prayed that we wouldn't be calling on her for a night like this one.

When we knew we had to say goodbye to Ewan, I knew I wanted her there. When I called her, she did not hesitate in coming. As difficult as we knew it would be to view the images of that night again -- as much pain as we knew they would recall -- we knew they would be invaluable to us, their significance surpassing words. Aside from her skill as a photographer, we knew she would be the one who would love us and our child, and to treat these last hours with Ewan with surpassing love, dignity, and compassion.

Click to view larger image

This photo just slays me. I don't know how else to say it. I see the love we have for our son. I see your love there, too. I see our grief in letting him go, and our simultaneous acceptance of it. I see someone so innocent and not meant for this earth resting peacefully in our arms -- and looking at him, I wonder if just maybe he was too good for this place. I wonder if like his namesake Eliezer, he would say, Do not delay me. The LORD has made my mission successful. Now let me go back to my Master. I see the cross. I see the Trinity. I see the Blessed Mother. I see the dream and the nightmare holding hands, the darkness and the light bleeding together.

But the light is always more powerful than the darkness. No matter how dark the night, even the smallest pinprick of light pierces through. I really can't take any credit for Ewan, or for the light he shed. I'm certain that he gave me enough mystery to unravel for the rest of my life, even should that be another fifty or sixty years.

Sweet baby, you never really belonged to me. My understanding of what this means barely scratches the surface of the truth. Until my dying breath, I will miss you and weep for the loss of you, but thank God in every tear that I was the one called your mother.

The Things I Never Knew Before

You're making a brave choice, and for what it's worth -- I think, the right one.

The doctor who had been handling Ewan's case came into the room in his street clothes after the nurses had informed him of our decision to stop support and say goodbye to our son in peace. He put his arms around us, said he was sorry.

It was precisely this moment I dreaded when I was pregnant -- the one that, as I imagined it, made my blood pressure rise. I knew I couldn't handle it. I knew for sure I didn't have it in me.

But I was given so much grace for that moment. Whether you share my beliefs or not, you have to know it wasn''t my own strength that got me through it. I wasn't numb to any of it, and I wasn't in shock. I was given the grace to be fully present, both in my aching grief and in my acceptance of it. One day, I will write at more length about that night. Everything about it was sacred. Everything about it was so, so holy. It was not my strength. It was most definitely not my courage.

I had never watched anyone die before -- never been present for when one person passed from this life to the next. I had never witnessed the mystery. I never expected that it would be with my son.

Michelangelo's Pieta

It was only this morning that I remembered Michelangelo's Pieta statue: a marble carving of Blessed Virgin Mary cradling the body of her dead son. Though our circumstances were so different, I did that too, and it made me feel such a kinship with her. I know she was holding me as I held my dying son. And I know her Son was there with us, too.

Other things I now know:

I know what it is now to plan a funeral for a baby, to be asked to bring his clothes and pictures of him to the funeral home.

I know what it is to feel utterly powerless, to trust cardiologists, surgeons, and nurses with the life of my son. I know what it is to consent to them taking a knife to his body to crack open his chest. I know what it is not to be able to help him.

I know what it is to come home to a basket of folded laundry: his clothes, diapers, and tiny socks.

I know what it is to hear the most skilled doctors and surgeons say: there is nothing more we can do.

I know what it is to stare at the empty crib, and the closet full of baby clothes that he will never wear. I know what it is to weep bitterly.

I know what it is to have my breasts ache with milk for a baby who can no longer be fed. 

I know what it is to wonder why the sun dare shine, why the earth dare continue to spin, and why people dare go on smiling.

I know what it is to receive cards of congratulations and of deepest sympathy at the same time.

I know what it is to explain to kind strangers who witnessed my pregnancy that our baby is no longer with us.

I know what it is not to be afraid of what people might say. I have endured an entirely unmedicated childbirth with back labor, and I have held that dying baby in my arms just two weeks later. There isn't much that can rattle me now. I may be vulnerable and I may be grieving, but I still remember what the truth is.

I know what it is to welcome life into this world, and I know what it is to walk through the Valley of the Shadow of death at the next turn, and not to fear it. I know the grace that carries a person through that.

I never knew these things before. I never wanted to know them. I wish no one else had to know them. My imagining these things ahead of time doesn't even come close to the reality that is now, and that is to come.

To all the mothers and fathers who have walked this path before us: I honor you. I honor your bravery and your courage, and the grief you hold in your hearts. Ewan will always cause me to remember you and the children who were likewise taken from your arms.

* * * * *

Please grieve with me the fresh loss of another heart warrior. Jill and Shane have just lost their sweet baby Joshua who fought so hard for so long. Blessings and peace be upon them. Jill, I love you and my broken heart is with you. I only wish my arms could stretch far enough, that we could lean upon one another and weep together.

Holding the Tension

The poor baby just couldn't catch a break.

Everything that could have gone wrong, did. Every time we heard "this hardly ever happens", "this is what we see in very extreme cases", and "it's very unlikely", that was Ewan. Even the statistics that were less than 1% seemed to apply to him. To us. If there was a minuscule chance of something going wrong, it did. If there was a small chance of him not having something he needed, he didn't have it.

One important thing to realize about Tetralogy of Fallot is that there is a wide range of severity, and a broad spectrum of anomalies that can go with it. The analogy that I came up with and that our doctor agreed with was this: saying "Tetralogy of Fallot" is like saying "I'm bleeding." It could be a paper cut, or it could be a gunshot wound. Ewan had the gunshot wound kind of Tetralogy of Fallot. He had pulmonary atresia on top of it, the smallest pulmonary arteries they ever dared operate on, and no identifiable PDA (a blood vessel that is open in the heart in utero, and normally closes a few days after birth). If he had had a PDA, he might have stood a chance.

In other words, one case of Tetralogy is definitely not like the other. In other words, Ewan had a heart that was not meant to sustain his life.

Even as I am able to say honestly things like I did in my post yesterday about hope and seeing God's hand in all of this, I hold this in tension with it an unspeakably deep grief. Anger, too. Anything can precipitate a cascade of tears and sobs. Nothing at all can give rise to the same, and then there I am, on the floor wishing that I could cry even harder, cry hard enough to feel like the crying mattered.

After I got out of bed this morning, I saw the little stuffed monkey the nurses had given him to cuddle with post-operatively. He always had one arm tightly around it and was noticeably irritated whenever they moved it or took it from him as they assessed him. I lost it.

I miss him so much. I want my baby back. This isn't fair. My baby. My sweet, sweet baby!

These are the words that run off my lips in those moments, over and over and over. This is what I tell God. I will never get to hold him again. I will never feel the softness of that baby skin or the silkiness of his hair. I'm already starting to lose the sweet smell of him. Everything cries out: it shouldn't be this way.

The only moments I saw him without tubes and tape all over him were at his birth and at his death. I never got to see him without slathering my hands in Purell. Save for the moment he left my body and was placed on my chest, I never saw him without the permission of his nurses.

And now I grieve things like the fact he never got to be outside a hospital setting: I will never get to watch him sleep in his crib, dress him in the clothes we bought for him, change his diaper, or nurse him. I will never get him back, and he is precisely the one I want. Only him.

I know we are probably going to hear some well-intentioned but hurtful things in the coming days and weeks. Things about having another baby someday, about how happy he must be in heaven, and about how I shouldn't be sad because he no longer suffers. I hope I'm able to communicate in those moments that grieving Ewan (that grieving any loss, really) is not a black and white matter; it's not either/or, but both/and. I can trust that he's in heaven and rejoice in that, and I can acknowledge that we will be feeling the loss of him acutely for a long time -- probably our whole lives. I can rejoice in the truth that he is not suffering anymore, and weep bitterly over the reality that he isn't with us, that we did not get nearly enough time with him. I can be happy that he doesn't have to be sliced or poked or taped or stitched ever again, and desperately ache for him to be back here with us. One reality doesn't cancel out the other. We hold them in tension, with all the uncomfortable complexity and unfathomable mystery that such nuances create.

I miss that sweet baby boy so much. I miss how intently and knowingly he would gaze at me, not just with his eyes but with his soul. I miss his fingers curled around mine. I miss having him under my heart, feeling him roll and stretch and kick. My sweet, fierce little Ewan. You took our hearts with you.

Room to Breathe

It feels like we don't really have any (breathing room, that is). We don't have the luxury of a lot of time, or of waiting until we feel rested and rejuvenated and before we make any big decisions. We do have a lot though: we are well-loved and supported, and we both know we are empowered and graced to make the best decisions for our family even in a time as impossible-feeling as this.

I'm simply astounded by all the messages of love and support we've been getting. I'm getting e-mails from all over the country and the world -- from people who are local and people who live across oceans. From people who have added our family to the prayer chains at their churches and organized prayer groups focused on prayer for our family on a daily basis. I see these messages and I comprehend them, but I just can't take it all in right now -- it can't quite sink in. I'm astounded and humbled at how many people love this child, who are pulling for him, and want the best for him. One day, I know it will hit me. And it will be too much in a good way.

I wish I could get back to you all. In the absence of my ability to do that, please know that I read every single e-mail and every single comment. They are getting to me, to us. I want you to know how much we cherish that, even if we aren't able to express that to you directly.

As we reach a critical point in our decision making for Ewan's care, we will be pulling away a bit from regular updates and social media in general. We will still be receiving messages if you want to send them, but for now our energy needs to be focused on the needs of our little boy. We just need that little bit of extra room to breathe.

I was so thankful that our priest could come tonight -- to talk with us, to pray with us, and to anoint Ewan. There was something very comforting and heartachingly beautiful about the whole thing. I've always known Ewan belonged to God first and that even in the best of circumstances, the children we bear are never really ours to begin with. What I saw and experienced tonight reminded me of that in a very poignant way that both pierced my heart and comforted it.

It reminded me of this: that even if the number of Ewan's earthly days is shorter than we would like it to be, that's not the end of the story. Not even close.

Nobody really knows what went wrong.

We're back on ECMO for the time being. The victory was short-lived.

Shortly after I finished writing the last post, we went to check on him one more time. He was still looking good, even several hours after being taken off ECMO. Shortly after that, he started desating -- his O2 saturation levels dropping, his heart having to work much, much too hard. It was too much stress on his body.

He's back on ECMO and stable for now. It's nearly 3 am. They told us to get some rest and we'd talk later.

We know we have some tough decisions to make in the next day or two. Barring a miracle, we're faced with the following decision: do we let him go, or do we send him back to the cath lab for a procedure that might rupture his pulmonary arteries?

The team of doctors and surgeons here is amongst the best; I have to say that they've taken good care not only of Ewan, but of us as well. I know they're doing everything in their power. It's just that his case is so much to the extreme. His case is exactly what you hope not to see (as a parent or a doctor). And now we have to be realistic.

It will take a miracle.