Continuity

That little monkey has seen and been through quite a lot with this family.

Click image to view a larger version of the photo.

And Everything After {A Photo Reflection}

Anyone who has grieved someone they love can tell you: grief isn't easy. It's some of the hardest work you will ever do. It is intense, unpredictable, and though it does have its stages, they are hardly linear. You can find yourself traveling back and forth and in between denial and anger and bargaining and acceptance and depression any number of times along the way and sometimes, several times in one day.

It's utterly exhausting. And in many ways, it doesn't make a whole lot of sense.

After a night of many tears :: January 10, 2011

Natural human tendency tends to be to protect ourselves from pain whenever we can. Perhaps if I had held back and loved less, or attempted to convince myself that none of it really ever happened, or that none of it mattered, I could have made it easier on myself. Perhaps, as one anonymous commenter noted two months after Ewan's death, I should "just get over it already." You know, snap out of it. Sweep it under the rug and put it behind me.

Yeah. Because it's just that easy: to have a child, give your heart to him completely, watch him die in your arms, and then skip along through life as though it never happened. As if it were just a bad dream I could shake off. As though denying reality were the way to get on with life. As though my heart weren't every bit as broken as his.

I've struggled to find words for my friends who haven't lost children, and even more for those who don't have children at all to try and describe what it feels like to be pregnant, give birth to a child, and bury him three weeks later. For a long time, I couldn't find anything that would even come close. But in a moment of revelatory contemplation I realized quite clearly that it is a taste of hell. I say this without the least hyperbole or exaggeration. There is nothing like a mother's love for her child. Experiencing separation and loss is exquisite torture. There is nothing like nurturing a life from its very beginning only to watch him suffer and to see his life slip through your fingers in its infancy -- and you with all your protective instincts are utterly powerless to stop it. I became one of the many mothers who had all the attendant instincts and no child to care for, and I can't deny the reality that it is a taste of the agony of hell, pure and simple.

And it feels like it will never, ever end.

But. But ...

January 13, 2011

But life does come again, slowly. It dips a toe inside to see how you adjust to its ripples. It can't be forced. It can feel like a betrayal somehow of the one you lost. But experiencing life again doesn't mean forgetting or betraying, or even that in moving on, you don't also continue to feel your loss acutely. It's not an either/or proposition. I believe that after your heart shatters like that, when the pieces start to be stitched back together again, your heart grows bigger. When it does, you find you have the capacity for both at the same time: loss and life, joy and pain, laughter and tears. You can hold onto the trauma that shattered you and continue to mourn it, and also find that you're grateful for how it has taught you to feel more deeply, to love more fully, to embrace the present moment -- in fact, to live out of love instead out of fear or bitterness or denial.

And that's why I say here on the blog header: (and life again). Because life can come back, and it will. Where Ewan is concerned, I know I'll be nursing a broken heart for the rest of my life. I'm under no illusions about that. I also know that in that time, I'll find a greater capacity for joy and life than I ever dreamed was possible. I know it because I have. Even as I weep for the son I buried, I find absolute delight in his healthy baby sister who is so incredibly vibrant and full of life. In my one heart I hold unspeakable grief and pure, unmitigated joy.

January 30, 2011

And I intend to embrace them both.

* * * * *

This concludes the Photo Reflection series leading up to Ewan's first birthday which is tomorrow (9/18)! Please come back tomorrow morning to share in my tribute to recognize and celebrate Ewan's first birthday. Many thanks to all of your for the faithful ways in which you've cared for Ewan and allowed him into your hearts. Thank you for following our journey and honoring our son with us. I've got the best readers in the world!

Also ... for those of you who might be interested, I'm making another appearance on Catholic radio live today (yikes!!) from 2-4 pm ET to talk about Ewan's life in relation to our faith and spiritual journey. You can find your local station at EWTN.com > Radio > Stations (AM/FM or Sirius Satellite), or you listen live from the website by clicking on the "LISTEN LIVE" link on the right-hand sidebar. If you're not able to tune in today but still want to listen, the show will be archived and available for listening within a day or two of airing. Wish me luck!!

Twenty-Four Inches {A Photo Reflection}

The funeral home asked me to bring with me something for him to wear. Neither of us could stand the thought of buying burial-appropriate baby clothes for our child. In a paper bag, I brought with me a normal little baby outfit I had gotten as a gift at one of my baby showers: a newborn-sized onesie with a smiling monkey stitched on the front, and green and brown striped pants that had a big monkey face on the rear end. I brought socks to match. It was adorable and accomplished our goal: we wanted him to look like a baby -- not a miniature adult.

We sat with the funeral home coordinator and discussed prayer cards and program types and photographs, and I didn't fall apart. We talked about burial options and proofing the death certificate and the best time for the service for all the family members coming from out of town. Then the woman we were working with escorted us to a room in the back to make a choice from a selection of caskets.

That's when I fell apart. I lost it at the sight of these burial boxes in miniature, of white velvety fabric covering twenty-four inches of very classic-looking casket with silver handles. Twenty-four inches made to look pretty that meant something terrible and ugly and wrong had happened. It had me wanting to climb the wood paneling looking for a way out. The first time seeing my baby dressed in anything, and he is laid out in a casket. This had to be a nightmare. Wake up, wake up, wake up! 

This couldn't be real. Please God. Don't let this be real.

We buried him on the day he would have been three weeks old, a day when the sky had the decency to be thick and grey with clouds that were heavy and pregnant with rain. James' dad and mine were the pallbearers, each holding on to one small silver handle to carry Ewan's body into the church and then out again, and then again out of the hearse when we arrived at the cemetery.

We stood under a dark tent together, raindrops gathering like fringe around the edges. The rain thrummed against the thick fabric of the tent as the deacon spoke words of blessing, as he spoke of standing with us through that longest of nights. I stood close to my son, thinking of how much had changed since that day three weeks prior when, like Ewan, my hope was also new and beautiful and alive. I thought of how the list of firsts I anticipated when my belly was full with him was now a list of nevers.

When the words were done, we were quiet for awhile. Someone handed me the crucifix that was resting on his casket. I tucked it inside the pocket of my black wool coat and held on. And then we buried him.

Twenty-four inches and a half-sized plot, a white box lowered into the dirt.

* * * * *

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 have one more photo reflection to share, and then have something special planned to share with you for his birthday on Sunday (9/18).

A Little Bit of As It Should Be {A Photo Reflection}

If you've been here for any length of time, you know what happened next. By the end of the day, we were back on ECMO. A day or two after that, we learned that Ewan had contracted a blood infection. And a day or two after that, everything was going downhill. He hadn't woken up all day. He hadn't moved. Kidneys were failing. Intestines were dying. Liver was giving up. None of his organs were getting the oxygen they needed. There were positive signs of serious and irreversible brain damage.

The most optimistic of Ewan's surgeons, a wizened older man with sparse light-colored hair and a bow tie, was honest with us about Ewan's condition. We don't see kids come back from this.

I could hardly believe we were being faced with these grim realities and the decision they imposed upon us. We didn't want to give up. And we certainly didn't want to let him go. But letting him linger and continue to fail slowly was unthinkable. I couldn't bear the thought of finding out about the death of my child with a grim middle-of-the-night phone call. If he was going to pass, I wanted to be with him when it happened. So we made the decision to have ECMO shut off, to let nature take its course while in the company of those who loved and fought for him -- and if that meant he was going to leave us, to send him off peacefully. 

Photo by Mary Combs :: October 3, 2010

There were a lot of pictures I could have chosen to talk about this night. But this one reminds me of how for the first time in days, I got to be and feel like his mama. All I was doing was wiping his nose (which was bleeding because of the thinners he was on for ECMO), an incredibly "mom" thing to do. Nurses had done everything else for him over the entirety of his hospital stay: changing diapers, taking care of his oral care, keeping him clean, even putting booties on him. For once it was him and his mama and papa, holding him and wiping his nose. I hated the circumstances, but I loved that in his final moments, it was just us. And we got to wipe his nose. It seems like a very small thing perhaps, and certainly not one of the more cherished aspects of parenthood. But for once, the task belonged to his us: his parents.

Ewan's attending physician came that night as we were all gathering together in his room. He told us that he thought our decision was brave. I'm still not sure if that's true. What I do know is that after a litany of circumstances and events we could not and would not have chosen, we finally got to choose something beautiful for our son. In a deep, wide ocean of not-as-it-should-be, we were able to find a little bit of just-as-it-should-be before he went from this life and into the next.

* * * * *

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.

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.

* * * * *

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.

* * * * *

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.

Held {A Photo Reflection}

I can count on one hand the number of times I got to hold him.

The first time was at his birth, and it was just for a minute or two. He needed to be measured and weighed, and started on IVs.

The second time was at Children's Hospital, intubated with a too-big breathing tube and on enough morphine to manage his discomfort and render him unconscious.

The fourth time was when we were saying goodbye and he was already slipping, lingering in that place between alive and dead.

No one had to teach me to reach for him: I already loved him and wanted him, but stretching out my arms for him was visceral and instinctual. I had already held him from the time he was the size of a poppyseed. Holding him close was the most natural thing.

But, as any family having a baby with a heart defect knows, nature must give way to medicine: to prostaglandins and canulas and isolettes (appropriately named), to IVs and yellow paper gowns and hand sanitizer. You know it is what is best, but everything in you rebels. He needs those things, perhaps, but no one needs to teach you that he also needs you: your heart, your skin, your warmth, your arms.

If we had any really good days with Ewan, it was the third time I got to hold him: when he was four days old. His only oxygen support was from a nasal canula, so there was no need for morphine. He was awake, alert, and engaged. There were no major tests or procedures that day. For a little while, he just got to be mine. He rested with me for awhile. There were no plastic walls to lean over -- just a mama's ready and willing arms.

Chronologically, it may have only been an hour and a half. But in that space where minutes stretched into an hour and a little more, I lived an eternity. It may not have happened in the way which we had hoped, but it happened: skin to skin, mother and child. For what could have been a minute or so, the universe slowed down, and nature was righted if only so slightly. No more separation. Instead, heavenly peace.

* * * * *

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.

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.

* * * * *

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.