Will Kenyon

2010-02-07T21:47:00.002-06:00

As we face yet another snowy evening and anticipate six more inches tomorrow, it's hard to believe that in 10 short weeks we'll be strolling through the streets of Iowa City in our fifth March for Babies. Once again we'd like to invite our friends and family to join Team Kenyon in Iowa City on Saturday, April 17, or to find out when your own town is having its walk and lace up your shoes.
We're proud to walk each year in memory of Will and in honor of Edward, Daniel and all the healthy babies in our lives. We and the March of Dimes appreciate whatever support you can offer, whether physical (by walking with us or in your own hometown), financial (by making an online pledge toward our fundraising goal) or moral (by encouraging us to get up and get moving in preparation for the six mile walk.)

Clicking on the Team Kenyon link above will take you to my fundraising page where, if you scroll to the bottom, you'll find links to donate and/or to register to walk with us or in your local event. Each walker has to have his or her own page so John has a separate fundraising page.

2010-01-22T09:23:00.002-06:00

Will, it's hard to believe it has been five years since we lost you. There isn't a day that goes by that we don't think about you, miss you and wonder about what might have been.

2009-12-06T20:56:00.002-06:00

We lit our Will tree tonight, the one that we put up on Will's birthday and take down the day he died. We put ornaments on it each year with the intention of giving them away to people who visit us during the holidays, with the goal of keeping Will's spirit and memory alive through these friends. Will's brothers, Edward and Daniel, helped to put the ornaments on the tree. Then, Edward took our small Will photo album off of the shelf and asked to look through the photos.

As we flipped through, he asked some questions, and told me some things that he knew from previous perusals. When we got to the pages with photos of me holding Will, I realized that it was five years ago to the day, close to the hour, when I held Will for the first time. It was the day after my birthday, and it was the best birthday present I had ever had (or, I would expect, will ever have). It's hard to believe that five years have passed. What a five years it has been. Most important among the changes is that we have Will's beautiful brothers with us. No matter how much has changed, however, one thing remains constant: Our undying love for Will and our resolve to keep him alive in our hearts.

2009-10-26T20:07:00.003-05:00

Questions, questions, questions, but never enough answers.

Tonight Edward helped set Will's tree out, and we all sat together to turn the pages in the small photo album. Daniel learned to answer, "Will!" when we asked who was in the pictures and to call him "brother." I imagine this lesson will bear repeating, but there is something very striking about hearing him call his brother by name.

Edward gave us a bit more to deal with. So many questions we can hardly answer for ourselves, much less to satisfy the constructs of his "black and white" world.

"Why is Will in Heaven?"

Well, because he died honey.

"Why did he die?"

He was very sick.

"Why did he get sick?"

He was so tiny.

"Why was he tiny?"

Beacause he was born before he was ready

"Why was he not ready?"

It wasn't the right time for him to be born. Babies need to stay in mommies' bellies longer.

"Why did he die?"

He was sick and he just couldn't get better.

"What are those tubes?"

Will needed some machines to help him breathe because he was too tiny.

"Did the tubes make him better?"

Well, they helped him for a little while, but he just got too sick.

"Why is Will in Heaven?"

Will is with Jesus in Heaven.

"When will he come back here?"

Well, he doesn't come back. When you go to Heaven you stay there.

"Can I go to Heaven and see him."

No, it doesn't work that way.

"But what if I went and just came back."

Well, you'd be the first (in a long time, we did not add...)

"But I want Will here!" <throws toys at wall in frustration>

So do we, buddy. So do we.
(And sometimes we wish we could vent in just the same way.)

"Why do you have tears, Mommy?"

I'm sad without Will here. And I would be sad if you were not here.

"I'm sad without Will too."

Five years. We cherish your memory but wish you were here. Happy Birthday, Will. Mom, Dad, Edward and Daniel love you and miss you every day.

2009-04-10T19:51:00.002-05:00

Tonight we went to the final Lenten Fish Fry at the Catholic high school. Edward was enjoying his kids meal of cheese pizza and mac&cheese and taking in the new surroundings of the high school cafeteria. "What's that," he asked, pointing high up on the wall. It was a statue of Jesus with his arms outstretched as if blessing all who eat there.

"That's Jesus," I replied.

"Does he live far away in Heaven?" Edward asked

"Yes, buddy. Jesus lives in Heaven with Will."

"Does he get to play with Will?"

"Yes, I think Jesus does play with Will."

"Do they have a dining room?"

This last bit might be a puzzler unless you know that, lacking any dining room furniture, we use our dining room as a play room. It's filled with the kids' toys and that's where we spend most of our play time together.

"Yes," we managed to respond. "I bet there is a dining room in heaven for Will to play in."

2009-01-22T20:51:00.002-06:00

As I sit here tonight about an hour later than I should be, I have to laugh. You see, I've spent the last 45 minutes off and on trying to get Edward to pee. He's gotten better, and most of the time it's not a matter of his potty training falling through as much as it is being distracted or, more often, ornery. This usually frustrates me considerably -- it has happened enough that whenever I let out a deep sigh in such situations, Edward turns to me and says, "frustrated?" -- but tonight I was very patient and tolerant.

The difference? Last night, in anticipation of today, I read through this blog to see what I wrote during Will's final days and hours with us. As frequent followers may recall, he wouldn't pee either, but the consequences were much more dire. His problem was tied in with a whole host of other problems, including poor kidney function, low blood pressure, chylothorax and fluid retention that left him puffy, in pain and with a general lack of energy because he was fighting a vicious virus. When he did pee, we were elated, for we felt it was a turning point, a sign that his unbelievable strength was pushing him through the illness. These feats in the last couple of days never lasted long, and his trips up the rollercoaster were much, much shorter than those on the downward side of the slope.

Early after Will died, I wrote here about his short life giving me perspective. I was more tolerant and forgiving. I wish I could say that was a permanent effect. There are many times I think of Will, particularly when doing something boring or painful or challenging, and think, if my little guy could go through what he did, then I can go through whatever this is with no complaint and my head held high. While Will is never far from my thoughts, too often I need to remind myself of that lesson.

So it was tonight. While Edward sat on the potty doing everything but pee, I thought instead of Will and his every precious drop. I had promised him I would follow him around with a mop and a bucket the rest of his life if he would just pee. Little did I know his brother would make good on his behalf while potty training, leaving me and Mary to follow behind to sop up the occasional mess. Tonight, I know Edward will pee eventually, and reminded myself that it's no big deal. I gave him an extra long hug, did the same for Daniel, and now sit here waiting for him to call me to finally admit that he has to go. I wish I had three boys up there in bed. Instead I have two boys in bed and one in my heart, helping me to do my best with his brothers.

2008-10-26T20:11:00.002-05:00

Edward carefully carried your picture into the living room to put next to your tree tonight, Will. He insisted that we turn the lights on for "Will's tree." Looking at him, it's hard not to think of what "might have been." Three little boys tumbling through the living room? It was not to be. Instead we have two tumblers and one guardian, ever watchful that none of us tumbles too far.

Happy Birthday, Will. Mom, Dad and your brothers love you and miss you every day.

2008-03-19T20:11:00.003-05:00

One month from today, on Saturday, April 19, Team Kenyon will be back on the move for the March of Dimes March for Babies. This is the new name of the event we've participated in for the last three years, raising both awareness and funds for the fight against prematurity, which has touched our family so deeply. Once again we'd like to invite our friends and family to join us in Iowa City or to find out when your own town is having its walk and lace up your shoes.

We're proud to walk each year in memory of Will and in honor of Edward and Daniel. We and the March of Dimes appreciate whatever support you can offer, whether physical (by walking with us or in your own hometown), financial (by making an online pledge toward our fundraising goal) or moral (by encouraging us to get up and get moving in preparation for the 10K walk.) It's been a long, sedentary winter, but we're finally seeing clear sidewalks and sunny afternoons, so we're hoping to be on the move as much as possible.

Clicking on the Team Kenyon link above will take you to my fundraising page where, if you scroll to the bottom, you'll find links to donate and/or to register to walk with us or in your local WalkAmerica event. Each walker has to have his or her own page so John has a separate fundraising page.

2008-01-22T21:02:00.001-06:00

This afternoon I moved Will's picture back to the shelf where we have his keepsakes in preparation for putting the memory tree away. Almost as soon as Edward woke up from his nap, he noticed the change and pointed to Will's picture on the shelf. In just a few short months, Edward has made a place for Will in his life, just as we did three years ago. Some day he'll understand the significance of leaving the tree up until January 22, but for now it's enough that he knows Will is his brother, someone to love and remember every day and in a special way on this one.

2007-12-10T20:55:00.000-06:00

Will's light is shining again in this year's memory tree. Even sweeter is that Edward is learning a bit about this tradition and starting to identify Will as his brother. Soon he'll be the one inviting guests to take an ornament from out tree to hang on theirs, remembering our Will.

2007-10-26T19:30:00.000-05:00

A late-night discussion of baby names last night reminded us that we were doing the same thing three years ago to the day, unexpectedly needing a name right away for the baby we weren't expecting for three and a half more months. William Albert was named for his Grandpa Kenyon and his Great Grandpa Ganey, two great men with strong names to lend a tiny boy making a troubled entrance into the world. He took hold of that strength and made it his own, propelling him through a short but powerful life. Now that we know the power of a name, the choice is that much more difficult as we consider options for Will's next brother or sister. We'll look to Will for inspiration in this as in all that we do.

Happy Birthday, Will. Mom, Dad and Edward love you very much.

2007-07-02T18:34:00.000-05:00

Thanks again to all who supported Team Kenyon in this year's Iowa City WalkAmerica event. We had the ninth highest team total at $2,325. Your love and support is a continuing tribute to Will, extending the impact of his brief time with us. We would trade it all for even one more day with him, but since that's not an option, we believe this is our way to make a difference.

2007-05-13T20:17:00.000-05:00

We started Mother's Day weekend with the third-annual Preeclampsia Foundation Walk-a-thon in Davenport on Saturday morning. This event happens in a number of cities around the country, and our local organizers are the parents of Shelley Bridgewater, who died from HELLP Syndrome a few days before Will died. Her daughter Haley survived despite her premature birth and leads the walk each year (in her wagon.)

This year I was asked to share my story at the beginning of the walk. In the interest of brevity, I usually leave out most of the details of my illness when I talk about Will. This annual event is important to me because it brings together so many women and their families who have suffered the effects of preeclampsia. This is what I said:

Good morning. My name is Mary Kenyon. My husband John and our son Edward are also here with me today. Our son Will is with us as he has been each day of the last two and a half years, in our hearts.

I live in Iowa City and work for the University of Iowa, which means my health care providers are at University of Iowa Hospitals and Clinics. While this may seem an extraneous detail, it’s a key part of my story. I believe this made the difference for me between life and death.

I was 23 weeks pregnant in mid-October 2004 when a sharp and burning pain under my ribcage on the right side woke me in the middle of the night. I’d never had heartburn but associated it with pregnancy, so I thought perhaps my spicy dinner coming back to haunt me. I shuttled between the bedroom and the bathroom that night and finally was comfortable only in an upright position. The next day was Sunday and I thought I was feeling better, but that night the pain returned. I called my doctor’s office the next morning, a Monday and reported my symptoms—sharp pain, vomiting, diarrhea. They asked if I had a headache-No. Blurry vision? No. Excessive swelling? No. In fact, other than these nightly episodes, this was a textbook healthy pregnancy. No morning sickness, no swelling, no problems to speak of.

“Well, it’s probably a stomach virus,” they said. “It’s going around. Lots of our patients have it. Drink plenty of fluid and rest. Call if you don’t feel better.” I stuck to my weak-stomach diet: bananas, rice, applesauce, chicken broth, 7-up, but still spent the rest of the week in that same nocturnal pattern. Each day I called the doctor’s office to report the continuation of my symptoms, but they sounded confident that this was a nasty virus and explained that it takes longer to recover from illness while pregnant because the baby gets first dibs on the available resources. They offered to see me in the office, but the way I was feeling the last thing I wanted was to drag myself there just to be told to go back home to rest.

“If there’s nothing they can do,” I thought, “I’d rather just stay home.”

My regularly scheduled 24-week appointment was the Monday after I’d spent the week home feeling horrible. By the time I got there I was so weak and dehydrated it was difficult to provide the requisite urine sample. The nurse who took my blood pressure tried to remain calm even as her eyes bugged out at the reading and she instructed me to lay down on my side. My doctor came in and explained that the protein and blood pressure indicated danger and that she wanted to order some blood tests before deciding on a course of action. She said I could stay at the hospital to wait for the results or go home and she’d call me later. I couldn’t face another night like those I’d endured the past week so I said I’d rather be at the hospital where they could take care of me. The clinic was closing for the afternoon so they took me to Labor and Delivery where I could lay down and wait for John to come after work.

We were totally unprepared for the doctor’s words when she came with the lab results: You have severe preeclampsia and HELLP Syndrome. We will have to deliver your baby within the next 24 hours. I had heard of preeclampsia but thought the treatment was typically bedrest. I had never heard of HELLP Syndrome. It would be weeks before I fully understood how serious it was and that it might have killed me. In fact, I didn’t really understand until I read the Quad City Times story about Shelley the following February. At that moment I had only one thought, and clutching John's hand with tears streaming down my face, I struggled to voice it: "Is the baby viable yet?" Yes, we were told, but it will not be easy. University Hospitals neonatologists have a 60 to 70 percent success rate with 24-week premies, but still the longer the pregnancy can be prolonged the better. Each day of development in the womb is worth two outside, so even a matter of hours could make a difference for the baby we did not yet know but would soon love with every fiber of our being.

I was given a steroid shot to help his lungs mature and we hoped for enough time for the second shot 24 hours later. They started a magnesium sulfate drip and inserted a catheter. When I was all connected and back in bed, my doctor tried to further explain what was going on. She told us that HELLP stood for hemolysis, elevated liver enzymes and low platelets. She said my body was in a way rejecting the placenta and that the only way to reverse that was to deliver the baby, thus removing the placenta. Normally a jovial and energetic person, she was calm and direct in these discussions. But she did not say, “If we’re not vigilant you could die.” I know she was thinking it though, because later that night when my parents arrived from Chicago that’s what she told them: Your daughter could die. My mother is still haunted by this.

We did make it long enough for that second steroid shot, but not much longer. About 28 hours after I was admitted, our son Will was born by emergency C-section on October 26, 2004. He weighed 1 pound 2 ½ ounces and was 10 ½ inches long. His time in the womb had been cut short by 15 ½ weeks. We heard a single cry before he was intubated and rushed to the Neonatal Intensive Care Unit, where he would fight for his life every day of the next 12 weeks. Because of the magnesium sulfate, I was not allowed out of bed to go see him for 24 hours after my surgery. I counted down the minutes and demanded to be taken to him as soon as the second hand swept past the 12. But I was not out of the woods yet myself. I briefly passed out at Will’s bedside and woke up to a flurry of concern over how to get me out of the NICU and back to bed as quickly as possible.

I was lucky not to have any complications in my own recovery. I was very weak and tired and it took all my strength to make it from the parking lot to Will’s room in the NICU where I would sit and watch him for hours, holding his hand when I could, allowed to help with only the simplest tasks like diaper changing and taking his temperature. It was December before I was able to make it though a whole day without an afternoon nap.

Will faced enormous challenges as a result of his extreme premature birth. He fought through infections, a heart defect and corrective surgery, the constant pounding of the high frequency ventilator shaking his lungs to keep them open. His obvious determination to overcome the odds against him stole the hearts of everyone who came in contact with him, even the briefest encounter. He lived for 12 weeks and four days, but finally faced more than he could bear and died on January 22, 2005. Down the hall, unbeknown to us, little Haley was growing stronger despite having lost her mother just a few days earlier.

As a mother you’re supposed to protect your children and I did all I could at Will’s bedside, all the while knowing that HELLP had robbed me of my ability to provide the most basic shelter from harm: a full gestation. Nothing I did caused it. Nothing the doctors did could have changed it, even if they had recognized it sooner, despite my “atypical” presentation much earlier than in most cases and lacking many of the telltale symptoms.

The symptoms of preeclampsia have been observed for more than 2,000 years since the time of the ancient Greeks. It was defined as a distinct syndrome in the 1920s. It is the leading cause of both premature birth and maternal morbidity and yet there still is no preventive or curative treatment. This is our third year walking for the Preeclampsia Foundation, and we are so grateful to John and Brenda and the rest of the organizers for their commitment to education and awareness of this silent killer. We can’t wait another 2,000 years for the answers.

About four months after Will’s death, we discovered to our great surprise that I was pregnant again. The following months were full of anticipation and anxiety. I gave myself shots of heparin, a blood thinner, twice a day, though there was no way to know if that would avert another onset of symptoms. Starting at 24 weeks I saw my OB every week and when my blood pressure went up at 35 weeks, she did not hesitate a moment in admitting me to the hospital for further tests and monitoring. Edward was born on Christmas Day 2005, five weeks early but strong and healthy, the best present we ever could have received. Sent from heaven, from Will.

2007-04-22T19:55:00.000-05:00

What an amazing day we had yesterday at the Iowa City WalkAmerica. It was gorgeous and sunny with a light breeze to keep us cool as we walked six miles in memory of Will, in honor of Edward and in support of the important work of the March of Dimes. Many of our friends joined us, some with their kids in strollers and a few eagerly awaiting the big day. We are deeply grateful to all who supported us this year, near and far. It looks like Team Kenyon topped the $2,000 mark in fundraising this year, but more than that, we're continuing the important work Will set out for his in his short life.

2007-04-17T20:07:00.000-05:00

Thanks to all our friends, family and faithful blog readers who are supporting us in our work with the March of Dimes to end premature birth, Team Kenyon has raised nearly $1,500 in advance of the Iowa City Walk America event this Saturday. This includes donations John and I have received as well as donations collected by our friends and family who will join us for the walk. We continue to be humbled by Will's lasting impact and will do all we can to honor him all the days of our lives.

2007-03-07T20:25:00.000-06:00

As we prepare for our third March of Dimes WalkAmerica event, Will is on our minds even more than usual. Team Kenyon will be out in force again this year and we invite you to join us in whatever way you can--physically (by walking with us or in your own hometown), financially (by making an online pledge toward our fundraising goal) or morally (by encouraging us to get up and get moving in preparation for the 10K walk.) Clicking on the Team Kenyon link above will take you to my fundraising page where, if you scroll to the bottom, you'll find links to donate and/or to register to walk with us or in your local WalkAmerica event.

This year one of the other local participants has enlisted family teams like ours to contribute pages to a scrapbook that will be displayed at March of Dimes events in our area to show real people affected by prematurity. I am an avowed non-scrapbooker, but once again, Will leads me to things I never thought I'd do. A friend with many creative talents, including scrapbooking, helped me create my pages--one for Will and one for Edward.I am happy to have our boys represented in this project and I trulyenjoyed the chance to spend a whole evening with my friend, who I do not get to see enough, but I definitely have not been converted. The results (when achieved by those whose skills far surpass mine) are lovely, but it's just not for me. I'm doing well if I even order prints of my digital photos, much less file them in the simplest photo album! Instead I have my blogs. They may not look pretty, but they capture the moments in our lives that we most want to share with those we love.

2007-01-22T22:15:00.000-06:00

I was playing with Will's brother, Edward, tonight, and couldn't help but think about what was missing. Two years ago today Mary and I said goodbye to our little guy after three months of always believing that he would rebound, get well and come home with us. As I play with Ed, I always think of Will, wishing that he was here with us, roughhousing, reading books and playing hide and seek. Of course, he is here with us; just in a different way than we imagined. He is in our hearts and in our thoughts, never more so than on anniversaries like this one. We still miss him terribly; not a day goes by that we don't think of Will and our short time with him. As Edward gets older I can't wait to tell him about his strong big brother, to continue spreading the impact that Will made on the world, his spirit kept alive through those he touched.

2006-12-05T16:23:00.000-06:00

This tree is a special new Kenyon family holiday tradition. It's very small, as you can see, and is decorated with tiny star ornaments. This holiday season, we will invite friends and family who visit to take one of these ornaments and remember Will as they hang it on their own tree at home.

Last Christmas, of course, we had our own special memory of Will in the arrival of his brother Edward, who we still think of as Will's gift to us. We look forward to this simple tradition as a powerful and tangible way to include Will in our family holiday celebration.

We got this idea at the NICU memorial service we attended in the fall from a couple who spoke about the tragic loss of their two sons, both victims of the same rare genetic disorder that meant they each lived less than two years. Their story was both heartbreaking and inspiring, as they spoke of their boys as if they'd hardly been gone a day, let alone eight and ten years.

As we move further and further from those 12 weeks of Will's life, we'll have more people in our lives who weren't with us through it all and who don't "know" Will. I still cringe when someone asks how many children we have or if Edward is our only child. The answer to that question is too complicated and too personal for casual conversation with new acquaintances, but how can I answer "One" or "Yes"? It may sound strange, but in a way, the tree can help us with this complex, emotional conundrum. Anyone who is close enough to spend holiday time as a guest in our home should know our whole family.

2006-11-14T09:24:00.000-06:00

Today is Prematurity Awareness Day, part of the larger Prematurity Awareness Month held each November. We'll be at University Hospitals this evening for a candlelight vigil and a special lighting of the gothic tower there that will cast it in pink and blue. It offers another chance for us to connect with others who have faced similar situations and to celebrate the great work they do at UIHC for premature babies.

A video commemorating the month is available to watch here. It is powerful and moving, though a bit difficult to watch as it hits very close to home. Anyone wanting more information about the month can find it at the March of Dimes web site.

It doesn't seem possible that it has been two years since we spent every waking moment at Will's side. At times it feels like it was just yesterday.

2006-10-26T14:14:00.000-05:00

Happy Birthday, Will. It's so hard to believe you would have been two years old today. I wish I could say I remember every minute of your first day of life, but in truth, I was sick, you were sick, we were all so worried, and it's kind of a blur. These two years have raced and plodded-- sometimes, impossibly, at the same time. Now we see all the kids who would have been your friends climbing in the neighborhood park or toddling around the library, even as you remain a tiny baby in our minds and hearts. But your strength and spirit endure, propelling us through each day without you. We love you and we miss you always.

2006-09-25T10:27:00.000-05:00

There isn't a day that goes by that we don't miss Will, and there are still, nearly two years after his birth, so many triggers that bring him to mind. Just now, listening to my iPod while doing some busy work here at the office, U2's "Vertigo" came on. It's the first time I've heard the song in its entirety since Will died, and as readers of this blog know, that song is as intertwined with my thoughts about Will as anything. (I have about 8,500 songs on the iPod, so on random play, it can take months to ever hear the same song twice).

It was fortuitous timing, I suppose, as we thought a lot about Will this weekend. We attended a memorial service at the hospital on Saturday, held by the staff at the UI's NICU to remember babies who died there. They recognize babies for two years, because they have found that in the first year things may be much too raw to allow parents and other loved ones to attend. We went last September, and decided to go again this September. As Mary said, the thought of them reading Will's name without anyone there just didn't feel right. The three of us went, and it offered a great opportunity to remember Will and reconnect with some of the people who took such good care of him during his short life.

It was particularly nice to be able to introduce Edward to many of the people who cared for his brother. Last year, Edward, still in the womb, was the object of joy and fear, because the caregivers at the service were happy that we would have another child but also concerned because of our experience with Will. They counted the week's of gestation with us and expressed hope that we would make it well beyond the 24 weeks Mary carried Will. Seeing Edward's ample cheeks, wide eyes and quick smile, they were able to share in our elation.

But Will was never far from our thoughts. A couple of his nurses said they still think of the room where Will lived out his entire life as "Will's room," a testament, we hope, to his strength as much as it is to his frustrating lack of progress while he was there. He still is touching people, his life, however short, still full of meaning.

So, about that song: I thought it would be more difficult to hear, much as I thought the service would be a challenge. Both were, but I think we're getting better at handling those emotions, the pain now often more of a dull ache that slips away to reveal the many happy moments within our experience. We'll never "get over" this, but it does get easier. No one would ever wish for this kind of pain -- Saturday's service was a meeting of a club no one in their right mind would ask to join -- but I'd be foolish to say that our experience with Will hasn't made us cherish every moment with his brother all the more. As Bono summed up, "It's everything I wish I didn't know except you give me something I can feel."

2006-07-19T20:14:00.000-05:00

If prayer is the attempt to understand God, then grieving is the deepest form of prayer, rising from the body and soul and mind, asking God and really and truly wanting to know, no matter what the answer: Who are you? Why did you create a world with pain? Why is life this way? What are you? Because you are not what I thought you were.

Grieving, at its deepest level, is to acknowledge that creation can be cruel and that people suffer. To look at this truth, to allow yourself to feel it, you are forced to consider the nature of this world and this existence. You can ask how this can be and who set this up and why this happens. To grieve is to ask God the hardest questions. To grieve is to ask who God really is. It's to change your perspective on all other human beings and their relationships to one another and to you and your place in this world. To grieve is to start over, to be re-created.

This passage is taken from Fumbling, a book written by my neighbor, Kerry Egan, about her pilgrimage to Santiago de Compostela as she tried to make peace with her anger and grief following her father's death. I've been reading this book off and on for a few weeks now and have been touched by several of her observations and reflections. But none so profoundly as the above. I read it over and over, amazed at how clearly she captured the spiritual confusion that has accompanied my grief.

Throughout Will's life and several close calls when we thought we'd lost him, I told myself that I could not live in a world that allowed such an innocent to suffer and die for no reason or believe in a God who was powerless to prevent such pain. When Will died many people tried to offer solace in any way they could, often speaking of Will in heaven with God and no more pain. I didn't want Will to have pain, never wanted him to suffer, but I also didn't want to have to lose him to end his pain. "So what if he's with God now?" I raged. "I want him here with me!"

I thought that the miracle of Will's life would strengthen my faith and John's--who could deny the power of God's work in healing our tiny baby from the roller coaster of illness we witnessed each day? For throughout his life, I never doubted that he would be saved. The night he died, I was sure that my faith died with him. "What are we going to do?" I asked John over and over. "How will we go on?"

We did go on of course. But we went on in a world profoundly altered by what we'd been through. We wrote in this blog about trying to find a "new version of normal" for there was no way to return to what had been normal for us before Will lived and died.

I struggled with faith--continue to struggle, actually. Prayer seems so powerless against the forces of grief, so full of questions for which there will never be answers. I think that's why Kerry's passage struck me to the core. Grief isn't soothed by prayer. Grief is prayer. I sometimes worry about letting myself get bogged down in the weight of this grief, but if I think of it as prayer, it doesn't feel so heavy. It's a weight that is part of my new normal. It's the weight of Will, and I don't have to let it go.

2006-06-26T21:46:00.000-05:00

We had a family reunion this weekend and it was our first opportunity to meet our nephew/cousin Sean, who was born about two months after Will died. I had thought it would be hard to see him, that I'd look at him and only think of what should have been. I think John and I had a moment of that when we first saw him run across the lawn, but it didn't diminish our joy in meeting him and watching him with his sisters and cousins.

We have several friends who have children born just before and just after Will. I do sometimes think, "That's what Will should be doing," or "That's how big he'd be by now." But I'm also starting to believe and accept that actually, Will was never "supposed to" do any of that. His life was short but so powerful. He carried out his life's work in just under 13 weeks. It hardly seems possible, but we have reminders all around us of the profound meaning and value of that short life.

In fact, the greatest reminder of all is his brother, Edward.

2006-05-23T15:20:00.000-05:00

I've been thinking a lot about Will lately, the thoughts spurred on by the absolute joy brought on by the time I get to spend with his brother, Edward. There are many times that I'll be sprawled on the floor next to Edward while he bats at the various toys that hang over him on his playmat, and look up at the photo we have of Will on a bookshelf in the living room. There they are, my two boys, one playing rambunctiously, and the other who will never get that chance. The result is always an oddly intermingled feeling of joy and sorrow.

I wish so much that Will was here with us, that he could be here on the floor, playing with me and his younger brother. Of course, we'll never get that chance. But that doesn't mean Will is any less with us. I talk to Edward about his brother quite often, telling him about how strong and brave he was, about how his big brother is watching out for him. Will's books are now Ed's books, and every time I read Ed "Two Little Trains" or "Guess How Much I Love You," I think of sitting at Will's bedside reading to him in the hope that it would be calming enough to raise his oxygen saturations. Any time I get frustrated when Ed gets fussy and I can't seem to console him, I need to think of those times with is brother to remember what true frustration feels like.

It's difficult sometimes seeing Ed and thinking about all of the things Will never will get to do. Mary and I always dreamed of being able to bring Will home and play with him like this, to have him to care for without the need for 24-hour nursing assistance. It's amazing how easily our lives have adapted to Ed's needs, but knowing what was taken away from us with Will's passing, we don't take anything for granted.

This past month we've been involved in a lot of things that bring Will to mind -- the March of Dimes Walk America, a walk for the Pre-eclampsia Foundation and a banquet to recognize perinatal specialists last week -- but it is the time I spend with Edward, watching him play, that make me miss Will the most.

2006-04-29T15:40:00.000-05:00

Thanks to everyone who supported Team Kenyon in this year's March of Dimes WalkAmerica, remembering Will and celebrating Edward. Our Iowa City walk was this morning and we had 14 loyal walkers on our team, despite a persistent drizzle. Edward decided to stay at the park in his cozy stroller with Gram and PopPop who report that he slept through the whole thing while they pushed him around and around the picnic shelter. The rest of us navigated the puddles and completed the six mile route in a little more than two hours. (We're not convinced it is a full six miles, but we'll take credit for it anyway!)

Some sad news though. The University of Iowa student who leads the UI Collegiate Council March of Dimes group (the group that dedicated last year's walk to Will) lost a nephew this month due to complications of his premature birth in November, twelve weeks too soon. He was five months old. His twin sister is home and doing well. Our hearts go out to her whole family. We are so familiar with that emotional roller coaster and the joy and sorrow of loving a new baby while still longing for the lost one.

This is why we walk. This is why we are so grateful for those who walked with us, those who sponsored our walk, and those who support us each day.

2006-03-29T20:02:00.000-06:00

The power of Will continues to amaze me. I posted Sunday about March of Dimes and by Tuesday afternoon I'd met my fundraising goal of $250--amazing! Three generous sponsors are people we've never met but who have gotten to know our family through these blogs. They wrote us notes to say how much they've been touched by Will's life and our family's journey over the last year. For a little guy, he sure has had a big impact on the world.

I never mentioned another "gift from Will," which is my sister's job. She had been a postpartum nurse but after our NICU experience she was interested in that type of nursing as well so she accepted an offer for cross-training at her hospital. This winter there were some staff cuts and reassignments, but her job was safe because of her ability to care for mothers and babies, healthy and challenged. Will's looking out for all of us and it feels good to know he's there.

John also has now registered as a Team Kenyon walker and set a fundraising goal. Since we've met our first goal, we'll see how much we can add. It's a little confusing that he has to have his own page, but that's just how it's set up online. Each walker has his/her own page even if walking with a team like ours. Some teams set collective goals, but since our team is still assembling as we determine who will be able to come to the walk, we'll just be happy to get together on April 29 and celebrate whatever amount we're able to contribute to the important work of the March of Dimes.

2006-03-26T12:23:00.000-06:00

Once again we plan to participate in the March of Dimes WalkAmerica in Iowa City on Saturday, April 29, and we invite you to join us.

Will's brother Edward is strong and healthy, but it is important to remember that his birth, like Will's, was premature. Of course there is an incredible difference between being born five weeks early and being born 15 and a half weeks early. In our case, it's a difference of life and death.

We have created a website for Team Kenyon and invite you to join us in whatever way you can--physically (by walking with us or in your own hometown), financially (by making an online pledge toward our fundraising goal) or morally (by encouraging us to get up and get moving in preparation for the 10K walk.)

Clicking on the Team Kenyon link above will take you to our team website where, if you scroll to the bottom, you'll find links to donate and/or to register to walk with us or in your local WalkAmerica event.

We have always been lucky to be surrounded by loving and supportive family and friends, but never has that circle been more vital than in the last year and a half. We can never thank everyone enough for all that you've done and continue to do for us. Participating in WalkAmerica is a way for us to share these blessings.

2006-01-22T15:28:00.000-06:00

Dear Will,
A year without you. It hardly seems possible. Maybe because we're never really without you. You remain central in our lives and hearts, everywhere we go and in everything we do. You gave us a preview of life as Mom and Dad, taught us patience, worry, joy and love as we'd never known it before. And now you've sent us Edward, perhaps to ease the blow of this anniversary but certainly to love and treasure as much as we love and treasure you.

No one can ever take your place. Nothing will ever make us forget. The mere thought of this date, January 22, conjures the emotions as if not a minute had passed in the iterim. I still see your face. I still hear the doctors. I still see myself holding you, staring at you, wondering how I might go on without you, knowing that letting you go was the only way to end your pain. Our hearts still ache for you and always will.

No one ever called you "big" until you became a "big brother." Edward will always know you are near, watching out for him, cheering him, laughing with him, loving him as we love him and love you. We're a family in so many ways beyond the visible. Others may not see it, but you are with us always, giving us wisdom, reminding us of what is important. We'll keep you close this day and all days.

Love,
Mom

2006-01-03T03:58:00.000-06:00

When the Lord closes a door, somewhere he opens a window.

I'm not sure where this originated, but I associate it with the movie The Sound of Music, which I watched over and over as a child and still love today. It came to mind tonight as I was up late with the ray of light shining through that window.

Some readers of this blog may not know that the window opened for us around Memorial Day when we discovered, quite to our surprise, that we were expecting another child. Will's brother Edward Jesse Kenyon was born on Christmas Day. He has brought new light to our lives but also reminds us of all we lost when Will died. This blog is the story of Will's life and ours with him, and now Edward is part of that story as well. We'll be sure he knows all about his brave, strong brother who will always look out for him as he has for us this year.

2005-12-19T14:12:00.000-06:00

Here's another national story about prematurity, this one using a 24-weeker as an example. This little girl had a PDA too, and while she avoided the surgery that Will had, she faced complications from the the medicine used to treat it. Few emerge from the NICU completely unscathed, it would seem.

2005-11-21T20:02:00.000-06:00

Our friend Erin wrote a great story in today's Des Moines Register about the Mother's Milk Bank of Iowa. I wrote about this a few weeks ago in the context of Will's memorial fund distribution. It's such a great service they provide so I'm happy to see them get some attention in the state's largest newspaper. (I think this link will only stay live for a week.)

2005-11-04T19:30:00.000-06:00

Last night we helped our local March of Dimes raise $100,000 at its largest annual fundraiser, the Chef's Auction. Fifteen local chefs donated food for the evening as well as packages for auction--dinner for 20, Superbowl party for 30, cooking lesson and dinner for 8, etc. There was also a silent auction and what they call the "mission auction," which consists of direct cash donations to support the group's work with families facing the challenges of prematurity. The event drew about 300-400 people, filling the largest event room in the UI student union.

I was asked to give a brief speech, sharing Will's story and our experience to help those in attendance understand what families go through. John ran the slideshow so that we could share some of Will's pictures. It's so hard to understand how small he was, especially when his picture is projected on a huge screen, but I think people got the idea. It was difficult to get through toward the end, but John and I vowed that Will's life would continue to have meaning and purpose and this is another way for our little guy to make a big impact. I heard lots of sniffling through the crowd as I spoke, and the organizers said they raised more money in the Mission Auction section than ever before, possibly because we shared what our loyal blog readers already know--our decision to contribute $500 of Will's memorial fund to the March of Dimes.

It was a great event and so heartwarming to see so many people dedicated to saving babies. Here is my speech:

March of Dimes Chef's Auction
November 3, 2005

Almost as soon as we began telling our friends and family in the summer of 2004 that we were expecting our first child, they began asking what we would name the baby. We thought they were jumping the gun a bit. We had months ahead of us to consider many different aspects of parenting, and selecting names would fall somewhere on the list after following a healthy prenatal diet and exercise routine, choosing a safe and sturdy crib and car seat, and learning infant CPR. While spending the 23rd week of my pregnancy at home on the couch, weakened by what seemed to be a lingering stomach virus, I never considered that in a matter of days John and I would be skipping over a full pre-natal "to do" list and focusing on what to name our tiny son.

When I saw my OB for my 24-week prenatal appointment, I learned that it was not a stomach virus causing the pain searing in my abdomen for the previous week, but in fact, an inflamed and endangered liver. I was diagnosed with severe preeclampsia with HELLP Syndrome. The only cure: deliver the baby within the next 24 hours.

Shock does not begin to describe our reaction. I had heard of preeclampsia but thought the treatment was typically bedrest. I had never heard of HELLP Syndrome. It would be weeks before I fully understood how serious it was and that it might have killed me. At that moment I had only one thought, and clutching John's hand with tears streaming down my face, I struggled to voice it: "Is the baby viable yet?" We were told that University Hospitals neonatologists have a 60 to 70 percent success rate with 24-week premies. We would soon learn firsthand of the knowledge, dedication, and skill that contribute to that statistic.

There was little chance of sleeping that night and at one point when we were actually alone, at a loss for anything to say or do, John and I started talking about names. We never did settle on anything for a girl, but chose William Albert for a boy. We'd call him Will since Grandpa, his namesake, is Bill. A little more than 24 hours after I was diagnosed and admitted, Will was born by emergency C-section, let out a single cry--the only one we would ever hear--and was immediately intubated and taken to the NICU. John faced an untenable choice--stay with his sick wife or follow his tiny son. Once my surgery was complete, I assured him I would be fine and sent him to find Will.

Will weighed one pound, two and a half ounces when he was born on October 26, 2004, fifteen and a half weeks early. His eyes were still fused shut and would remain so for a little more than a week. John's wedding ring slid all the way up to his shoulder. The tiniest Pampers available had to be folded in half to fit him. He had such difficulty regulating his body temperature that the nurses wrapped the sides of his warmer bed with aluminum foil to keep the warmth from the heat lamp above reflected inward toward him. Plastic cling wrap was stretched from edge to edge on his bed, also keeping the heat in.

But he was strong, a fighter from day one. Any number of complications could have taken him from us in a matter of hours or days, but his name turned out to be almost prophetic, for he had a Will to live, incredible Will power, an iron Will. He fought through infections, a heart defect and corrective surgery, the constant pounding of the high frequency ventilator shaking his lungs to keep them open. He became the surfactant king of the NICU, responding so well to a treatment considered experimental at other hospitals. Will's doctors believed that as long as it kept working to reopen his lung sacs reducing his oxygen needs they'd continue to give it to him hoping to get him over that one last hurdle that always seemed to be in front of him. His obvious determination to overcome the odds against him stole the hearts of everyone who came in contact with him, even the briefest encounter.

Our lives were so focused on his daily ups and downs that we lost track of where our hearts ended and his began. They told us from the beginning that being parents to a premature baby would be like riding a roller coaster. We discovered as we went through each day that it was no ordinary roller coaster, but one running backwards and in the dark. We never knew whether we were headed up or down and many days felt like we were dangling upside down, but it never crossed our minds to get off. If Will could persevere so could we.

We relished the highs--the day he opened his eyes, the way he calmed down when we cupped a hand over his head and gave him a finger to hold, the day we got to hold him for the first time, six weeks after he was born. We endured the lows--the night his carbon dioxide levels approached a deadly poisonous level, the day we left the room and waited an agonizing hour and a half while they operated on his tiny heart, the night the phone rang at 3 a.m. and the nurse told us, "We're having trouble with William. We need you to come in." And the night, after a long week in which we left the hospital only once, that they told us the infection Will had been fighting was overpowering the antibiotics. The boy who conquered every hurdle from October through January finally faced one he could not overcome. They could keep him alive long enough for our parents to drive from Des Moines and Chicago to hold their grandson for the first and last time and say good-bye.

So many times John and I told him that if there was anything we could do to take away his pain we would. We didn't know, or chose not to think about what that promise really meant. I held him as he slipped away, knowing that in place of his pain would be ours forever. And that was the only thing I could do for him as his mother.

When Will was born I naively consoled myself that he would be OK because he was not sick. He was born early because I was sick. I didn't understand at first just how sick being born so soon would make him. As we watched Will's neighbors move in and out of the adjacent NICU rooms and talked to their parents about our shared experiences, we learned of amazing medical treatments for babies with any number of illnesses or deformities. But there simply is no treatment that can fully substitute for lost time in the safe and nourishing environment of a mother's womb. There are many partial solutions that, pieced together, gave us our 12 precious weeks with Will. Those treatments provide some families with more time, even a lifetime; some less. One of Will's doctors told us recently that he hopes one day to be put out of business when the causes of prematurity can be identified and prevented, rendering those treatments and his application of them unnecessary. That's why we are all here tonight--to enable the March of Dimes to support physicians and families currently facing the daily struggles of prematurity and to express our hope and belief that together we can reach a point where the doctors can retire to the garden or the golf course and all the babies will be born full-term.

For us, that hope started in the midst of our grief, when we asked our friends and family not to send flowers upon Will's death but to contribute to a memorial fund that would support other babies who face the same struggles Will did. The outpouring of generosity and love overwhelmed us and enabled us to make several significant contributions in his name. Tonight we will present the final contribution of $500 for the Mission Auction. We are honored to lend Will's name to this important cause and hope that Will Kenyon is a name that stays with you as you continue to support the important work of the March of Dimes.

2005-11-01T09:51:00.000-06:00

I received a bulk e-mail from the president of March of Dimes today thanking us for the contribution we made to their Hurricane Katrina fund from Will's memorial fund. I thought I would share what she wrote about how they are using the money down there. These are specific activities being funded:

Providing prenatal care and counseling for pregnant women and organizing and deploying outreach workers and trained health professionals where needed.

Obtaining a mobile prenatal care van to bring care to pregnant women and babies in shelters and others who lack access to regular health care facilities.

Continuing to develop new, updated health education specifically designed for pregnant women and for new mothers displaced from their homes.

Expanding the March of Dimes program to provide support and comfort for the families of sick and premature babies in hospital neonatal intensive care units (NICUs) in affected areas.

Delivering multivitamins with folic acid to women of childbearing age and pregnant women to reduce the risk of neural tube defects.

Making infant and child vaccinations available for hospitals, schools, shelters, clinics, and in other convenient locations.

They also have a March of Dimes weblog that offers firsthand account by the organization's director of NICU Family Support of her experiences in the days immediately after her arrival in the Gulf region in the days after Katrina hit.

2005-10-26T07:42:00.000-05:00

Happy Birthday, Will.
Mom and Dad love you so much, and we miss you every day.

2005-10-09T19:51:00.000-05:00

This weekend I cleaned up my garden, harvesting the last of the tomatoes and then pulling up the plants to bag for yard waste recycling. It's kind of a gross job because I'm not a meticulous gardener--I don't worry about trying to pick up tomatoes that fall to the ground before I have a chance to pick them from the vines. They don't smell very good after a few weeks down there, and when you pick them up they squish, soaking your work gloves. While I was working, I was thinking of last year when this disgusting chore fell to our amazing friends, who swooped in one Saturday with rakes and bags and cleaned up our whole yard while we sat with Will in the NICU.

Our friends and family did many amazing things for us last fall and winter, and we were continually overwhelmed by the outpouring of support and love. It was absolutely essential to our being able to continue riding that roller coaster every day. We knew we were not alone. That flood of love and support continued and even intensified when Will died. Cards, letters, phone calls, trips across states and across country. And donations. Oh, those donations to Will's memorial fund had us opening our mail daily with mouths agape at the generosity he inspired. Nearly 200 individuals, couples, families, and organizations contributed more than $12,000 in all, a sum we never envisioned on that horrible night. In all honesty, we just wanted to offer an alternative to flowers so that we wouldn't be surrounded by death as they wilted. Will's life had to be more than a road to death. You made our wish come true--that his death would not be an end, but a sign of hope and a chance for life for other babies and families.

In early September we sent the first $500 from the fund to the March of Dimes for its efforts to support premature babies and families in the aftermath of Hurricane Katrina. We plan a second $500 donation to the organization next month at a local fundraiser at which we will speak about Will's life, the tragedy of prematurity, and our hope for a future in which babies don't have to fight battles like Will's.

We directed $2,500 to the music therapy program and $3,000 to the Neonatal Intensive Care Unit, both at University of Iowa Hospitals and Clinics, Children's Hospital of Iowa. "This gift is presented through the generosity of those who loved Will Kenyon," we wrote in notes accompanying each donation. "We wish to honor his memory by providing comfort for other babies and support and educational opportunities for their parents." In music therapy, equipment replacement costs add up fast as the lullaby CDs and portable CD players in the babies' rooms wear out from repeated use. It is amazing how these soothing tones work their magic on such tiny ears and brains. Will's oxygen levels almost always held steady when we turned on his music or when the therapist came to sing to him. In the NICU, the soft blankets the babies are nestled in are not part of the budget, but are provided through donations and gifts like ours. The nurse manager also mentioned that they were hoping to purchase some equipment to allow parents to watch the required educational videos in the babies' rooms (with headphones, of course) so that they wouldn't have to spend precious moments away in some room with a VCR. We never watched those videos. When we were there we wanted only to be with Will. As needs arise, our gifts will be available and we know that this dedicated staff who loved Will as we did will honor his memory.

The final $6,000 in the fund went to the Mother's Milk Bank of Iowa, which provides donated breastmilk to NICU babies whose mothers are not able to provide it. This works in much the same way a blood bank does--with carefully screened donors, of which I was one. Breastmilk is the best form of nutrition for babies--so beneficial for the most fragile in the NICU, in fact, that it is considered medicine and is billed that way and paid for by insurance. Pumping breastmilk was absolutely essential to my continued optimism that Will WOULD come home and he would need me to be ready to feed him. When I ran out of freezer space at home and knew I had more than enough for Will's future needs, I began donating. There are fewer than a dozen milk banks in the United States according to the Human Milk Banking Association of North America. We are very lucky to have one here in Iowa, and it is expanding now beyond University Hospitals to serve NICUs in Cedar Rapids and in Davenport. This expansion means they'll need more milk, and when they get it they'll need more freezer space to store it before and after pasteurization. Our gift will provide new freezers.

We can never say enough how much it means to us to be able to honor Will's life in this way. None of this would have been possible without you, our family, friends, and in some cases, complete strangers, who have walked with us on this journey.

The other thing I did this weekend was to walk a 5K with two friends, one of whom pushed her seven-week-old daughter in a stroller. "Maybe we can do this again next year, and we'll all have strollers," she said. Something to look forward to.

2005-09-25T19:26:00.000-05:00

Yesterday we attended a memorial service hosted by the NICU staff in memory of the babies who have died in the last year. It was a really nice service--a mix of readings, reflections and music, all with a contemplative, comforting tone. They read the names of all the babies and presented a rose to each family who attended. One of Will's doctors shared some thoughts about caring for our children and the impact each one made on him and all the staff. He said he knew we all had holes in our hearts and that his words would not patch them, but he let us know that the staff too feels that emptiness and wishes there had been more they could do. It drives their research, he said, propelling them daily toward potential answers to the riddles of prematurity and neonatal disease. We knew all along from our interactions with the NICU staff that they were all just as committed to Will's life as we were. It was nice to hear that on some level his life still touches them. He is no mere statistic.

I also realized for the first time yesterday that the question, "How are you doing?" no longer brings me up short. I can answer "OK" and not feel phony. I'm sure I've been doing it for a while, but it took that context, hearing the question from Will's caregivers, to bring it to a conscious level. It's not that people don't ask about us anymore. Lots do every day. Sometimes the question is clearly about how we're actually coping. Other times it's more of an idle inquiry, not really seeking a detailed response. Sometimes I don't focus on the difference. But yesterday it was clearly a question of concern, from people who haven't seen us since the most devastating day and week of our lives. Just as we may remember people from high school looking and acting exactly as they did on graduation day, despite the passage of time and onset of maturity, until they saw us yesterday, many of the staff probably held a vision of us in their minds as helplessly grief-stricken, paralyzed at the thought of going forward without Will.

We are still grief-stricken. There's no question. Any number of memories and scenes replayed in my head can reduce me to full-body sobbing. Even writing this blog brings tears almost every time. But we're not helpless and we're not paralyzed. Like others who have walked this road before us, we move forward as we can or stand still when we need to. But we incorporate our experience into our new version of "normal" and we know that we will be OK.

2005-09-09T21:31:00.000-05:00

I received an e-mail solicitation today from Dr. Jennifer Howse, who is the president of March of Dimes. She talked about the specific needs March of Dimes is meeting in the Gulf Coast region, helping premature babies, their parents and expectant mothers as they deal with Hurricane Katrina, the flooding and its aftermath.

Mary and I immediately had the same idea, and decided to donate $500 of Will's memorial fund to March of Dimes for its work to help those dealing with the hurricane. We are in the final stages of determining how to disburse the funds we collected, and this fits well with our desire for the money to have as large an impact as possible. As I mentioned in the post below, we know how difficult it is to have a baby in the NICU; to deal with that and the loss of a home or loved ones is unimaginable.

To find out more about how the March of Dimes is helping those in need, go here. This was all I needed to read to know we needed to help: "We are providing support and comfort to families of more than 100 sick and premature babies who were transported to the neonatal intensive care unit (NICU) at Women’s Hospital of Baton Rouge, Louisiana." Will was one of about a dozen babies in the most intenstive part of the University of Iowa NICU, and we saw the amazing amount of resources it took to care for that many in what comes as close to being an ideal situation as possible.

When we finalize our plans for the rest of the fund, we'll report it here. For those who wish to contribute to the March of Dimes effort in the Gulf area, see the link to the right.

2005-09-07T13:04:00.000-05:00

As if the news coming out of New Orleans these days isn't scary enough, the stories dealing with hospitals -- neonatal intensive care units in particular -- are downright horrifying. As with any intensive care units, NICU's depend on electricity. When it goes, things can go bad in a hurry. Mary and I read reports all week about NICU nurses needing to hand-bag premature babies because ventilators weren't working. Fans needed to be aimed at beds to keep them cool in un-air conditioned 90+ degree heat -- Will, in contrast, was always in a precisely controlled warmer bed -- and, perhaps most distressing, parents were evacuated and told to meet up with their babies later in the week at hopsitals out of state. It was hard enough leaving Will's side for a few hours each day to go to work; I can't imagine being able to leave him in those conditions.

From stories like this one, it sounds like things are getting back as close to normal as possible right now. Just when you think your own situation is nearly unbearable, you are reminded that things can always be worse.

2005-08-09T21:00:00.000-05:00

Over the weekend we sadly welcomed our friends B and J into the club. B was two weeks away from her due date when she stopped feeling the baby move. He was stillborn a week ago today. With few exceptions I have avoided friends with babies and those expecting them for my own selfish reasons, which I think they all understand. So I really didn't know how things were going for them. As her due date approached I kept hoping they'd include me in the email announcing the happy arrival, but I was afraid to call or email to see how they were. Then I opened the paper and saw their beautiful, perfect son with the most touching and heartbreaking description of his life cut short.

At the memorial service, friends were invited at one point to share the hopes and dreams that now would not be fulfilled. A million thoughts jumbled in my head and I knew the chances of me being able to say something both appropriate and coherent were close to zero so I sat and listened and tried to process all those swirling emotions. It all brought back so vividly the pain of losing Will, but also a whole new set of fears for the future.

After a few days, I've completed at least one of the thoughts I was trying to work through on Saturday morning. When B and I were in college, we'd see parents pushing strollers through the Ped Mall and on at least one occasion, one of us was so overwhelmed with yearning that we blurted out "I want a baby!" We knew it was neither the time nor the place for us, but just as certainly, we knew what we hoped for in the future. I'm not sure we ever got as far as envisioning our children together--we ended up taking different paths for a few years and never could have guessed that we'd end up trying to conceive at about the same time. And we certainly never would have believed that our sons would be together...but without us.

So here we all are. In a place we didn't know existed and would not have chosen, but can not escape. We take one day at a time, wondering whether we'll ever see a baby in a stroller and feel hope, not loss.

2005-07-26T22:33:00.000-05:00

Today was the first anniversary of the first issue of the Corridor Business Journal, my employer for the past year. We had a reception to celebrate, and as part of that, we laid out a display with each of the 52 issues we have made. Looking at them, I was taken aback by how recent some of the stories feel. It doesn't seem possible that we did some of these months ago. At the same time, some of the issues are a hazy memory, while others I don't remember at all. The fact that I was putting out a paper (with a lot of spectacular help, I might add) while still going to the hospital for hours each day to see Will is pretty amazing to me. I don't recall much from those three months. The issues I don't remember are those from the week Will was born, the week he died and the two weeks after. I wasn't there at all and the staff came together to put the paper out in my absence. I needed to be gone and they made it possible. It would have been a pretty remarkable year under any circumstances. Dickens might have had a year like this in mind when he wrote about it being the best of times and worst of times. There are parts I would love to have to do over, of course, but I wouldn't have missed any of it.

2005-07-11T10:15:00.000-05:00

Mary alerted me to a story in the Chicago Tribune last week about the use of nitric oxide to help premature babies. As has often been the case with things like this, a story that once would have been skipped over is now read with intense interest. It talks about two studies on the use of nitric oxide and the fact that they came back with contradictory results.

Will was on nitric oxide therapy for much of his short life, so we're curious to see data about its effectiveness. Will started out in a similar study being conducted by his attending physician. He was a prime candidate for the therapy because of his underdeveloped lungs. Early on in his treatment, he wouldn't necessarily have been put on nitric oxide, but because the NICU was helping to conduct the study, we were asked if Will could participate. Because nitric oxide is thought to help underdeveloped lungs and we knew that our son would need all the help he could get, we agreed. It was a blind study, so we had no idea if the tanks hooked up to his ventilator had nitric oxide or some benign control gas. As Will's condition worsened early on, they pulled him out of the study to make sure he actually was getting nitric oxide; the doctors were confident enough of its effectiveness that they wanted him to be on it.

So, did it help? Who knows? It certainly doesn't seem to have hurt, and even the study cited in the Tribune article that calls into question its effects doesn't suggest that it does harm so much as that it has no real benefit. Regardless, it is important research that we never would have known about or thought to have an impact on our lives. Our experience with Will certainly opened our eyes, and I know that I read about all sorts of medical news now with a fresh perspective: You never know when something is going to hit close to home.

2005-06-26T21:26:00.000-05:00

After several weeks of putting it off, we went to meet Friday with Dr. Colaizy to go over Will’s autopsy. It was an emotional trip from the start. Her office, and those of all of the neonatology staff, is two floors directly above the NICU. So, we drove the same route we did every day for three months, parked in the same ramp, walked across the same walkway, took the same elevator… only our purpose and destination differed from the last time we took that trip, which was the Friday morning when we came in to find Will clinging to life.

The day before that, we had gone home happy because, after many hours of not peeing, Will was starting to go like crazy. It seemed to prove that things were working again and that, like every time before, he would face down a challenge and recover. When we returned that Friday morning after our first full night in our own bed that week, he had faced another long stretch where he didn’t pee. As the day wore on and he didn’t pee or respond to any number of other things, our hopes dimmed. The doctors, who had been upbeat about Will’s prognosis the day before, seemed defeated. They pulled out all of the stops, but told us they were really worried for him. Soon, Mary and I were calling our parents to say they should come if they wanted a chance to say goodbye to their grandson and we were trying to prepare ourselves mentally for losing him.

I’d long held out hope that Will’s autopsy would show something that would explain it all. What I was looking for, of course, couldn’t be explained by medicine, because the questions I have really are unanswerable. That said, we didn’t learn much from the report that we didn’t already know; nor, it seems, did the doctors. But it was helpful for them, because the report confirmed that the things they thought were wrong with Will actually were wrong, and that the treatments they were doing were the right ones. In that last week, however, he simply faced too much. Dr. Colaizy said it was her opinion that the chylothorax (the leak in his lymphatic duct that was filling the area around his lung with fluid) is ultimately the thing that proved to be too much. That had pretty well resolved itself by that last week, but the damage done by not having food for all of that time, including damage to his liver, was too great. In that last week he developed an infection that caused him too many problems, and as they stacked up, Will lost the upper hand. The report details what is called a multi-system failure; essentially, his body was shutting down. That Thursday rally was a strong little boy responding a bit to everything the doctors had to throw at him. By the time Friday rolled around, the infection had more damage to do, but he had nothing left.

In the end, what the report does is to reinforce what we already knew about Will – he was one tough little guy. The litany of problems in the report is staggering. Most of the things listed are problems that developed in those last few days as the infection took its toll, and don’t really accurately reflect his condition for the bulk of his time with us. But knowing the totality of what he faced those last couple of days, and the poking and prodding and constant attention that it required from the nurses and doctors, I’m amazed that he still was able to grab a finger when offered or just to look so peaceful when he obviously was hurting.

That last night, the doctoral fellow who was overseeing Will’s care was trying everything he could to get Will to respond. But as his blood pressure continued to drop and his lungs grew less and less responsive, it was clear that there was little left to do. After Will’s last x-ray, the fellow showed me the image and said, “Dad, it doesn’t look good.” He then said that there were things they could do to keep Will going until morning, but it would essentially be to give us a bit more time with him and to postpone the inevitable. We chose to let him go, and I’ve said here before that it was the hardest thing we’ve ever done. But seeing this report, I know it was the right choice. Will fought hard, and no one gave up on him – not us, not the nurse and doctors; no one. But when it was time, we did what we needed to do

We added this report to a stack of things related to his stay in the NICU that we may or may not ever look at again. It is an understandably clinical look at the end of our son’s life, and we’re not eager to revisit that. I’m glad we have it, these facts and figures that put his struggle into context. But that’s not what Will is to us. Will is in the photos we have of him or the e-mails sent by family and friends to share our joy or the countless memories we have of being with him or even this blog. He is that feeling of love and longing and pain and joy that we carry around with us every minute of every day.

2005-06-20T09:59:00.000-05:00

Father's Day came and went much like any other Sunday, and I'm glad. What would seem to promise to be a rough day was actually pretty easy. I suppose that's because I've never been one much for big celebration of any holiday. As Mary can attest, if my birthday passes with little more than a card and maybe a pizza, I'm pretty happy (save for my last birthday, of course, where I got the best present I could ever imagine). Will is such a big part of my life that it doesn't take a special day to make me think about him, or miss him. As Mary has written much more eloquently here, it is strange being a parent without a child; to have that child taken away before you really even had a chance to be a parent. There is a term for a child without a parent, of course, but is there an term opposite from orphan to describe a parent who no longer has a child? Not that I'm aware of, and I think that it's probably because no one word can convey all that it should.

So, while I certainly didn't get the chance to do it for very long, I really enjoyed being a Dad. When I called my own Dad yesterday to wish him a Happy Father's Day, he reminded me that I had been a good Dad for Will. I hope so. The situation made it difficult, but as much as I could, I tried my best to parent the heck out of my little guy.

2005-06-09T21:47:00.000-05:00

Do you have children?

How to answer this standard "get to know you" question among casual acquaintances when the two choices are to make the innocent questioner extremely uncomfortable or to deny Will? I guess I'm fortunate to have had four and a half months to prepare for that question. It didn't make it easier, but I think maybe I was able to find a balance by simply answering "Not living." It's direct and honest and doesn't really invite further conversation on the topic. But I felt like I was outside myself hearing the words come out of my mouth and not really believing that I was the one speaking.

Tonight was another case of "I wouldn't be doing this if Will had lived." John is at a conference for business editors and my office is hosting the annual meeting of news directors and writers from all the Big Ten schools. We could not be in both places at once if Will were here needing our care. Maybe that's why it hit me so hard when one of our conference guests mentioned that two of his staff who otherwise would have attended had decided to stay home because they are "new mothers." I'm a new mother too, but once again, passing invisibly among the crowd.

2005-06-07T11:17:00.000-05:00

We have noted here the overwhelming abundance of pregnancy-related plot tangents in movies, but I've found that prematurity also pops onto my radar more frequently these days. Was it always there and I'm just now more conditioned to notice?

The latest example is an insert that seems to be in every magazine I've read in the past couple of weeks (as a still wet-behind-the-ears business editor, I read a lot of business magazines so I can at least sound like I know what I'm talking about). The insert is from Philips, touting its "Simplicity Advisory Board." Philips makes electronics of various sorts, and, thanks to this insert, I'm reminded that they make medical equipment as well, including neonatal monitors, designed with simplicity in mind, I guess. There on a full page is a big photo of a tiny hand reaching up to grab a mother's finger; below it is the tag line: "What if the hardest day of your life was the first?" Next to it is a picture of a monitor similar to the one we stared at for hours on end in Will's room, alternately cheering good numbers and worrying over bad ones.

Never mind the fact that Will's very own Philips monitor frequently acted up -- not in a way that ever compromised his care, but it certainly vexed his nurses who had trouble with it -- it is amazing to me that this was seen as a valuable way to market the company. Is this directed at people who might have a premature baby, people who should call the NICU and make sure they have Philips brand monitors, as if there is any planning or choice in any of this? Or are they simply letting you know that their products are so reliable that even this most delicate of tasks is entrusted to them? I do find myself shaking my head at the real "simplicity" here, as they talk about how "sometimes a mother's wedding ring can fit around (the baby's) wrist" or that the monitors are vital for "those first critical days." How quaint. Will could wear my wedding ring around his thigh when he was born, and you could replace "those first" in the latter statement with "all" to describe the days that were critical in Will's life.

It's just further proof that we might as well get used to reminders of Will's struggle in the most unlikely places. We have avoided films with obvious hot buttons, and haven't lined up for any baby showers lately, but overall we haven't exactly shielded ourselves from public contact. So, things like this are going to lurk out there, and at times they're going to hurt. I know I will be asked at some point if I have children and wonder about the proper response. I know I will see a toddler running around and wonder "what if?" and I know I'll probably be in a hospital again at some point, see a monitor and remember why I understand exactly what all of those numbers mean.

2005-05-19T20:50:00.000-05:00

A random column in our local newspaper today really ticked me off. I read it online and the tease said something about a "tough" mother's day. I probably should have ignored it, but I guess it's true that misery loves company. I clicked to the full article expecting a story I could relate to and a woman who might be a local kindred spirit. Instead it was this ridiculous column about how mother's day is "tough" because if her family doesn't shower her with gifts and attention she feels neglected, but if they do she feels guilty about all the times she hasn't been "supermom."

B-O-O H-O-O
(that's probably a generational reference; apologies to anyone who hasn't seen "The Breakfast Club" 142 times.)

But really, this is what constitutes a difficult mother's day? Please! I was telling John about it, trying to describe how it made me feel to read that, and it's difficult because I don't want to be the kind of person who thinks no one else's problems amount to a hill of beans because they haven't had to tell a doctor they understand there is nothing left to help their son and then ask to hold him while his heart stops beating. I guess it's all in your perspective. I hope this woman never experiences any more difficulty than that on mother's day. I would not wish this pain on my worst enemy, even the evil girl who tormented me all through junior high. But I think before complaining publicly about how "tough" things are, people might do well to think of how much tougher they could be and thank God or their lucky stars or whatever for what they have.

It's not easy. We all struggle with it. I had a good reminder tonight of the love surrounding us when I was looking for an email address and ended up scanning through the hundreds of messages in my "Will" email folder. I don't go there often--it's enough to know that the messages are all there. But every now and then, I re-read a few to recall the love and support that surrounded us while Will lived and when he died. I'm not so insanely at peace with myself that I actually feel lucky to have had this experience, but we are blessed to have such love in our lives and to know it. That's what enables us to endure the tough days.

2005-05-18T21:40:00.000-05:00

Nothing profound to write tonight, but I just wanted to check in. It's a fairly miserable, rainy Wednesday night and I have a couple of hours or work still ahead of me and plenty of distraction to keep my mind occupied. Still, as always, it seems as if I'm constantly thinking about Will. This weekend I made prints of a couple of my favorite photos of Will so I could keep him with me. Mary had been out at the time, and as I was slipping the pictures into my wallet for safekeeping, she came home. She asked what I had been doing, and I realized that I'd been talking with Will. I find myself doing that a lot, actually. I don't have extended conversations with him, but I do let him know that I miss him, let him know about things I wish he was going to be around for us to do together. He's such a strong presence in my life (and in Mary's life, too, I know, as well as in the lives of so many others), nearly as strong in his absence as when he was with us.

I ran into an acquaintance the other night that I hadn't seen in several months, and he asked how we've been doing given the fact that 2005 has certainly not been our year. I found in talking about it that the experience of being in the NICU every day has faded a bit; I no longer have dreams filled with the beeps of monitors and my stories about that time no longer revolve around treatments and medical equipment. It doesn't seem like such an immediate part of my life. But my time with Will is still very much with me. It's as if I've been able to focus, much as we did when we were at the hospital each day; all of the surrounding distraction has fallen away and left what is important. I think that's the way it ought to be. Slowly, all of that baggage is receding, and I'm left with the memories and feelings and joy and sorrow of having been with Will. Those photos in my wallet are just a token, of course; I don't need them to think about him or remember what it felt like to hold his hand or read him a story. But sometimes, when I'm talking with him, it helps to be able to look into those cute little eyes and let him know that I miss him, that I'm hanging in there.

2005-05-08T20:41:00.000-05:00

Yesterday we joined more than 300 people in Iowa to walk for preeclampsia awareness. This walk was part of the Preeclampsia Foundation's first annual walk-a-thon in 20 cities across the country and was organized in Davenport by family and friends of Shelly, the woman whose story I linked to here back in February. She died from HELLP Syndrome at University Hospitals in January, just before Will died. Her daughter lived though, and Hailey's stroller led the walk yesterday.

Several of our friends joined us and it was another beautiful Saturday morning--a little warmer this week. We walked along the Mississippi River for about 3 miles. I don't know if it's being with friends or walking for a purpose, but these cause/charity walks sure don't seem as long as my regular exercise walks. At the end, I met a few other women who had suffered from HELLP Syndrome recently. They seemed to have had more trouble with it than I did, especially after delivery, but maybe I was just so focused on Will that I didn't register my own physical woes.

We also met and talked to Shelly's mom, who told us her story--truly tragic. By the time they realized she would require a liver transplant and located a compatible organ, she had suffered brain damage and they had to let her go. Her mom was amazingly composed talking about all of this. I think they have just decided that the way to honor their daughter is to tell her story as often as anyone will listen, in hopes that someone else might be saved. One of our friends asked her about Shelly's daughter and she said, "Oh she's right over here." Before I knew it, someone else was standing in front of us with this beautiful sleeping baby girl in her arms. I had conflicting urges to scoop her up and cradle her in my arms or to run far away. I did neither. I stood there staring as the tears streamed down under my sunglasses. She's not your baby, I told myself. She's a motherless baby and you're a babyless mother. It's not fair for anyone. It just is what it is.

Pretty soon she was gone, but the woman who had been holding her came back and embraced me in a warm, comforting hug. "I lost a baby, too," she said. "I understand. It's so hard." We just stood there, strangers hugging for a few minutes, a veteran comforting a newcomer to this sorority no one would ever choose to join. She was Shelly's husband's aunt and she had lost one of her twins 18 years ago. It still hurts, she said, but you learn to live with it. I'm learning.

Mother's Day, 2005.

2005-05-01T08:23:00.000-05:00

Yesterday our parents and many friends joined us for the March of Dimes WalkAmerica event here in Iowa City. It was a beautiful day--cool and sunny. We ended up kind of bringing up the rear and it was a good vantage point to see the line of walkers stretching for two blocks in front of us.

The UI Collegiate Council chair spoke at the beginning of the walk telling the crowd about Will and that many of us there were walking in his memory. She got a little choked up talking about him and I'm sure others there joined us in our tears for a few minutes. It's not the most uplifting way to start your day, but I think it was probably a good reality check--a reminder of why we all got up and out there early on a Saturday morning.

Later in the day I went to mass, where I still have a hard time, but I still go when I can because I think staying away completely would allow the sorrow build up to an insurmountable hurdle and I'd never regain the peace I once found there. I started out teary, thinking about Will and the walk and the love and support that surrounds us, propelling us forward as we make our way through this daily jumble of emotions. Then a song began that has always stirred my emotional memories, ever since I was seven and it was played at my baby brother's funeral mass. The lyrics are based on one of the readings we used at the family service we had for Will:

I will never forget you my people. I will not leave you orphan.
I have carved you in the palm of my hand.
Does a mother forget her baby? Or a woman the child within her womb?
Yet even if these forget, I will never forget my own.

Luckily I had some tissue in my pocket, but I'm sure the people around me wondered what was going on. And then, just as the song was ending and I was getting myself back under control, a sunbeam came in through the stained glass directly to the place I was sitting, like a spotlight. My first thought was, "Hi, Will." My second thought was "If I saw this in a movie I would think it was so contrived and cheesy!" But I really did feel love and warmth in that moment, and I believe that Will can bring light to the dark places of my life.

I just need to keep walking.

2005-04-24T19:45:00.000-05:00

Thanks to all of our friends and family members who braved a chilly Lake Michigan breeze for the March of Dimes WalkAmerica in Chicago today. My sister Ann organized this group and reports that they collectively raised about $2,300 for the cause! The March of Dimes is leading the campaign to reduce premature birth by supporting research and by educating the public and health care providers.

When I was at the grocery store this morning a group was holding a car wash fundraiser and their signs said "March of Dimes." I think maybe it was the U of I Collegiate Council team that has dedicated their walk for Will this year. And I keep seeing donation jars in businesses, which I probably didn't even notice at this time last year. Every time I see one, part of me wants to jump up on the counter and hold it up, shaking it and shouting so it's impossible to ignore. But I think joining hundreds of people walking through Iowa City next Saturday will be a more productive (and sane) way to draw attention.

2005-04-12T11:04:00.000-05:00

People continue to check up on me, and say they miss being able to keep tabs on things through blog posts. Mary has really taken up the slack here while I've been strugglinig with doubts about having anything meaningful to say. So, I thought I'd offer this brief update and say I'm doing OK, all things considered. I think about Will several times each day, still sparked by things both obvious and not. Lately, I think about him as I go about my day, getting back into routines. The simplest thing, like running an errand while Mary is out doing something else, makes me think of what we had expected the spring to be like. One of us would always have been home to watch Will. Both of us would have been more than willing to make such scheduling changes if it meant spending time with him. I almost used the word "sacrifice" there, but it would have been incorrect. There is nothing I can imagine giving up that would have seemed anything more than trivial if time with Will was the alternative. Instead, we're able to get back to the same old things we had done before. I can go play basketball when I want (and this I need; you have no idea how out of shape you can get when your only exercise for three months is walking from the parking ramp to the hospital), we can go out to dinner without a thought or we can leave town on a moment's notice. How much would I give to instead be tied to the house to watch my son?

At least we have the opportunity to do something that feels consequential. We're really looking forward to the walks for March of Dimes and the Preeclampsia Foundation. Each allows us (and others who will join us) to do something. None of it will bring Will back, of course, but it all will help to keep his spirit alive as we work to help others avoid the same kind of heartbreak we face each day.

To that end, we said right after Will died that we would meet with his doctors in the spring to talk about what he faced and how our fund might help them to deal with that in other babies. Well, it's spring, and I can't say I'm much closer to being ready for that kind of discussion. We will do this eventually, however, and have the fund safely tucked away at the bank until the time is right.

So, thanks to everyone who continues to reach out through e-mail, cards and phone calls. It helps to know that people still are pulling for us. This is going to be a long, hard journey if these first couple of months are any indication. I really, really miss my boy.

2005-03-31T22:06:00.000-06:00

God always answers our prayers.
Sometimes, the answer is No.

I read this today and it instantly made me teary. Questions of faith are never easy, and our situation definitely has more questions than answers. My mom says it had better be a slow day when she gets to heaven because she will need a long time with God to get answers to all of her questions. I wish I had that confidence that the answers are out there and the patience to wait for them to be revealed.

I do find some comfort in faith, security in the belief that all is not random, that there is a plan and a loving God to guide us. But that's not always solid enough to cling to and it leaves me feeling adrift. I used to find solace in the rituals of mass, that sameness week after week no matter where I lived or what else was happening in my life or in the world. These days it's not solace I find but an empty ache. I thought at first it was the somber Lenten services, so I stayed away for a few weeks thinking I might find joy again in Easter. But it was the same. There's nothing about mass that I associate with Will--he obviously never was there and I didn't even go very often during his life--so I don't know what exactly makes me sad there. Maybe it's just the absence of that "old" happiness, the memory of my joyful weekly prayer while I was pregnant: "Thank you for another week with this baby. Watch over and protect us. Help my baby grow and keep me strong. And please also care for all pregnant women, especially Diana and Melanie and Kathryn and Kerry and Liza..."

I don't know what to pray for now. Or maybe I'm just scared that the answer will be No.

2005-03-20T20:20:00.000-06:00

For those interested in the Iowa City March of Dimes walk, Saturday, April 30, there is now a web page you can use to register for the University of Iowa Collegiate Council team, walking in Will's memory. Click on "Register to Walk" and you'll be prompted with instructions for the rest of the registration process.

My sister Ann also has web registration for Team Kenyon in the Chicago March of Dimes walk, Sunday, April 24. Click on "Register to Walk" and you'll be asked to specify whether you are walking with a team or as an individual. If you click the team button, the next page will ask for the team name. Enter "walk for will" and you'll get two results. You want "walk for will" not "william" so click that and you'll be taken to the registration page.

It's a lot more self explanatory when you're actually on the page.

Thanks to all our friends and family members who have already committed to joining us. We appreciate everyone's support.

2005-03-19T12:28:00.000-06:00

Will's cousin Sean was born this morning in Phoenix. It's very confusing for such a miraculous, joyful event to also bring such saddness. We'll watch Sean grow up and know that Will should be running along side him. With time I know it won't feel so raw, but I wonder if I'll ever stop thinking, "What if..."

2005-03-14T21:32:00.000-06:00

This blog started out as a way for us to keep family and friends updated on Will's life, but it quickly took on a life of its own as Will's story captured the hearts of so many people. We were all basically helpless to do anything for Will, but we have several opportunities this spring to help other babies and families who struggle with the effects of prematurity. We are planning to participate in two Iowa events organized to raise both awareness and money in the fight against prematurity and preeclampsia. We have felt the love and support of so many people throughout this experience and would love to have anyone who is interested join us in Iowa City for the March of Dimes Walk America on Saturday, April 30, and/or in Davenport for the first-annual Preeclampsia Foundation Walk-a-Thon on Saturday, May 7.

The University of Iowa Collegiate Council Team will walk in memory of Will in a six-mile hike through Iowa City as part of the nationwide annual event. If you're interested in joining us and the UI Collegiate Council, there will soon be a web page for registration. I'll post information here. Other walks are scheduled all over the country. If you can't make it to Iowa City, but are interested in supporting the cause, we encourage you to find out when and where your local walk will be held and sign up. My sister Ann is organizing a Will Kenyon family team for the walk in Chicago, Sunday, April 24. She invites anyone interested in that event to email her at sepersky@mac.com for information.

A few weeks ago I linked to a story about a woman who died from HELLP Syndrome at University Hospitals the same week that Will died. Her family's mission now is to raise awareness, hoping to prevent even one family from suffering the heartache that the loss of their daughter/mother/wife has brought them. As part of that effort they are participating in the first ever walk-a-thon sponsored by the Preeclampsia Foundation, which will be held in a number of cities around the country on May 7, the day before Mother's Day. The Iowa walk (a 5K) will be held in Davenport and they are asking people to register by March 31 so they'll know how big an event they're actually planning, but they will also accept registrations up to the day of the walk. I have the registration materials and will email them to anyone who is interested in joining us for this walk.

We weren't sure at first that we'd feel up to events like this so soon, but it feels like the right thing to do--a way to move forward carrying Will in our hearts.

2005-03-09T21:29:00.000-06:00

"How are you?" How many times a day do we ask and answer that question without even thinking about it? The answer of course is always, "Fine, and you?" It's still my first instinct when I hear the question, but if those words come out of my mouth I'm instantly struck by what a lie they are. I am not fine. And the contexts in which that question is most often asked are the ones in which I'm least prepared to think about how "not fine" I am. It's no one's fault. I do truly appreciate people expressing concern, checking in on me. It would be so much worse to be trapped in a zone of silence with everyone afraid to say anything for fear it might be the wrong thing.

But for some reason, those three words in that order send me on a downward spiral of despair more often than not. I've been thinking about this for a couple of weeks now, not wanting to share it until I came up with an alternative. But it's not really the question itself. A million different things trigger those thoughts and not always the same day-to-day. It's the first green shoots that will be daffodils and tulips popping up outside my door. It's a woman pushing a stroller. It's a meeting I wasn't supposed to attend because I was supposed to be on maternity leave. It's the simple act of washing my hands, a NICU constant. This is today. Tomorrow may bring something else and these won't be a trigger.

Maybe I need to adjust my own perception of "fine." Maybe it doesn't mean what it used to. The truth is, most days just getting out of bed is a major victory, so I suppose if I'm out encountering friends who ask how I'm doing, then on some level I am "fine." Not like I was before or during Will's life, but in a way that means I'm incorporating this whole experience into a new me who may never be "fine" the same way again.

2005-03-09T16:17:00.000-06:00

I never thought I'd read about pleural effusion in the news; then again, there was a time when I would not have even noticed that term. But now that President Clinton suffers from it, it's big news. Yes, it's pretty much the same thing that Will suffered, but the similarities end there. While Mr. Clinton will have surgery to take care of some scarring caused by his heart bypass surgery and deal with a chest tube to drain any lingering fluid in his chest cavity, it is routine enough that he's able to golf the day before surgery and doesn't seem to anticipate much of a setback.

Will, on the other hand, ultimately died because of his pleural effusion. He was kept off of food for so long that his systems began shutting down. The tiniest nick in his lymphatic duct during his own heart surgery led to weeks of fluid accumulation, and weeks of being fed nothing. His liver started to fail as a result and that was more than he could bear. I won't go so far as to say that if there had been no pleural effusion for Will that he'd still be with us. Any number of other things could have gone wrong for him -- or could have been working in tandem with the effusion to cause his problems. And yet, for the President, "It's no big deal."

I certainly don't begrudge him for the fact that he'll likely recover just fine from this and continue with an active life of service, but it just strikes me as patently unfair that a little guy like Will could succumb to such a problem while for others it is an inconvenience. That's the case for premature babies, even. Most, as I reported often here, see such effusions disappear on their own after a few days or more. Not Will. He always seemed to want to do things the hard way, as if he had a choice.

2005-03-08T14:33:00.000-06:00

No profound words of wisdom or great revelations here. It just seems like Will is everywhere today. I found photos of him on the hard drive of my computer at work that I didn't know were there. I needed the computer cable that I had kept in his room for months so I could do work from there on my laptop. Eric Zorn with the Chicago Tribune wrote to say that someone had sent him a card to forward to us. Even the imminent arrival of spring signaled by the clear blue sky outside reminds me that I had been hopeful that we'd be able to bring Will home in a few more weeks. And it's not just today. He's there with me (and with Mary, I know) every day. It is so bittersweet. I'm so glad to have had him in my life for that short time, knowing that it has made my life richer in ways both obvious and unknowable. But I miss him so much, and it hurts every time I think of a future without him.

2005-02-28T15:11:00.000-06:00

I went back to University Hospitals this morning for the first time since Will died. I was there to interview the CEO of the hospital, Donna Katen-Bahensky, for a feature story we’re doing about female leaders in our area. I could have assigned someone else to go, but forced myself to do it instead because I can’t exactly steer clear of the largest employer in the county for the rest of my life, and I needed to get back there before I fixated on it for too long and made it even more difficult.

That said, it was very difficult: same drive over there (though our photographer did the driving), same parking ramp, same part of the hospital... it felt so familiar and yet so foreign all at once. It was the same place, but yet not: Will was no longer there. I had walked by the CEOs office about 100 times during Will’s life, as it was between the pavilion which houses the NICU and the main part of the hospital where the cafeteria and, most importantly, coffee cart are located. Many days, particularly toward the end when we were practically living in Will’s room, I would walk back and forth to pick up a cup of coffee or a newspaper or a candy bar as a bit of sustenance to get through the day before heading back to check on my boy.

At one point this morning, leaving her office to go to another part of the floor where we would take her picture for the story, we walked right past Elevator I. Anyone who had the pleasure of meeting Will knows that was the one we used every day to get up to the sixth floor to see him. Instinctively, I wanted to walk over and push the button, wait forever for an elevator to finally come (though there were six there it never seemed like more than one or two was ever in service) and ride up to the NICU. Instead, I kept walking past, quickening my pace a bit and trying to initiate some conversation that would take my mind away from the physical reality of my location. Still, a big part of me wanted to take that ride, to go up and see that place again. I know Will isn’t there, but it was so much a part of our lives for so long that it feels very strange to have just turned our back on it that terrible early morning more than five weeks ago now, never to return.

I took the opportunity during the interview to tell Ms. Katen-Bahensky about Will and the tremendous care he received there during his life. People don’t often take the time to praise people who do good work, and I didn’t want the chance to pass. I started by telling her that I had a son born there in October. I didn’t pause long, however, because I could see the expected congratulatory smile start to form on her face. I told her that, despite the expert care of the NICU staff, Will didn’t make it. She asked about the circumstances, and then asked if Mary and I were getting the proper follow-up care, and I told her about how some of the nurses have kept in touch with us and that we had plenty of information about other things we can do if and when we’re ready.

And then we left. I shouldn’t be surprised how little had changed. Things that had been under construction then are still under construction now. The same people were working at the parking ramp booths as before. It was only five weeks ago, so recent, in fact, that we fully expected to be still going to the hospital every day to see Will; our big hope was that he finally would have been moved out of the part of the NICU reserved for the most critical cases and into the intermediate area. As I told Ms. Katen-Bahensky, this wasn’t the way I had envisioned my return to the hospital. Mary and I had talked about how much fun it would be to wheel a stroller into the NICU this fall to show off our baby boy, to watch as the nurses and doctors marveled at how much he had grown. No, this was not the way it was supposed to be.

2005-02-21T21:23:00.000-06:00

I have been stewing all day with a number of jumbled thoughts and trying to figure out how to organize them into a post. It would have been a crabby one, as it hasn't been the greatest day. Then I read something on a message board that changed my perspective, if only for a moment. I'll link to the article, but I don't know how long it will stay active. This links to a Quad City Times article about a 25-year-old woman who died from HELLP syndrome at University Hospitals January 16. Her baby lived, but she and Will were dying at the same time.

And so, for a little while anyway, instead of feeling crabby I feel lucky. I didn't fully understand it at the time, but it didn't take me too long after Will was born to realize just how sick I was and that I could have died. The whole week before he was born, I was at home feeling sick but thinking it was a weird, lingering stomach virus. The pain that woke me up every night, searing in my abdomen, was in fact my inflamed liver. By the time I was admitted to the hospital my blood pressure was skyrocketing and my kidneys were not functioning properly. My platelet count was so low that there was significant risk in using either general or spinal anesthetic for the C-section, though with medicines the level came up to a safer range before the surgery.

Everything returned to normal after they delivered Will. Everything, that is, inside my body. Everything else required a whole new definition of 'normal.' And it still does, but even in the darkest moments of my grief, I can be thankful that I lived to know Will.

2005-02-20T17:24:00.000-06:00

One coping mechanism for dealing with my grief has been to try to fill as much of my time as possible so that I'm left with few free moments during which I will surely think about Will. Not that I'm trying to forget him; there's no worry of that. But when left alone or without some sort of distraction, my thoughts inevitably turn toward wondering what might have been, what I'm missing out on because Will is no longer with us. A certain amount of that kind of thought is to be expected; encouraged to a certain extent, I'd guess. But too much at once tends to overwhelm me. So, I look for other things to occupy me.

I've long been an avid book lover and film goer, and have found myself eagerly diving back into both. Months ago, friends with kids warned me that those days were numbered. I might think there would be plenty of down time during which to watch a movie or read a book, but I would be mistaken. When Will arrived, the hectic schedule predicted by those friends would have been a delight in comparison to what we faced. Every spare moment, it seemed, should be spent with Will. So, the books went on the shelf and the movies went onto a list titled "see them when they come out on DVD." While Will was with us, I read four books, two about musicians that I had started and discarded for one reason or another before he was born and subsequently finished during those waning moments each night when I wasn't ready for sleep, and two that were short fiction collections that included material I'd previously read elsewhere.

Since Will died last month, I've read at least that many or more, with a book almost constantly at my side. The same goes for films. Mary saw none while Will was with us, while I watch one on video on a night when I was sick and Mary went to the hospital by herself to see Will. Since, we've seen several, knowing that two hours spent escaping to some other place in the dark is a good way to push painful thoughts aside for a while. But that hasn't been as effortless as one might imagine. We tried to be thorough from the start, reading reviews of films to make sure they wouldn't be too upsetting for us. Our first film was "Meet the Fockers;" more mindless escape could not be hoped for, right? Well, save for the opening scene of a woman giving birth, the subplot of Robert DeNiro's character caring for his daughter's baby while she is away (complete with a fake breast with which to breastfeed the tyke so he doesn't realize Mom is away) and another subplot about the main characters expecting a baby, sure, it was mindless entertainment. None of these things were explained in the reviews; why would they be? None were integral to the plot. We found the same thing in almost everything we've seen. "The Life Aquatic" features a pregnant woman reading to her baby, a big part of Ray Charles' motivation in "Ray" is based on the death of his younger brother.

These are just the films we deemed OK; we've actually steered clear of a few because we know they deal with childbirth, parenting or other topics we fear might hit too close to home. Mary's Mom pointed out that we'll deal with this kind of thing for a while. That is our frame of reference right now. If instead we were worried about references to a some other family tragedy, every film or book or TV show would seem to have that, too. Still, it has made us wonder if there ought not to be a service people could consult to find out if a film or book or other form of entertainment is OK for them depending on their sensibilities. Just lost your pet? You might not want to see "There's Something About Mary" with it's scene of a dog flying out the window, it might suggest.

Our world has changed, or at least the way we see it has. That is going to take some getting used to, and that is going to take a while.

2005-02-15T10:53:00.000-06:00

As I mentioned below, the focus of this blog has changed considerably. It has evolved from being a chronicle of the ups and downs of a premature baby to an accounting of the grief felt by his parents after losing him. As with almost everything having to do with Will, I have learned much about the grieving process. Yes, I have felt grief before with the death of a loved one or a friend, but nothing like this. Mary and I were talking about this last night -- Valentine's Day dinner conversation, as a matter of fact -- and I was trying to explain that I felt two different kinds of grief. Finally, after stumbling around it for a bit, I hit upon it. First is the day-to-day feeling of loss, that constant feeling of not having Will as a physical presence in my life any more. As painful as that is, I can deal with that. It's almost like a more concentrated version of what I felt every day when I was at work or the couple of times I was sick and couldn't make it in to the hospital to see him. I really wanted to be with him rather than where I was, but knew I could see him again soon.

The more difficult grief, then, is what follows. It is more long-term, the knowledge that I can't go see him soon. Not now, not ever. These really are two separate things for me. Right now I'm not with Will, and that hurts. But taking a moment to realize that it's always going to be like this, that I'll never see him again... that hurts almost beyond compare. Still, as I said below, in a strange way I embrace that, because to not feel that would seem to be losing him all over again.

The other thing I have learned from Will is patience. While driving to work today I was stopped at a light and pulled out my cell phone to check my work voice mail -- I wanted to see what awaited me when I arrived. As I was scrolling through to find the number, I saw many familiar numbers in my "recently called list." I haven't used the phone much the past three weeks, so most of the numbers were from calls made while Will was alive. I stopped on one that had been the number directly into Will's room and I was just paralyzed for a moment. Meanwhile, the light had turned green and a guy coming the other way and wanting to turn was gesturing angrily for me to get a move on. I wondered if he would be so impatient if he had known why I had paused; would he apologize and quietly move on? Probably. Why didn't he think about what I might be going through, I wondered. Why was this jerk in such a hurry? I began to think myself superior, because I was someone who was thinking about others, concerned about how my actions affected other people.

But I wasn't. Not really. Maybe this guy was in a hurry because he was himself trying to get to the hospital to see someone. I remembered one of Will's final days. We had spent the night with Will because he was not doing well, and I raced home at one point to take a quick shower and pick up some things for yet another night sleeping in Will's room. Everyone, it seemed, was conspiring to slow me down. The parking attendant didn't like my parking pass, so I had to go talk to someone at the parking office. There was a long line in that office when I arrived. Once I'd negotiated my way out of the ramp, it seemed everyone was content to drive several miles per hour below the speed limit. "My son is dying!" I shouted as I tried to weave in and out of traffic, wondering why people weren't more mindful of those in a hurry around them. Yet here I was this morning, a month later, feeling more enlightened but still really only thinking about my own problems.

So, maybe it is premature to say that Will taught me patience. He is teaching me patience. It is as if I have a new lens through which to look at life --there was before-Will and now, after-Will -- and I am continually amazed at what a difference that makes.

2005-02-13T19:45:00.001-06:00

It seems strange to have been away from this page for so long, but things have certainly changed in the past three weeks. Gone is the need for a daily update on Will's condition, replaced by the need to let people know how Mary and I are doing. To that end, we are doing OK, or, as I tell people who ask, as good as could be expected. No one should need to know how to deal with the loss of a child no matter the situation, and we really were not prepared for losing Will. That might seem strange to anyone looking in from the outside, because it is clear that a baby born at 24 weeks is going to face unbelievable hurdles even if everything goes well. But we always pushed those doubts and fears aside. They were there, but they were sublimated as we looked instead for the good things, hopeful signs that pointed toward Will getting better and coming home with us. No matter what obstacle was placed in front of him, we grew to feel that he would overcome it and move on. Somewhere inside of ourselves we knew the odds were against Will, but he continued to convince us otherwise.

It seems that was the case with his doctors as well. We never got the sense that they thought anything other than that he was going to make it, but talking with them at the memorial service put things into perspective. They talked about what a fighter he was, how strong he was and how he just kept recovering from every setback. It is clear now that they had their doubts about his chances at the outset -- premature boys just don't do as well as girls, and that coupled with his underdeveloped lungs and heart problems seemed to stack the deck against him -- but he seemed to convince them that he was strong enough to make it.

That he wasn't, that he finally encountered a set of circumstances that were too much for him to handle, was a shock. Even though he had gained so much fluid weight that he was all but unrecognizable in those final days, even though he just wasn't bouncing back like he had in the past, we felt he was going to come through. As Mary wrote, it wasn't until just hours before he died that we called our parents and told them they needed to come right away to say goodbye. We had that much faith in our little fighter.

That is what has made the past three weeks so difficult. In talking about the stages of grief, people mention denial as an initial step. But I continue to carry a mild form of that, improbable though that may seem. I know Will is gone, but I still find myself overcome at times with the feeling that if I just went over to the NICU I would find him there in his room, staring up at me with a look that says, "Where have you been?" I know he's not there, but something about his strength and his determination make that hard to accept.

Will wasn't supposed to arrive until Feb. 12, yesterday. We worried that we would be emotional wrecks on that day, wondering about what might have been. It was hard, but not so much for what the date represented than for all that happened before it. I was supposed to be sending out a note today letting friends and family know about the birth of our health baby boy. Instead, I'm writing this three weeks after he had already lived his entire life. Think about that: Will lived a life that touched so many people, died, and has been gone for three weeks and he was just now supposed to make his entrance. So, instead of looking forward to a lifetime of our being a family and doing father and son things, I'm left with memories and the assurance that he was here for a purpose.

Some day that might be enough. But for right now I am angry and frustrated and sad and would trade all of that impact, and all of the money raised for his memorial fund and all of the cards and letters and phone calls of support for just one more day with him; one more hour, even. But I can't have that. So I am left to hold close the memory of every wink of his eye, every grip of his hand and every time he responded to hearing a story. Those things, the support of family and friends, and the knowledge that Will's life made a difference in the lives of hundreds of people, will eventually overpower that anger, sadness and frustration. All will be there forever, but, much as we pushed out the doubts and simply believed in our Will, I'll be able to push away everything and focus on remembering my precious little boy.

2005-02-09T22:26:00.000-06:00

Today was a day of mixed emotions on several levels. I went back to work (John started back on Monday) and while it's good to be able to fill time with something other than staring at the clock or Will's pictures, it's hard to go back to a routine that existed before he was born. Adding insult to injury, I was supposed to be starting maternity leave this week or next (Will's original due date Feb. 12) not ending it.

I also faced an unexpected turn on the emotional roller coaster when I read in the paper that the smallest baby ever known to survive went home to her parents yesterday in Chicago. At 8.6 ounces, she was less than half Will's size when she and her twin sister were born at 24 weeks in September. There is not a single fiber of my being that wishes for anything other than her joyful homecoming, but at the same time it feels like a slap in the face. If babies really can survive such early entries into the world, then how is it that the toughest little 24-weeker ever to hit a NICU didn't make it? Why, when he fought so hard, when he had the best medical team available anywhere in the world, when we spent every waking moment there to support him in any way we could, why will he never come home with us?

I know there are no answers to these questions, but knowing that doesn't make it any easier. So many times when faced with a difficult or scary discussion or decision about Will's care we told the doctors that we understood what was needed but were fighting an internal battle between logic and emotion. It was heart vs. head, and we're pretty sure logic won every time. We know it certainly won the final tug of war. In our hearts we desperately wanted to hold on as long as we could, but our minds had learned enough in those three months to understand fully that there were no other options.

The end. We never shared the details of what happened that day. His turn-around from Thursday ended up being short lived. We now think it was his way of letting us replenish our reserves enough to get through the next few days. We slept at home for the first time that week on Thursday night. When I called and talked to Julie, Will's nurse, on Friday at 6 a.m. all was still well, but by the time we got there around 10 a.m., his blood pressure was much lower and he had stopped peeing. They adjusted his medicines all day trying to reverse course and even tried giving epinephrine at steadily increasing doses through the evening, but the pressure never went up. On Thursday maximum medical support gave him the upper hand on the infection, but on Friday the infection reared up for another round.

To many blog readers it probably seemed abrupt. It did to us too, until we went back and read through the last week's worth of entries. But in the moment, we truly believed he would break through yet again and send his vitals back into normal range. We believed it so much we didn’t call our parents to come to the hospital until 6 p.m., and by that time they all had to drive through a blinding snowstorm to get to us from Chicago and Des Moines. But they all made it here to say goodbye and for that we can be forever grateful. All four grandparents got to hold Will in their arms for the first and last time that night. John and I held him for the second time. Twice. We got to hold our son twice in his life. It seems rather monstrous, but there just weren't many times when he wasn’t fighting, and we never wanted to risk increasing his struggles just to satisfy our own longings.

So back to mixed emotions--the battle between heart and head. All logic and reason tells us that we must get up each day and go on with our lives, but emotion could keep us in a state of near-paralysis. We struggle for balance and some days are better than others. Will's life taught us to embrace both ends of the logic-emotion spectrum but to base important decisions on logic. That's a pretty good roadmap for us now.

2005-02-01T11:51:00.000-06:00

Thanks to the media coverage of Will's life, as well as the way the blogosphere has helped to spread Will's story, many people we have never met have contacted us to share their support. Many have read in Will's obituary about the memorial fund that we have established in his name and want to contribute. This is a very informal thing at this point, but already we have been overwhelmed at the response just from friends and family. Anyone who would like to contribute may do so by using the address at the top right side of this page.

We came up with the idea when thinking about the memorial service we held for Will last week. We didn't want a room full of flowers that would wilt and die, but rather wanted a longlasting way to honor Will's memory and to help others who are going through similar situations. So, we asked that people give a memorial in lieu of flowers. This spring, once we've had the chance to better deal with what happened, we plan to meet with Will's doctors to discuss his care and to try to find out more about why he didn't make it. At that time, we hope to talk with them about things related to Will's care that could benefit from more study or research, or the acquisition of equipment, for example. While we know that our fund will be modest when compared to the vast sums of grant money that usually funds such work, we know that every little bit can help, and plan to offer the total amount in the fund for that work. They may tell us that the best thing would be to use the money to buy blankets for swaddling the babies and books for parents to read to them. If so, that's what we'll do. Whatever we choose to do, I will share it here.

Though the postings will likely be less frequent, I still intend to keep this blog active. While Will is no longer with us physically, he is very much with us in spirit, and that will be something we will continue to deal with as we work through our grief. We've come this far baring our thoughts, hopes and feelings, and may as well keep going in the hope that this site and Will's life might continue to touch people.

2005-01-26T21:13:00.000-06:00

We had a memorial service for Will tonight, and were overwhelmed by the friends and family who attended. We were particularly moved by seeing so many of the people who cared for Will, who came to feel like members of our extended family during our three-month stay at the NICU.

Mary and I each read something during the service that expressed what Will meant to us:

I can't remember a time in my life when I didn't know that I wanted to be a mother. I watched my mom seamlessly manage the lives and needs of her children and knew I could do it too if I just followed her example. I had only an inkling of awareness of the depth of love I would feel for a child of my own, but even that small amount was enough to make me feel I would burst with happiness the day I learned that John and I would become parents.

As with most things in my life, I made meticulous plans about how we would prepare for his arrival and what we'd do once he was here. I signed up for childbirth, parenting, and breastfeeding classes. I read all I could about cribs, car seats, and strollers. I planted tulips and daffodils that would come up just as we were ready to venture out after spending a few weeks inside getting used to each other.

Will's early arrival turned all my plans on end and forced me to focus on each single day. No planning. No long views. Just each day, each hour, sometimes each minute. I never had any idea what was coming next and had to brace myself for each new emotion as it washed over me. Joy. Pain. Fear. Anxiety. Impatience. Confusion. Triumph. Defeat. Love. Love. Love. Will gave me the gift of time. The only thing that mattered during those 12 weeks and four days was how many hours I could spend at his bedside before collapsing into sleep in my own bed back home.

Will taught me to be a mother in ways I never imagined. Instead of a diaper genie, we had a diaper scale to keep careful track of every cc. Instead of him falling asleep in my arms, I passed out at his bedside the first night I was allowed to see him. Instead of listening for his cry, I had to watch closely. There was no sound, but I soon learned how to tell when he needed me and when he needed someone more expert. I knew to draw his flailing arms close to his body, bringing his hands to his face. I knew not to touch his sore little feet, but to place a finger close and let him push if he wanted that contact. I knew how comfortable he was on his tummy with his little knees tucked up under him and one hand on his cheek.

And I knew in the end that he just didn't have anything left for the fight. So many times John and I told him that if there was anything we could do to take away his pain we would. We didn't know, or chose not to think about what that promise really meant. I held him as he slipped away, knowing that in place of his pain would be ours forever. And that was the only thing I could do for him as his mother.

I still long to be a mother, but again, I must find my own path as a mother without a baby. I hold the memories of his tiny, perfect hands squeezing my finger; his eyes straining to reopen after being swollen shut for weeks; his chest rising and falling as he learned to breath through the ventilator; his blonde eyebrows, so like John's, barely visible against his forehead; the surprising weight of his tiny body in my arms, once while he lived and once while he died. All those things make me an invisible mother. I haven't spent a lifetime learning how to do this, but now I have the rest of my life to figure it out.

Goodnight sweetie. Mom and Dad love you very much.

--Mary

One of the first things the staff at the hospital had us do after they admitted Will as a patient was to have us fill out a form that asked many odd questions. Do you have running water in your home? Do you have reliable transportation to and from the hospital? How do you best learn information? We could confidently answer "yes" to those first two, but the third was a puzzler. How do we best learn? It offered suggestions, such as "reading," "hearing something explained" or "doing." Neither of us is overly handy, so we thought at the time that the first two might best apply depending on the situation.

Before Will was born, Mary would dutifully read through the "What to Expect When You're Expecting" books, getting ready to be a mother. For some reason, fatherhood was more abstract for me. I needed the baby in front of me before I could really concentrate on what it would mean to be a Dad. I tried to read the books, but without my baby there to reference, it was hard to grasp. Once Will arrived, however, I had to read everything I could get my hands on. I had to know everything about him, what made him tick, what he needed, and what to expect as he grew. "The average premature infant has little strength for moving arms and legs about," I would read. Ha! I would think. Will's got an iron grip already.

We also spent a lot of time discussing Will's care with his doctors and nurses. It helped to have the blog. We're both writers, and as such we know we grasp something when we can turn and explain it to someone else. In that way, we knew as much about Will's care and condition as anyone, and that deep understanding really allowed us to help him in ways that had never crossed our minds when we thought of what being a parent would entail. Never could we have dreamt that it meant telling nurses to put an IV far enough up his wrist so that he could still get a hand up to his face to comfort himself, or to give him a boost of oxygen before an unpleasant task like having a diaper changed, or to make sure they gave him the correct dose of the sedative that helped him through painful times.

At one point during all this, a former co-worker wrote an e-mail to say that she was having a hard time reconciling my warm, almost mushy blog posts with the reserved, cynical person she thought she knew. "Maybe I didn't know you as well as you thought I did," she wrote. "Or maybe," I replied, "I didn't know myself as well as I thought I did."

And I think that is perhaps the ultimate thing I learned from Will. Not only did I want to be a Dad, I wanted to be Will's Dad, and that meant opening myself up to feel things I never thought possible. How did I learn that? The entire time, I thought I was learning by reading as much as possible and discussing things with everyone I could find. What I know now is that I was really learning by doing. I was changing Will's diaper, getting so excited at seeing pee there that it was all I could do to keep from dancing. I was offering him a finger to grab to help him get through some painful procedure. I was doing what it took to be his Dad, and through that I learned the greatest thing of all.

--John

2005-01-23T23:33:00.000-06:00

William Albert "Will" Kenyon, infant son of Mary and John Kenyon of Iowa City, died Saturday, January 22, 2005, at the University of Iowa Hospitals and Clinics from complications of premature birth.

Will was born October 26, 2004 at 24 weeks gestation. He weighed 522 grams at birth, slightly more than one pound. He spent his 12 weeks and four days of life in the Neonatal Intensive Care Unit at the Children's Hospital of Iowa under the expert and loving care of a dedicated team of doctors, nurses, and therapists.

Will was a strong fighter, fending off numerous challenges. He liked to hold his hands next to his face and chin. He was most comfortable lying on his tummy. He had a strong grip when offered a finger to hold. A parental hand cupping the top of his head kept him calm and comfortable. Sometimes he tapped his feet as if hearing music in his head. He was soothed listening to a lullaby CD and hearing his parents read stories, especially Goodnight Moon, Two Little Trains, and Jamberry.

In addition to his parents he is survived by his grandparents, Bill and Holly Kenyon of Des Moines, Iowa, and Martin and Maureen Geraghty of Evanston, Ill; great grandparents Jesse and Margaret Askren of Chariton, Iowa, and Mary Regina Ganey of Chicago, Ill.; and numerous aunts, uncles, and cousins. Will was also loved and cherished by hundreds of friends, family and strangers near and far who followed the story of his life as chronicled lovingly each day by his father at willkenyon.blogspot.com.

The family will greet friends from 5:30 to 8 p.m. Wednesday, January 26, at Gay & Ciha Funeral and Cremation Service, 2720 Muscatine Ave. in Iowa City. In lieu of flowers memorial donations may be made in Will's memory to the William A. Kenyon Memorial Fund. The fund will support other babies who face struggles as Will did in his short life.

Will demonstrated each day the value and fragility of life, and we are thankful for every moment we spent with him. Parents hug their children a little harder because of Will. We will hold him in our hearts forever.

2005-01-22T04:24:00.000-06:00

We lost Will tonight. He fought so hard for so long, but in the end there was just too much to fight. We love him so much and are heartbroken. We will miss him.

William Albert Kenyon
Oct. 26, 2004 - Jan. 22, 2005

2005-01-21T19:35:00.000-06:00

Will's condition has deteriorated rapidly today. Please pray.

2005-01-21T15:40:00.000-06:00

Once again, we're not sure what to make of Will. After doing well enough all night that we did decide to go home and get some sleep -- they were able to turn down the settings on his ventilator and he continued to pee -- he started to deteriorate this morning. First he stopped peeing around dawn as his blood pressures started falling off, then, around noon, he started needing more oxygen and was having trouble with a fluctuating heart rate. They've since gone up on the ventilator a bit again, have increased some of the medicines for his blood pressure that they had weaned, and did a scan of his heart to see if it is beating efficiently. If not, they can change some of the medicines or dosages they're giving him to help with that. So, while we're happy that he seemed to be doing better with breathing, it is distressing that his urine output and blood pressure are off again. It feels much like it did on Wednesday as we waited for his blood pressure to come up and for him to start peeing. They have said that as he fights the infection, dying bacteria will burst and the toxins that are released can cause further problems. So, while he may be getting the upper hand on the infection, it's not going to go quietly. He needs to stay strong through this so he can continue to fight this off until it's finally licked. Each time it feels like he has turned the corner, we find there is another one right after it.

2005-01-20T18:11:00.000-06:00

Just a quick note to say that Will continues to do well this evening. He was doing well enough this afternoon that Mary and I finally went home for a short while to clean up and recharge. When we returned just now, his nurse practically ran up to tell us how well he'd done this afternoon. He continues to pee (she told us that between 4 p.m. and now he had more come out than go in, for example, which is just what he needs), is breathing well on the new ventilator and seems to be more comfortable. They also had ultrasounds taken of his abdomen and head, just to make sure there was nothing causing this downturn beyond the infection. Both scans found nothing wrong. So, he's still very critical, but doing so much better than he was yesterday. It feels like a tremendous weight has been lifted. I don't know if that will allow us to feel good enough that we'll go home to sleep tonight, but it is at least crossing our minds, something that would have seemed unthinkable 24 hours ago. This kid is so strong that I really can't wait to get to know him better. Now I'm more confident that I'm going to get that chance.

2005-01-20T08:43:00.000-06:00

Will's doctor just came in this morning to check on him and said that she has taken care of many other babies that probably would have given up when faced with what Will is facing. Not Will. He faced it down, at least for now, and had a good night. He finally started peeing around 11 and hasn't stopped since. They have him down to needing 70 percent oxygen instead of 100 percent. Neither might sound like a big deal, but both are great news. If he keeps peeing, he can get some of this fluid off and get on the mend, and if he continues to tolerate this new ventilator it can keep him in a better place while he fights off this infection.

He's far from being out of the woods, but last night's progress was a huge step in the right direction. Beyond the emotional lift that this gave Mary and me last night, you can tell that the doctors and nurses are a bit more confident today. They know that Will responds. It's all relative, of course. He is probably just as sick as he was Tuesday, which was as sick as he had been until Wednesday, but we're hoping that yesterday was the bottom and that he's fighting his way back to the top. Today will be just as important as last night in that regard. Progress is great, but he must sustain it.

Thanks to everyone for the support. We know it helps. Dr. Colaizy said that Will obviously has deep reserves that are getting him through this. We all know how tough he is, but know too that the army of support behind him is giving him an extra little push. Three of his former attending doctors even pitched in yesterday. It was like a reunion. Dr. Klein talked with us about the new ventilator, Dr. Dagle helped out in numerous ways, and Dr. Segar (who was Will's attending for his first five days) put in the arterial line last night.

"He's going to be an interesting little boy," Dr. Colaizy said. We couldn't agree more, except to say "he is an interesting -- and wonderfully strong -- little boy."

2005-01-19T19:44:00.000-06:00

I've been thinking all day about how to write this post and haven't really come up with anything, so this is going to be pretty stream-of-consciousness. Will is having what I would guess is his toughest day today, and is headed into what might be his toughest night. There isn't much going right in his world today, and it is taking its toll. They gave us quite a list of problems when the doctors discussed Will's condition with us today: The infection is causing problems in several areas, his kidneys aren't working great, his liver function is worsening and his lungs, as always, are not in good shape. He continues to take on fluid, and the results have left him largely unreconizable. His face is so puffy that he scarcely looks like the Will of just a week ago, let alone a month ago when he was doing OK. It's so hard to see him like this, because he's obviously uncomfortable and in pain, with no sign of it letting up soon.

They continue to change his treatment to address all of these concerns. They put him on a more powerful ventilator today that will do a better job of expanding his lungs in the face of the large amount of fluid pressing down from all sides. They add and increase medicines at a rate that makes it difficult for us to keep up in the hope of helping his lungs, increasing his blood pressure, helping his urine production and reversing some of the liver damage. The ventilator change is the most significant today; it should at least make breathing easier for him as he fights this. Another couple of changes should help him, too. They inserted a catheter into his bladder to get the urine out even when he doesn't feel like peeing. It hasn't gotten much, so for some reason he just isn't making much. He really needs to, because there's no other way for him to get rid of all this fluid. They also put an IV in an artery in his arm so they can draw blood samples from that and also get better blood pressure readings. Both things have been compromised by all of the fluid he is carrying, and now they'll be able to get more accurate readings that will help them to more specifically address his needs.

I have constantly written here about how tough Will is. No one who has stuck by us through this would doubt that for a second. I only hope that he continues to be tough enough to pull through this. Though the doctors say they have other options for helping him, much of this is up to him right now. His systems must respond to the treatments, and he must continue to have the strength to fight off this infection and to stay stable while things improve. That won't be easy. Mary and I will spend our third night in a row here at the hospital, because we just can't bring ourselves to leave his side. Somewhere down in there, I hope he senses that. We're running on fumes ourselves, but need to somehow find a way to continue to be strong, too, for him.

We appreciate how much everyone has been there for us through all of this and how much everyone has done. Tonight, and for these next few days, please do whatever you do to lift someone up and ask for help for them, and do it for Will. Pray, think good thoughts, light a candle... whatever it is will help. The doctors have said that Will has made it over hurdles already that other babies might not have conquered, so we hope that he continues to find that strength and get through this, too.

2005-01-18T13:31:00.000-06:00

Will's condition is taking its toll on all three of us today. Will is doing better, but has had a rough 36-48 hours thanks to an infection, his edema and the fact that even at his healthiest he has sick, immature lungs. Mary is home with a stomach bug, tired and not feeling well, and I'm in the best shape, simply exhausted having stayed up all night to keep an eye on Will. Mary seems to be feeling better, there's nothing wrong with me a good long nap won't fix and Will is very slowly coming around.

Will's main issues the past couple of days have been a low blood pressure, no peeing and the need for significantly increased ventilator support. All of this can be attributed at least in part to an infection that seems to have settled in as pneumonia. Meanwhile, he continues to take on fluid and hasn't been peeing it off, so he is incredibly puffy and very uncomfortable. Every movement seems to make him miserable, so he is on morphine and a sedative that help to keep him calm. To fight the infection -- there could be more than one, actually -- he is now on six different antibiotics. That way he has pretty serious blanket coverage that should knock out whatever he has. They also have started him again on the dexamethasone, a steroid that in the past has really helped his lungs because it can reduce inflammation and open the airways. He is on two medicines designed to increase his blood pressure, a diuretic and the usual slate of medicines that just help him to get through each day.

Yesterday he was OK, but by evening he was needing a lot of ventilator support and just wasn't doing well. They made some changes that stabilized him, but after a decent night, he had some trouble again around dawn, so they increased his ventilator support again. That seemed to help, and now he is requiring less oxygen than before (though still considerably more than he does when healthier). His blood pressure has improved and that, coupled with the diuretics finally led to some pee. It wasn't much, and it hasn't happened again since that small burst at about 9 this morning, but it was more than he'd had in the previous 24 hours, so it was a good sign. He needs to do that a lot more to get rid of his excess fluid. He's locked into another of those vicious cycles: His lungs aren't filling well because of the fluid, so the blood return to his heart isn't as efficient, so that blood isn't getting to his kidneys, so he isn't peeing, so the fluid doesn't go away, and so on and so forth. If they can get him peeing better, they can break that cycle and put him back on the path to recovery.

There still is good news. The chylothorax output has plateaued, if not decreased, and they continue to wean the octreotide. I'm still skeptical, but he so desperately needs to get hurdles out of the way that I'm willing to suspend disbelief and just hope that they're right. One less thing to deal with.

2005-01-17T11:58:00.000-06:00

Will is doing a bit better today; he needs less oxygen than he did last night and his blood pressures have been better. Neither is going to get him a gold star for the day, but progress is nice. The good news, though I'm highly skeptical of it, is that the doctors think his chylothorax has pretty much resolved itself. I find that hard to believe when the output seems to have been increasing, not decreasing, over the past few days, but they're the ones with 14+ years of medical experience as opposed to my 83-day intensive course, so I'll defer to them for now. They're going to wean him off the octreotide in the next 24 hours and then watch to see if the effusion increases. I absolutely want to remain positive about this and I certainly hope they're right, but after watching them restart his hydrocortisone and nitric oxide, and watching them increase his dopamine last night to what it had been on Friday before they weaned it Saturday, I'm going to need to see sustained proof before I'm convinced.

The strangest thing is Will's weight. We were here until 2:30 last night, so we were able to see many of the things that normally transpire while we're home asleep. We've helped to weigh him before, but this was strange. While I lifted him off the bed, his nurse gathered up all of the things attached to him and then zeroed out the bed (they do this, then set him back down so that he's the only new element to be weighed. It's the only way to weigh a kid with medicine pumps, chest tubes, IVs and other things in his bed with him at all times). Each time I would set him down, his weight would register somewhere between 2100 and 2300 grams. That's up from 1871 yesterday. They settled on 2300 some odd grams, which means according to their calculations he put on about 400 grams yesterday. Remember, a pound is 453 grams and he dipped below that in his first week briefly, so you can see it's quite an amazing weight gain. Though he looks miserably puffy (his skin is stretched so tight in places that it is shiny), he doesn't look that puffy. Regardless, he really needs to get that fluid off. It's no wonder he's having trouble getting his lungs to inflate when he has that much fluid around them. So, they're limiting his intake today, continuing to give him diuretics and hoping that he'll start peeing good again.

Sound familiar? Save for the change in his chylothorax, this probably sounds exactly like what I wrote last Monday. I'd check myself, but it's too depressing. We just need to hope that they're right about the chylothorax and that the antibiotics they're giving him will knock out whatever it is now that has him against the ropes. Otherwise, Will's to-do list today is short once again: breathe and pee. The doctors will take care of the rest.

2005-01-16T14:48:00.000-06:00

There is a real sense of deja vu with Will's condition today. Every one of the ways one would use to describe him -- puffy, needing more oxygen, still dealing with the chylothorax, not peeing so great, decent blood pressure, etc. -- has been used several different times over the course of his 82-day stay here to describe previous days. Maybe, though it's such a blur that I'm not sure anymore, they've been used all together to describe a day exactly like this one. He's not doing bad, not doing great, just... doing.

It is frustrating, because each of the few times we've felt like he was making real progress, it has lasted for only a few days before something rose up to drop him back where he had been before the move ahead. This time it seems to have been an infection, and again, we have been here before. So, he is sedated to the point where he hasn't moved since we arrived around 10 a.m., is on higher ventilator support and has a bit more output from his chest tube. He is almost as puffy as he was before losing all that weight last week, and save for the fact that the output from his chylothorax is about a quarter of what it was this time last week despite today's increase, doesn't seem to be doing much better than he was then.

We know this is what we're in for over the next several weeks or more, and most of the time we can deal with that. But seeing yet another good stretch negated just takes so much mental energy that we sometimes find it hard to muster it. Throughout this whole adventure, Mary and I have found that one of us is usually able to deal with things OK on any given day while the other is usually hit pretty hard by it. We've been able to prop each other up thus far, and I cringe to think of what the day will be like when we're both having trouble. If history holds, Will is going to rebound just fine from this infection and get ready for the next hurdle. That small move forward is usually enough to pull us out of the funk that his lack of progress puts us in. As another tough weekend comes to a close, we hope the coming week holds such a recovery. We feel like we need to be strong so that we can support Will, even if we do so sometimes with little more than good thoughts. But sometimes it is Will who, through his strength, helps us, picking up our spirits with the slightest good signs as we prepare for what is yet to come.

2005-01-15T17:37:00.000-06:00

Maybe there is something about the weekend that Will just doesn't like. He can be cruising along and then Friday hits and... trouble. Today we're left waiting to learn the reasons behind this latest downturn. The good news is that his blood pressure is back to normal. They increased his dopamine and restarted hydrocortisone, both of which help with that and seem to have done the trick. They had weaned him from the hydrocortisone last week, but they are finding, as with the nitric oxide which also was restarted this week, that Will sometimes needs to be eased off of things very, very slowly.

Today he was needing more oxygen, which may be a sign that he does indeed have an infection. While they sort that out, he'll continue to go without food again. The fluid around his left lung isn't recollecting in the pleural space, though it is still coming out through the tube. That means it's still leaking, obviously, but that at least it isn't compromising his breathing.

So, while he's not doing great today, he's OK, and was doing better as the day progressed. We've been here before, several times, and need to remind ourselves that it seems like each step forward is followed by a short step back that takes a couple of days to resolve. They say that slow and steady wins the race, and this clearly is a marathon.

2005-01-14T22:47:00.000-06:00

So much for stability. Will dealt with blood pressure troubles all day, which meant a day of many different potential fixes. By the time we left tonight, things seemed to be headed in the right direction.

It's no surprise that he'd be dealing with this, as it has happened before when he loses a lot of weight by peeing off excess fluid. That tends to drop his vascular pressures and hence his blood pressure. To be safe, they started him on antibiotics and took blood and urine cultures because an infection could also be the culprit. Then again, increasing his dopamine and giving him some IV fluids, which they did, can also get him back on track. They stopped his feeds again because they don't want to introduce anything new for him to work on if he does have an infection. If initial tests don't point to an infection, they could restart the feeds as soon as Saturday morning. We'll see. He was still tolerating them well, which is a good sign.

Add to all that the fact that he had another eye exam today, and it was a bit of a rough one for Will all told. None of the babies like that exam, from what we're told, and I can't say I blame them. The ophthalmologist pries open his eyes after the nurses already have done so to put in dilating drops, and takes a look to see if he can detect any problems. So far, Will's eyes have been OK, but really too immature to see much of anything anyway. They're going to start doing the exams weekly rather than every other week, so that must mean they're getting to the point where they think they can see more.

Even though he had some setbacks, they seemed minor overall. His chylothorax continues to be a trickle, and his x-rays have been good. They've gone down on his ventilator pressures again, and he seems to be breathing pretty well. He won't lose any weight today because his output has slowed quite a bit and they gave him fluid for his blood pressure, but he shouldn't be up much either. We hope this is just a plateau as they catch up with the significant changes he has undergone this week, and that he can start making progress again soon.

2005-01-14T13:39:00.000-06:00

A welcome to those checking out Will's blog thanks to a link put up today by Chicago Tribune columnist Eric Zorn on his blog at the Tribune site. You've discovered us at a pretty stable time for Will, and I won't apologize for the lack of drama in recent posts. Will has seen enough of that already, and he's only 11 weeks into his life and still more than four weeks away from his original due date. What you'll find here is a chronicle of the ups and downs of one premature baby getting some of the best care available as he deals with more than his fair share of troubles. You'll learn more than you ever wanted to know about chylothorax, patent ductus arteriosis, brochopulmonary displaysia, ventricular septal defects and the other hurdles placed before our son. The best place to start, if you're interested, is at the beginning, which seems like a lifetime ago. Come to think of it, for Will, that's exactly what it is.

2005-01-14T11:04:00.000-06:00

Another fairly boring post, which is just the way we like it -- rather that than to be remarkable in "let's add this to our textbooks" sort of ways. Will seems to be tolerating the breastmilk OK; three feeds (with another coming at noon) with no sign that he isn't liking it. The chylothorax continues at its slowed pace, and his doctor said that if it continues at such a slow rate and he does OK with his feeds, they'll increase the amount of milk he gets a bit over the next few days. He has slowed down in the diaper-filling department, so they're going to restart the diuretic. As a result of that slow-down, he gained weight again today, but only a few grams. So, a few small changes in an otherwise good, stable day. We'll take many more of those, please.

2005-01-13T22:43:00.000-06:00

So far, so good. They checked Will's stomach at 8 p.m. and it seems he already has digested what they gave him at 6 p.m. As long as it doesn't show up in the chylothorax, he's in good shape. Otherwise, things are pretty much status quo. He's breathing well, seems pretty comfortable and is doing good. His blood pressures were a bit low tonight, but that might be because he's lost so much fluid over the past 48 hours that he's getting a bit dehydrated vascularly. Not a surprise, and something they can counteract fairly easily.

I don't have much more to add about restarting his feed, actually. They'll just keep a real close eye on what comes out through the chest tube, and if it looks like anything from the breastmilk is making its way there, they'll stop the feeds again. It's good to see that after more than a month of not getting anything, however, that his digestive system seems to have picked up where it left off.

2005-01-13T16:06:00.000-06:00

OK, I know this runs counter to everything I've written here the past few weeks, but Mary just called with big news in Will's world: He's going to eat again. Today. Breastmilk.

With the effusion pretty much dried up around his lung, they think it's OK to start feeding him a little bit. Not only that, but they're going to start with breastmilk rather than Portagen, as previously thought. The main reason for starting the feeds is because his liver isn't functioning the way they would like. That's a not-unexpected side effect of not having eaten for the past month. They can give him medicine to kickstart those functions, but the one they really want to give him can't be given unless he has something in his stomach. So, it sounds like they'll start him out on 2cc of breastmilk every six hours, and will see how he deals with it. If he's OK with that (meaning both that his digestive system kicks into gear after being on hold for a month and that the milk doesn't cause his pleural effusion to restart), then they'll perhaps progress a bit in the quantity and frequency of his feeds and start some of the medicine that will help get his liver function back on track. They think breastmilk will be OK because it doesn't have many more of the long-chain fats than the Portagen, and with the chest tube in they will be able to tell immediately if it is causing a problem. I apologize if this sounds a bit vague, but I'll be able to flesh this out a bit once we get a chance to talk more with the doctors.

And to think I had been remiss in posting today because I was sure people would tire of the ceaseless fawning over my incredibly shrinking son! On that note, he lost another 35 grams today, with not-so-dramatic results in terms of his appearance. He continues to be stable in terms of his breathing and everything else, which puts him on the way toward having one of his longer good stretches to date.

2005-01-12T22:25:00.000-06:00

Will continues to do really well tonight. He had a record-setting 52cc diaper this afternoon (that's Will's own personal record book, of course) and has had more going out than coming in again today, so he should be down in weight again tomorrow. He also opened his eyes today for the first time since Christmas. That's longer -- 18 days -- than he had his eyes closed after birth, which was only 9 days. It was great to see him look around again. He did so tentatively, which was no surprise. Having the peepers exposed to light and air again after two-and-a-half weeks must be quite a shock.

The effusion continues to be little more than a trickle, with only 7cc out in the past 24 hours compared to the 40cc every 12 hours he had been losing. They seem to think that increasing the nitric oxide to the levels it had been at last week should get the credit for the improvement. They've again started talking about feeding him, though that will still be a few days off under the best scenario. That's great, because he's going to seem awfully small again once he loses all of this fluid, and it will be good to get that turned around and have him bulk up the right way.

2005-01-12T11:44:00.000-06:00

I never thought that I would cheer for Will to be smaller on one day than the next given the fact that he started out about as small as you can get, but I was very happy today to see him noticeably smaller than yesterday. He dropped an amazing 125 grams, and it clearly shows. His hands and feet are no longer puffy, and he just seems a bit smaller all around. He still could stand to lose a few hundred more grams over the next several days, but this is a great start. He just seemed more content, too, moving a bit more and just generally seeming more like himself. They've been able to continue weaning his ventilator settings a bit, which means it is taking less support to help him breathe.

Additional good news comes in looking at the pleural effusion, which is barely a trickle today. We're not sure why this has dried up so much again, but don't want to question it too much. His x-rays still look great, so it's not a case of the fluid building up and not being pulled out by the suction.

So, overall things are about as good as they have been in a while. He definitely deserves a few easy days after what he's been through the past few weeks.

2005-01-11T15:05:00.000-06:00

For now, the chest tube seems to have been a good idea. Will was stable all night, and his oxygen needs barely fluctuated in the past 24 hours, and they have been able to decrease his ventilator setting significantly as well. It seems that getting the fluid out of there was the right call, now they need to find a way to stop the flow all together. To that end, they increased the octreotide dose today, and hope that this might ease things a bit. He is losing less -- they took off more than 70cc of fluid in the past 24 hours (as of about 11 this morning) but only 8cc in the last eight hours of that day. Maybe the nitric oxide increase helped.

A physical therapist visited this morning and showed me a few things I can do to help Will with his range of motion. They are little things like helping him to bend and flex his arms and legs. The therapist also is working on other things that require a bit more skill that should help Will to feel better and be more active once get slims down again. We don't get many opportunities to do hands-on parenting, so I welcomed the chance to help him out. Mary and I will be able to do this for him a couple of times a day now.

And what would an update be without a little input about Will's output? Let's just say that he had some spectacular diapers overnight and into today, and that should help him to slim down. He did gain again today, but only 12 grams, so it seems like they're getting him turned around and headed in the right direction.

2005-01-10T21:42:00.000-06:00

If ever there was a night for an ice storm that is keeping us away from the hospital, this is it. We tried to head out tonight, but there is a thickening layer of ice over everything, and we thought it best not to take a risky trip the hospital that might end with both of us as inpatients rather than just visitors. So it was a big relief when we called Will's nurse to find out how he was doing and for her to say he was having a great night. All of his stats are fantastic from the sound of things. The chest tube really seems to be making a big difference. They normally need to turn his oxygen up bit when they do his "cares," things like changing his diaper, taking his temperature, suctioning out his breathing tube, etc., but tonight he kept his oxygenation levels high throughout without a change. It was a difficult decision for the doctors to make, but after a few hours, it sure seems like the right one.

Not being able to see Will in person, I took a look back through the blog to see how far we've come. We've had a bit of the naivete smacked out of us along the way, and really learned to open ourselves up for tremendous mood swings, but we've also had the chance to spend an lot of time with an amazing little guy. Seeing the pictures as I scrolled by made me want to see them all in one place, so I created a separate post that has all of the thumbnails I've posted here over the past 11 weeks. I cheated and put it at the very beginning, but you can get to it here or by the link off to the right. Someone with better html skills could probably make a pretty snazzy page out of this, but it does the job. You get to see him go from a scrawny little thing to the wide-eyed charmer he was at Christmas. Seeing us hold him, and seeing his eyes for that matter, is hard. But we're hoping these treatment changes will hasten the time when we get to do both again. And down the road, given enough time, we'll be able to snuggle up with him here at home on a night like this and marvel at how far we've come.

2005-01-10T16:20:00.000-06:00

You might want to get a beverage - this is going to take a while.

Will is the proud new owner of a pigtail chest tube. After needing to be tapped for the third time in 36 hours, it was clear that the chylothorax was getting worse and that something needed to be done to keep that area drained. So, after a few weeks of debate among members of the neonatology staff and many conversations with us, they decided to put one in. Will was tough as always, dealing with it just fine. It seems to be doing the trick. They've been taking about 40-45cc out of that area with each recent tap, and about that same amount came out again as they were putting in the tube.

The "pigtail" aspect of the tube is an accurate description of the end that is inside his pleural cavity. It is a small, soft rubber tube with about an inch or an inch-and-a-half that coils at the end. The coiled end has many small holes in it through which fluid can be pulled. It's sort of like the reverse of one of those watering hoses that has all the holes along it to better distribute water on your lawn. With Will, the holes will allow fluid to be pulled from a larger area rather than just through the end of the tube. The tube is hooked up to light suction which will pull the fluid out continuously, so Will won't need to wait for the fluid to build up enough to compromise his lungs before it is taken off.

And he does do better with the fluid gone. Last night his x-ray looked bad, with the left lung not showing much sign of working at all. After they tapped him, the x-ray looked great, the lung was as full as the right one and working well. The doctor who did the tap last night said Will responded immediately; Will's oxygenation was climbing steadily as he drew off the fluid, and he needed less and less support because his lung was filling with air at the same rate the fluid was coming off, it seemed. The fluid isn't in the lung, just around it, putting pressure on it and collapsing it down.

It might seem to be a no-brainer to put the tube in and keep him from being compromised, but it was definitely a matter of weighing risks and benefits. On the plus side, it is in once and requires no further needle sticks. It will keep the area continuously drained. On the other side of things, however, it has a higher risk of infection because he now has a foreign body sticking out of his side, it is said by small children who have them to be fairly uncomfortable on an almost constant basis and might clog and need to replaced. But the needle sticks Will was getting with increasing frequency were no picnic either, and each stick carried its own small chance of infection as well. We hope this was the right move. It seems so right now, and now we hope that having that pressure off his lung and heart (which gets pushed on by the displaced lung) will help his blood flow, which should help to keep the fluid in his capillaries and out of his tissues and thereby help to decrease the edema that has him so puffy.

They've also decided to increase his nitric oxide again. He had been getting that to combat pulmonary hypertension. The last check found that he no longer had that, so they have been weaning it down. But they took a hard look at his status over the past week or so, and found that last Tuesday was his best day in a long while. That was the point at which we thought the chylothrax was drying up. So, they have decided to try to get his various medicines and settings back close to where they were that day in the hope of getting him back to that good place. His nitric oxide was still high at that point, so they're bringing it back.

That and the chest tube were today's big things. Tomorrow might bring an increase in the octreotide or something else. Dr. Colaizy seems to want to limit the big things that they do to Will each day so that he can reasonably recover each time before they start in again. That seems like a good plan, and so far he is responding. Yesterday's big things involved tapping him more frequently and increasing his dopamine. That was to keep his oxygen needs more consistent and to help him pee off some of the fluid. It worked on both counts, particularly the latter. He had more in one diaper overnight last night than he'd had in the previous 36 hours (42cc for those of you keeping score at home). He continues to do well on that today. The result is that he only gained 6 grams of weight between yesterday and today. That's a move in the right direction considering his gains over the past week or so have been between 50 and 100 grams each day.

None of this is going to happen overnight. Even with fantastic diaper filling and a turnaround on the way his capillaries are holding fluid, it will take considerable time for him to get back to his fighting weight. They estimate that he has as much as 600cc of extra fluid on him, so that's a lot of 42cc diapers. And he continues to take in fluid, of course, in the form of nutrition, medicine and blood transfusions. It seems like they're on the right course, but we must be patient. Same thing goes for the chylothorax. The chest tube will keep the area relatively empty, but that has little to no effect on the effusion itself. For that, we must hope the octreotide works, that bringing the nitric oxide back online will help, that it will just dry up on its own or some combination of all three of those things. Such patience isn't easy, and we're not the ones so swollen with fluid that we haven't been able to open our eyes since Christmas Day. But we don't really have a choice. At least it feels like we're moving in the right direction again. Only time will tell.

2005-01-09T16:48:00.000-06:00

Well, some good news: They were able to get an additional 45cc out of Will's pleural cavity this afternoon, and the results were immediate. The doctors say that they can watch his oxygenation levels steadily climb as they pull fluid out of that area, which means his left lung instantly responds to the decrease in pressure. It's not good that it is reaccumulating so quickly, but the fact that his lung continues to respond quickly is a good sign. In addition, my concerns about putting an IV in his head perhaps led the nurses to look one last time for a vein in his arm, and they found one. Next time he might not be so lucky, but for now his head remains free for a comforting parental cupping of the hand. So, right now he's doing pretty well. I almost forgot: his last diaper had 15cc in it. Good news for a little guy with a lot of fluid to lose. That's more in one diaper than he had all of yesterday, so we hope that is the signal of a new trend. That's what the doctors hoped for when increasing his dopamine and getting the fluid off, so it's a nice change to have the result meet expectations. Now we hope the fluid will stay off the lung for a while.

2005-01-09T13:50:00.000-06:00

Sorry for the lack of a post for a while. It has been hard to know what to write because even Will's doctors are stumped at the moment.

They tried unsuccessfully to tap him yesterday, getting only a tiny bit of real thick fluid. His x-rays still weren't looking good and he wasn't oxygenating very well, however, so they took another look and saw that there indeed was fluid there. So, they tapped him again last night late (10:30 or 11) and got 45cc off. They think when they tried earlier they weren't in the right place, or were in a pocket that has formed because of scar tissue that didn't really have much of anything in it. His x-ray after that improved a little, but not like they'd hoped. They looked again this morning and it looks like he has even more fluid there already. They don't know why, but it seems to be getting worse now, not better. That might just be because the fluid flows at different rates, sometimes more, sometimes less, and that last night's tap came coincidentally before a point where it was going to flow more.

So, right now they are tapping him again. They've outlined a course for today where they are going to try to be more aggressive about tapping him before he needs it (much like they've done before), increasing his dopamine again (they had been trying to wean it a bit) to get his blood pressure up to get him peeing more (only 10cc in the past 24 hours) and might try him on a different ventilator, a conventional one that might inflate that left lung a bit better. If that works, great. If not, they'll look tomorrow at the possibility of putting the chest tube in after all and of increasing the octreotide. We're not crazy about either idea, but have told Dr. Colaizy that she needs to do for him what she thinks is best to get him well.

On top of all that, they're putting an IV line in his head right now because the veins in his arms are too damaged from all of the other IVs to allow them to put one there. He needs a blood transfusion to get his hemoglobin levels up, and that's the only place to put it. It's fairly routine, they say, but we still don't like the idea of them doing it. It'll just be in one of the veins in his scalp, and they'll keep it in as long as it stays good.

So, another day of waiting and hoping that all of this stuff they're throwing at him will work. We've been here before and Will has responded, so we can only hope that will be the case again. That said, if you hadn't seen his x-ray or heard from a doctor that the fluid was reaccumulating and that they were concerned, you'd think he was doing OK. Despite it all, his oxygen needs aren't much higher than in the past few days, his blood pressure is pretty good, his heart rate is good and he seems to be handling this well. It's sad to say, but this is normal for Will, and he has proved to be a tough little guy who just rolls with the punches.

2005-01-08T15:32:00.000-06:00

We're here at the hospital in a waiting room, waiting, fittingly enough, for them to try to tap the area around Will's lung again. It's slow going for some reason, but we're hoping they're able to get something out of there this time. His left lung is a bit compromised, and he'll certainly benefit from having that fluid gone. He's been doing OK today, needing more oxygen than yesterday. He did actually lose some weight between yesterday and today... not sure how much, but any move in this direction is a good thing. They're really regulating his fluid right now, not giving him very much, and so they'll need to keep a close eye on things so that he doesn't get too dry. He has enough fluid, as I've written here before, but it's not in the right place.

A correction to last night's post is in order: While meeting his uncle P.J. did allow Will to meet all five of his aunts and uncles who are Mary's brothers and sisters, I neglected to count his Uncle Chris and Aunt Diana, spouses of his Aunt Ann and Uncle P.J., respectively. As one who married into this brood myself, you'd think I'd have been more careful in my count.

2005-01-07T22:33:00.000-06:00

No one is sure why, but Will's x-ray tonight was dramatically improved and he was pretty much back to where he had been earlier this week when he put together a string of good days. They did try to tap him this afternoon, but again there was a clot that blocked the needle, this time before they got anything out of him. So, that doesn't really explain the turnaround. That's OK. We don't need explanations as long as he's doing well. When we left tonight he was on oxygen of 45 with saturations in the 90s, his blood pressure was good, his heart rate was low and he was breathing like crazy.

He got to meet his uncle P.J. today, who flew in from Phoenix for a visit. With that, Will has now met all five of his aunts and uncles. Maybe he was showing off. He still needs to pee (Will, that is) and could stand to get rid of a lot more fluid, but he was doing some of that today and will get another dose of diuretic at midnight to help speed the process.

As for the pleural effusion, since they didn't get anything today, they can't really consider that an official tap. That puts him at 60 hours and counting since the last one, and he should be able to hold out at least until morning, which would mean it had been at least another three days. It's not completely dried up, but it's obviously slowing down, which is great.

2005-01-07T14:35:00.000-06:00

Despite the fact that his morning x-ray showed that his lungs were "whited out" -- a term that pretty accurately describes the way they look when they aren't filling very well with air -- Will was doing pretty well when I stopped this morning. He did need a bit more oxygen, but his blood pressure, heart rate and general disposition were fine. He still isn't peeing much, so they're giving him a couple of doses of the diuretic today in the hope that this will stimulate things. They also plan to tap the area around his lung this afternoon. He didn't make it three days this time, but more than two isn't bad considering where he's been. They might have been able to hold off longer, I'd assume, if his lungs were doing better overall. All of the fluid in his body beyond that in the pleural cavity can't be helping things, as it puts a lot of pressure on his lungs. So, once again, we wait to see what that does for him.

If he gets too edgy, they can put on a CD that Mary and I recorded for him of us reading him stories. He seems to like being read to, so the NICU music therapist worked with us earlier this week to record some of the stories with a bit of light lullaby music in the background. Will now has a CD including "Jamberry," "Bear Wants More," "The Red Barn" and his mother's personal favorite, "Goodnight Moon." My own favorite is "Two Little Trains." It, "Goodnight Moon" and "The Red Barn" all are by Margaret Wise Brown, a name I'd never heard until a few weeks ago. Now, I have a favorite children's book author.

2005-01-06T23:13:00.000-06:00

A quick post before bed to say that Will is doing OK. We were at the hospital later than planned because we were on "pee patrol." They've been giving Will a diuretic to help him pee off all the fluid he's taken on, and usually he responds by soaking a diaper. Tonight, several hours after his dose, he still was dry. This was perplexing, and a bit troublesome. The resident told us it means that while he has a ton of fluid in his body, not enough of it is in the right place to get to the kidneys. It needs to be reabsorbed into his system before he can get rid of it. That takes time, and as long as he is sick with the pleural effusion (which still hasn't needed tapped after 36 hours and counting...), he'll likely continue to leak fluid from his capillaries and elsewhere that will make him puffy. As usual, it's a waiting game. It doesn't help matters if he doesn't pee. However, I noticed about an hour after the last check of his diaper that he was squirming a bit more than usual, and checked. Eureka! There was pee in the diaper. Not a lot, but enough to tell us everything was still working. By the time we left, with our son now in a nice dry (and deservedly so, I might add) diaper, he was down to needing about 50 percent oxygen and seemed ready for a good night's sleep. I told him to dream of babbling brooks, raging rivers and waterfalls. We'll see if that works. If not, we may need to dip his hand in a cup of warm water the next time he dozes off.

2005-01-06T10:32:00.000-06:00

Will had a pretty quiet night and was doing OK this morning when I stopped to see him. He did put on weight again, but it was a lesser amount and they seem to think they have his fluid issues under better control. His x-ray looked better, too, as his lungs were more inflated. There is some fluid around the left one again, but they didn't seem concerned and think they can let it go for a while before needing to tap him again. It's already been a day and he's doing OK, so we take that as a good sign. Overall, they just need to help him to get some of the fluid off and to keep him comfortable as he continues to recover from yesterday's rough morning.

2005-01-05T22:37:00.000-06:00

Will is doing better tonight as the doctors work to find what makes his lungs work the best. They've said many times that all he really needs to do for himself is pee (and they'll even give him drugs to help with that); everything else they can control. Such is the case with his lungs. By tweaking the pressures on his ventilator, moving him around in his bed and raising or lowering the amount of oxygen he receives, they can keep things working pretty well.

That said, I should learn to not use words like "collapse" when talking about his condition. Yes, a portion of his lung had collapsed today, but that's kind of misleading. Much as I've said when referring people to other pages that discuss medicines or conditions that are really more geared toward adults, don't affix the same importance to these things that you would in an adult. Lung collapse in an adult is bad. But for Will, a portion of his lungs is always collapsed because they are still so immature that they don't fully inflate. So, if a portion of his lung isn't open, it's collapsed. Today, a part that had been working well just wasn't working so well. It will reopen again as they alter the way they treat his lungs. At one point, his doctors talked about renal failure. Again, a big deal for an adult, but not uncommon for Will. They just meant his kidneys weren't working particularly well that day. Translation: He needed to pee. They gave him a diuretic and he did. They describe things in medical terms, and we've been there long enough that we've started to talk that way too because it's easier to figure out what's going on with him when we speak the doctor's language.

So, we're kind of back to where we were just before the recent string of good days. He's having some trouble that is very manageable, and they're getting him back on track. We'll find out tomorrow if the fluid around his lung is reaccumulating, and they'll adjust his treatment accordingly.

2005-01-05T11:50:00.000-06:00

Will doesn't seem to like snow. How else to explain the downturn he took overnight and into this morning? While the inches are piling up outside, Will has decided to have some breathing troubles again. They finally tapped the area around his lung this morning, after a 73-hour gap. They took out 35cc, which is about what they've gotten before, but it obviously took a lot longer to accumulate this time.

He has been having some trouble working off his CO2 and had been needing more oxygen. They've found that in addition to the fluid around his left lung, his right lung had a collapsed area this morning. That's not uncommon, and is likely due to another small bit of mucus blocking off a part that previously had been working well. As that works itself free, that area should inflate more fully again. Meanwhile, they tapped the left side earlier than they would have needed (a good sign) so that his left side can now compensate a bit for the right. He's doing better now as a result. We hope that whatever is in that right lung comes out without a fight, not wanting a repeat of the early-morning phone call incident.

Meanwhile, he continues to put on fluid everywhere, topping 1700 grams today. They've upgraded it from a "cosmetic issue" to one that needs to be dealt with. It's not dangerous; but all of that fluid isn't helping his efforts to breathe. They're backing off on his fluids by not replacing what seeps out of the spot where they tapped him as they have in the past, and will give him a diuretic again to help him get rid of it.

Through it all, he seems comfortable. Morphine and Ativan have a tendency to do that to a fella, of course, but really he's just so tough that this just doesn't seem to faze him much. We're hoping he continues to improve throughout the day to get back to where he has been recently. No reason why he shouldn't.

2005-01-04T22:40:00.000-06:00

Will was doing so well today that we braved the snow and ice to go back to the hospital tonight to spend a bit more time with him. We love going to see him any time, of course, but it's particularly satisfying when he seems to be content and doing well. He continued to breathe well, didn't need much oxygen and the fluid around his lung doesn't seem to be accumulating any more quickly. Now he really needs to get rid of all the general edema he has that has him so puffy. There's bulking up for the winter and then there's what Will is doing. He's already sleeping in a bed with a heating element above that keeps him warm enough to go shirtless, so he doesn't really the extra layer. Now, we're just hoping for more of the same or better. He's had a tough three weeks and could use a good stretch as he celebrates his 10-week birthday tonight.

2005-01-04T14:48:00.000-06:00

For the first time in weeks, the doctors actually discussed feeding Will. No time soon, but if the fluid around his lung doesn't reaccumulate (we're up to 55 hours since the last tap and counting), they'll maybe start him on a low-fat formula called Portagen. He needs a low-fat diet because most fats are drawn into the lymphatic system and would, in Will's case, then leak right out into the pleural cavity. This formula would allow him to get some nutrition and start using his digestive system again without wreaking too much havoc with the chylothorax. I could get into the difference between medium-chain and long-chain triglycerides and such, but the point is, he might get to eat soon. This is all still a ways off, but it's encouraging to hear them discuss it.

Otherwise, he's doing pretty well. He continues to pack on the grams, topping 1600 for the first time today, but should be able to pee that off over time. He's retaining more fluid in part because they're not tapping him. Each time they did, the small hole where the needle went in would allow the general fluid in his body to leak out. He would sometimes lose 100cc or more of fluid in a day just through that hole. So, while he's bulking up a bit, the reasons behind it are still positive.

2005-01-03T22:36:00.000-06:00

Today I looked back at the links off to the right down there to all the posts from the past week, and was struck by how upbeat all of those first lines seem. The terms "pretty good," "pretty decent" and even "great" are used to describe Will's days. I was a bit surprised at that, to be honest. The past week has been no picnic for Will. Chalk this up to two things. I do try to put on a brave face and be upbeat when I can in these reports. But I've come to realize that Will seems to rarely have an entire day that is bad. There is always something positive in there, something to bring about hope that tomorrow will be better. If his blood pressure is low, then his oxygen needs might be good. If his heartrate is high, he might be peeing like crazy. He struggles, of course -- mightily sometimes -- but I don't usually need to look too hard to find something positive to report.

I bring this up because Will is in the midst of a streak of sorts. Since being tapped Friday around 6 p.m., he has been doing good. Not great, but good. He's been tapped twice since then, but by the time we left him just a bit ago tonight, he hadn't needed to be tapped for more than 38 hours, and he continued to be calm, with a good heartrate, decent blood pressures and reasonable oxygen needs. He's even peeing well again despite the fact that, contrary to my earlier report, they decided against re-starting the diuretic (but may yet start one overnight). Again, we're hoping against hope that the octreotide is working. As it is, they'll hold off on his feeds for two weeks or more after the last sign of that fluid around the lung, so it'll still be nearly February at the earliest before he eats (after already having gone without it for about three weeks). But if he can get past this and start eating again, he'll get bigger and stronger and his lungs will grow and we can start to see some progress again.

I had a dream the other night that we had brought Will home, and our only concern was that we were holding on to him too much. It was one of those super-vivid dreams, where you're convinced that it's really happening and that the things in real life that run counter to it must be the actual dream. It might be the best dream I've ever had, and even though the feeling had dissipated some by the time I woke up, I was filled by such joy at the prospect of having him home that it was tough to go back that morning to see him in the NICU as usual. We want so much to get him home that it hurts. A few more days like this, where the reference to good things in my post is about the entire day and not just a small part of it, put us that much closer to realizing my dream.

2005-01-03T14:31:00.000-06:00

As of this writing, the doctors still haven't needed to tap the area around Will's lung, which puts him at 30+ hours and counting since the last. That's great news, and it's hard right now to not get overconfident. We're trying to balance hope with reality. When we came in on this icy morning, Will was on 45 percent oxygen and seemed to be doing well. The only thing I would change if given the chance (other than the fact that he's on a ventilator, etc), is that I would get rid of the fluid he's retaining. He's back up over 1500 grams, and it doesn't look like a comfortable state. They're going to start him on one of the diuretics again, and that should help him to get rid of some of it again... or at least to stay even. Otherwise, things are very much the same today as they were yesterday in terms of his condition and his treatment. We like forward progress, of course, but in its absence, we'll always take stability.