Monday, November 21, 2005

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.)

Friday, November 04, 2005

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.

Tuesday, November 01, 2005

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.