Monday, February 28, 2005

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.

Monday, February 21, 2005

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.

Sunday, February 20, 2005

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.

Tuesday, February 15, 2005

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.

Sunday, February 13, 2005

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.

Wednesday, February 09, 2005

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.

Tuesday, February 01, 2005

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.