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.

3 Comments:

Blogger Anne Remington said...

Thanks for sharing this part of your family's story, Mary. We are still here listening to you, sitting by you, waiting with you for whatever comes next. And above all, remembering Will.

5:55 PM  
Anonymous Anonymous said...

We welcome you back with tears and hugs. We cannot replace your loss but we suppport you with prayer.

May the Lord uphold you and John as your routine changes yet again.
May he bless you with engaging work to do and the heart to do it despite the pain

God Bless you both +hephzibah

7:38 PM  
Anonymous rebecca said...

I cannot imagine anything I could say to give you comfort at this time, but to say that I am thinking about you, even though I barely know you, and to thank you and your family for sharing your story with the world.

7:29 AM  

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