Tomorrow marks Joey’s second Angelversary. I remember the details of that day with such clarity. Although two years later, I wonder if the details are as they occurred or if my memory is altered, I trust that most of the recollections are true.
The weather in Minnesota today was similar to the weather the morning of January 23, 2010. I awoke that morning to freezing rain. We knew that the lung biopsy results would be back sometime during the day. We also knew that the cut of the lung taken for the biopsy was normal on the outside, and abnormal inside. I couldn’t shake the feeling that my life as I knew it was about to change.
I scraped my car windows. I stopped at Target on the way to the hospital. Molly needed dog food. A voice in the back of my head told me that I wouldn’t have time to stop later. I bought a 17.6 pound bag of Beneful and a Keurig K cup carousel. Why I thought I needed to buy the carousel that day, of all days, is beyond me but if felt like some sense of normalcy. I bought the coffee maker the day he was born. Strange irony that I bought the carousel the day he died.
I arrived at the hospital as they were finishing rounds. They didn’t say much, deferring the discussion until later in the day after the results were in. I read to him, held his hand, talked to his nurse Joyce who had been one of his primary care providers during his stay. It was a Saturday so the coffee cart was closed. I drank water with crushed ice instead.
About noon, the doctor told us the results would be sent over in half an hour. Joyce asked if the next half hour would be long. My only thought was that it was the last half hour I could pretend my little boy was coming home. I wanted to be wrong. But when Joyce opened up Joey’s medical record, I read in her face that I wasn’t wrong.
The doctor called us to a conference room. There was also a fellow, and Joyce. The doctor told us the diagnosis – and the prognosis. We were advised that no further treatment was warranted. We were told that we would have some time to remove him from support, but not a lot of time. The circuit was failing, and Joey’s body was deteriorating.
We went back to see Joey. They pulled the sheet around his cradle. It was so claustrophobic. Joyce worked well beyond her shift making arrangements for us. She contacted LifeSource, and Now I Lay Me Down to Sleep. She took handprints, and footprints, impressions of both in clay, and locks of Joey’s hair.
Tim and I had both driven to the hospital separately. I texted my family to see where they were with John. They were at the zoo. They left for home as soon as they received the text, arriving there before we did.
They knew by our faces that the news wasn’t good. We told them Joey’s diagnosis and that we were removing him from support that evening. Tim called his family; my mom and laura handled the calls for me. I found clothes for the photos. Laura promised to take John to get his haircut. The length of his hair seems like it is something that should have been so irrelevant on that day. But it was going to be the first, last, and only time we would have the opportunity for family photos. And Laura understood all that without me having to say any more.
I wrote Joey’s last CaringBridge post. I would write as me after his death.
We went back to the hospital and hung out with Joey. LifeSource came. We answered what seemed to be a million questions. I just wanted to be with my son.
They transferred Joey to a room in another wing, where families whose babies get to go home go to learn how to care for them before they leave NICU.
My parents and Laura brought John. The staff gave him a quilt and a book that had been donated to the hospital.
They deintubated Joey. He didn’t need the ventilator to breathe – he was still on ECMO – and I wanted to see his sweet face. They disconnected his chest tubing which had been put in place to monitor the incision. I dressed him for the only time. I put him in a long sleeve onsie and wrapped him in a blanket my godmother’s sister had sent at Christmas time for him.
They brought in a chair, and transferred him from his cradle to my arms. I had to be careful because of the tubing in his neck. He was on high doses of fentanyl to make sure he wasn’t in pain. The photographer snapped photos. John sat with me on my lap. He talked to Joey, held his hand, gave him a kiss. Tim stood by the chair. We took turns holding Joey. I asked if my mom wanted to hold him. She did. My father and sister held him too.
My mom, dad, and sister took John home. Tim and I held Joey for a bit, and then told the staff we were ready for clamp off. After he was ready, they handed him to me and I sat with him on the bed. I cried, and talked to him. We told him how proud we were. We told him about the many people waiting for him. He fought a good fight. I wanted him to know that I knew that. And that it was okay to go. Tim and I both told him how much we loved him. He left this world quickly and peacefully.
The fellow came in to check his heart. It had stopped. She told us to take our time. She said, “This doesn’t change anything. Take as much time as you want.” But his passing changed everything. He was no longer Joey. He was just the body that had housed Joey’s soul.
I am not going to lie. I wanted to put him in my bag and run. But it wouldn’t have done any good. He was gone from his body long before I would have reached the parking lot. Still, putting him back in his cradle and leaving him for the last time was almost as hard as holding him while he died.
We both had cars at the hospital, but we took only 1 car home. I am not sure how I fell asleep that night.
It is now two years later, and I still can’t write this without tissues and tears. If it hadn’t been the day he died; if it had just been another day home from the hospital getting used to baby number 2, I am sure I would have remembered none of the details from that day. But it wasn’t just another day. It was the day my little boy died, and the day that a piece of my heart died with him.