it shouldn't have happened
|This has been a hard week. Maybe it’s too soon to try to write about it. I’m still too close. But I don’t think I’ll be able to sleep until I do. Ed, my brother-in-law, was the one who summed up the situation—“I never dreamed I would be sitting in front of a piece of paper with two columns—the one on the left was headed if he lives and the other was untitled—but if it had a heading, it would read, if he dies.”
Last Wednesday morning, 18 April 2012, began normally. I am a student-worker in the same office as Mom. At about 10:30, she came to my cube and said: “Guess what? Dad is in a minivan with two kids!” I must have looked puzzled, trying to figure out which kids and why this was good news.
She saw I was confused. “Rachel’s having the baby!”
Mom and I met Dad and the grandkids at a fast food place for lunch. The plan was I would go home with them to babysit for the rest of the day. If the labor went long, the kids would kip out in the living room for the night. Everything seemed to be going perfect.
Until the phone call.
The hot dog was coming slowly. At one point, both kids were throwing tantrums for the edification of everyone in the dining room. Hayley was fussing over the fact I’d given the last bit of my cookie to Danny, never mind that she’d gotten a bigger piece five minutes before.
Then Dad got a phone call. No details, just: The baby was stillborn. No heart beat. Rachel and Ed are on their way to the hospital.
Mom couldn’t go back to work. We headed home—where I watched my niece and nephew and Mom and Dad disappeared into the timeless eternity of the hospital.
I don’t know what I was thinking, that day—I couldn’t talk over my fears or my grief. I spent time on the phone with my other siblings, telling them what I could, but no details without Rachel’s permission. Asking for prayers on behalf of Rachel, Ed, and the baby.
I was certain that the baby was dead. I didn’t even know if the dead baby was a girl or a boy because Rachel hadn’t wanted to know. Because she had one of each, she had wanted this baby to be a surprise.
I didn’t say anything to Hayley or Danny.
I didn’t know what to say.
My parents came home at around seven pm. The baby was alive. He was a little boy. That was the first news I processed.
There had been some trauma, but his heart was beating, and there was brain activity—abnormal brain activity. There had been some brain damage—if he lived, he would have special needs. I thought about my sister—she would be strong enough.
I didn’t want to think that this unnamed nephew of mine might die—not after this first miracle of life.
The doctors had put him on a hypothermic therapy to minimize further brain degeneration—he was hooked up to a cooling cap that would bring his core temperature down while heat lamps would make sure his skin temperature remained normal. It was a delicate balance. This would last seventy-two hours, ending on Saturday afternoon.
Rachel had been on her feet all day, and Ed hadn’t eaten, so the two of them were going to take their children home to sleep while Grandpa stayed at the hospital.
I gave my sister a hug, thinking about what it should have been like. I should be seeing her radiant smile. I should be congratulating my sister on the birth of a healthy baby boy. I should be happy for them, and for myself. Instead, I was trapped in hugging her, in promising that I would be there, do whatever she needed.
This shouldn’t have happened.
Rachel was hopeful. Ed had been listening to the doctors, who were only cautiously optimistic. He was fairly certain that the baby was not going to make it.
They named him Caleb.
On Thursday, after my classes, I went with my parents to the hospital room and met him for the first time. I just missed seeing Rachel, Ed, and the kids who were about to go home.
Caleb had a healthy body. His kidneys were functioning, his liver was good, no signs of jaundice. His pancreas was producing more insulin than I do with my adult, type one diabetic body. His heart had a steady rhythm. His breathing was good, with some signs that he was even trying to breathe without the ventilator help. But an ultrasound had shown that his brain was probably incapable of maintaining vital function without external aids.
After sanitizing my hands, I sat holding Caleb’s hand and singing to him. I rubbed my thumb against his little fingers, wanting to feel them grab onto mine, but he lay there, still, with the ventilator pumping his breath and so many tubes and wires and monitors attached to him.
Hopes for our miracle were fading.
By Friday, the doctors were not even cautiously optimistic. They were preparing us for his death.
It was the first time I had the opportunity to talk with Rachel since Wednesday. “How are you?”
“Fine.” She was lying, of course, the polite lie. “How are you?”
“Fine,” I lied back at her. But I couldn’t let it rest there. “I just . . . I don’t know what to say.”
She was looking down at her hands, lying there, on one of those uncomfortable chairs that they put in hospital rooms on the theory that they are supposed to fold out into a bed at night. There was a half wall to lend privacy between us and Caleb’s monitored crib.
She choked up a bit. “I feel like he’s not going to make it.”
I just stood there, silent. I could acknowledge within myself—never out loud and to her—that I was beginning to feel the same way.
“I hope that he will, but I don’t think he is.”
I think I was starting to cry, I couldn’t see her, not really.
“And now I need you to go.”
I nodded and started to get my things together so I could go to the NICU’s family room and leave her with her son.
She stopped me. “You don’t need to leave the room. It’s just. I feel like everyone is looking at me.”
I’m not sure two-year-old Danny understood what was going on. He came into the room, excited at the chance to see his parents, who had been so distracted.
Rachel was smiling, putting on her public show of strength for her older son. I can’t imagine what ran through her mind in those moments when she didn’t feel on display.
“Here’s Caleb. Do you remember? He’s ‘Caleb, the baby who doesn’t cry?’” This was the second time Danny had been in to see his new baby brother.
Danny whispered something.
Ed nodded. He was the only one who could hear the almost inaudible words. “That’s right, Caleb is a baby brother for Danny.” After some direction, we were able to get pictures of Danny holding Caleb’s hand, but he soon tired of that game and wanted to leave.
“Tell Caleb you love him,” prompted Rachel.
“Love you,” said Danny, and then he hid his face against his father. Ed let himself feel the grief in the brief moments while his son wasn’t watching.
Five-year-old Hayley insisted on showing Caleb the rainbow she had drawn--three rainbows inside each other. Then she posted it on the door.
“Were you going to tell Caleb a story?”
“Once upon a time, there was a baby named Caleb,” the little voice was smooth until she got to the end of the first sentence, and then she started talking slower, pausing and repeating words. “And a little girl named Hayley came to tell him a story and sing a song. But she forgot the book, so she had to tell the story next time. The End.”
Rachel laughed. It was the first time I’d heard that sound in a while. “Very good, Hayley. I’m sure Caleb liked that story.”
“I love Caleb, he’s so cute.”
On Saturday, our seventy-two hours in limbo were up. After he was warmed, they would perform an EEG to determine what would happen next. Best case scenario, the miracle that we were hoping for was brain activity, strong enough that he would be able to live off of the ventilator.
We didn’t get our miracle.
When the EEG read a flat line, things became simpler. It wasn’t what we wanted. But at least we knew—Rachel and Ed found some peace in that.
For the first time, Rachel was able to hold her son. I stood there, watching my sister in the chair, holding him as the nurses made sure there was enough slack in his wires and tubes and monitors. Alarms kept going off and the charts went wild.
I stared at her. I admit it—I didn’t want to, but she was so beautiful with her Caleb. She found such peace with him in that moment.
As we left them for the night, I leaned down and kissed Rachel’s cheek. “I’ve been feeling the lack of saying this all week.” There were tears in my eyes. “Congratulations, Mommy.”
That wasn’t the end. We may never know why Caleb left us. Two or three out of every thousand babies born, experience a similar trauma during the birth. All we know was that everyone did everything right. Rachel. Ed. The doctors. The midwife. No one made any mistakes that we can point to and say, “if only.” And I find that comforting, as much as there is any peace to be found here.
Because Rachel and Ed believe in organ donation, there was another twenty-four hour process of declaring him officially brain dead. He was declared brain dead at 1:50 pm, Monday, 23 April 2012. There were 106 different possible recipients who were young enough to be a possible match. The organ donor people contacted to see if they wanted our Caleb to be their miracle. But he was too small or the recipient too sick. At around 11 pm, Monday night, Caleb was taken off the ventilator.
Five days seem like such a short time.
All we have left are pictures—hundreds of pictures—and Caleb’s ashes, which Rachel plans to have buried with her when she dies. But life without ever him leaves a gaping hole that we never knew needed filling before our short time with him.
Ed, who is more articulate than I knew, said it best on Tuesday evening: “After talking with a friend today, I would like to have one thing on the record. I would not have given up Caleb for anything. Our time with him was worth it. Every painful minute of it.”