It's 1:26 a.m. on Thursday morning. I should be asleep, but I'm not. And it's not because I have a bottle to fix or a diaper to change. It's because I don't. I close my eyes and all I see is him. I open them up to a home filled with toys he never got to play with, clothes he never got to wear, blankets that never kept him warm. A crib he never slept in.
We had 4 baby showers. We got more stuff than I ever could have imagined. This was the most spoiled and adored little baby even before he was born. Gary and I used to talk about how blessed we were. How God was shining down on us, blessing our baby and our future. How perfect our lives were.
I sit here staring at the screen. I read every entry on the blog and every comment. I watched the story unfold--beginning with anxiety and uncertainty, followed by joy as we saw him progress, and finally the last days when he got sicker. I need to sleep. I want to write, I need to write. I need to release this hurt in a lovely, eloquent story that ends with an inspiring moral. But instead I stare. And I wonder. And I recall every moment leading up to the end. Maybe I just need to tell the story.
We stayed in a room in the hospital Saturday night and Sunday night. It was just down the hall from him. Monday morning at 6:20 the phone rang. It was the NICU, Rhonda our nurse wanted us to come. We did. He had begun losing blood out his ostomy. Bright red blood. We waited for the doctors to come. One by one residents, nurses, and doctors came to his crib. Each one would look at him, then his ostomy bag, and say, "Oh!" The time passed. I stood by his crib. He was weak and sleepy. I pumped. I checked on him again. I sat in the chair. Gary went down to get us breakfast.
At 9:20 I got up to put the milk I'd pumped away. I looked at his monitor and watched as his heartrate went from 120 to 100 to 83 to 66 to 50. I dropped the milk. I called the nurse. Then it was 0. Zero. Nurses rushed to his crib. They sent someone to get the doctors. They pulled the crib away from the wall and surrounded him. I don't know how many, but all those wonderful people who had come to love my son began fighting for his life. One of them said, "Sarah, get Gary!" I ran out to find him just coming in. We watched as two fingers pressed again and again on his little chest. He was intubated. Someone squeezed the bag over and over to make him breathe. Just then an angel appeared.
Dr. Raguveer, who had first cared for Carter when he was born, had been gone to India for a family emergency. They didn't expect him back for a week, yet there he suddenly stood, beside me. He took us out to the waiting room and calmed us. After a few minutes, he went to check, and we followed. Still they worked. Dr. Oluola was there, along with Dr. DeClaro (Carter's girlfriend) and at least half a dozen nurses. They told me to come to him, to talk to him, to tell him it's not his time. I did. I begged him to stay. I told him God had many things for him to do. We had so much to do together.
They got a heartbeat. It rose and rose back to the 120s. He'd come back. But he was bleeding. This time from a tube inserted in his mouth. A constant stream of blood.
I noticed another angel. Faye, who had been his nurse several times and was so good at making him better, was there. In shorts and a t-shirt she was there. I found out later that she'd awoken at 6:30 that morning with a bad feeling about Carter, and so she came to the hospital on a day she was not scheduled to work. God called her to fight for my baby.
All morning and afternoon they fought. They stood over him draining the blood and giving him medicine and more blood. Dr. Schropp came and said there was nothing he could do from a surgery standpoint, only medicine could make the bleeding stop. Dr. Cocjin came and did a scope to find the bleeding. He determined that he could not stop it, and neither could anyone at KUMed. So they arranged for him to be transferred to Children's Mercy.
I could ride in the ambulance, but Gary would have to follow. The team arrived and slowly packed Carter's sick, lifeless body into a new transporter. As I said goodbye to all the nurses, doctors, and even Sheldon, the "door man", I knew it was bad. Dr. Oluola hugged me and said, "He is very critical now. It's in God's hands." I had to run through the hall to keep up with the team wheeling my little boy away. In the elevator, the team leader said to me, "We are going to do what we can, but he is very sick. The ride will be difficult for him."
I sat in the front seat while my baby rode in back and his daddy followed. When we pulled up to Children's Mercy, I jumped out and went around back of the ambulance. They lowered the transporter down, and I looked through the window. Just as I did, his eyes opened up. Wide and looking directly into mine. It was as if we were connected by a cord for a brief second. Then they wheeled him away.
They made me stop at the desk and go through "orientation" while they got him settled in. I waited in the lobby for Gary. We sat, numb and anxious. We were led back to a room by the social worker. Then to another room that was bigger. Finally we begged to see him. "They are still working on him," she told us. "So many around him. It is difficult to see." She went to check. She returned with "We very rarely get a baby from KU. If we do, we know he is very sick. I looked at the faces of the doctors and nurses. I could tell they think he'll die."
We begged some more. They took us to him. The same picture as before. Surrounded by people, medicines, and tubes. Blood draining, sometimes just spilling out his mouth and nose.
The doctor came to talk to us. It is bad, she said. His liver is just too sick. His kidneys are failing now, and there is swelling in his brain. He seems to have had a stroke, and he is unresponsive. If his heart stops again, we don't know we can start it. This is what we kept hearing. We would have to decide to either let them keep him alive artificially or have them stop working so we could hold him in his last minutes.
We had to leave between 7 and 8. All of our family was there. We went back to him at 8. We watched as they worked. At about 8:15 his heartrate began falling. Down into the 60s and the doctor told us now would be a good time to stop if we wanted to hold him. The most difficult decision anyone could ever make is to take away life support from your child. But we knew, so we said ok. Immediately they turned off the monitor and wheeled in rocking chairs. Then it seemed to take forever to disconnect him to the dozens of tubes and wires. Finally they wrapped him in a blanket. They said he'd take some breaths, then eventually stop. He wasn't in pain, they said. Sometimes it only takes a few minutes for the heart to stop, and sometimes it takes longer. It would be quick for him, they thought. Even then I prayed aloud for God to give me my miracle. I wanted it so badly.
The moment was so surreal as they handed me my baby boy. Finally he was free of the wires and tubes. His eyes were closed and his face was relaxed. His little chest rose and fell with each big breath. We held him and rocked him and talked to him. We told him to not be afraid. We'll see him again. We love him and are so happy to have been his mommy and daddy. We are proud of him for being so strong, but he doesn't have to be strong anymore. Now he is free. Now he has peace. His breathing stopped. I sang him our lullaby.
The doctor came in at 8:45. She listened for awhile with her stethoscope to his chest. "He has passed" she said. We stayed with him a bit longer, then walked down the hallway to our family, Carter's body in my arms.
We entered the room filled with our loved ones and stood in the center. I don't know how long. Seconds, minutes, hours?? The saddest room on the earth I'm sure. My mom asked to hold him, and she took him from me. Then Linda, then Cheryl. I remember saying that I loved being a mom. Then they all left the three of us, Mommy, Daddy, and Baby to be together one last time.
The nurse came in. I told Carter that the nice lady, Shannon, was going to take him now. We told him again how much we love him. Gary took him from my arms and handed him to her. I'll never forget watching a stranger take my baby and walk away.
The rest of the night is a blur. I know we talked to the chaplain and the doctor and saw our family again. I know Vic gave us a ride to our car and then we went to the hotel. I know eventually we fell asleep.
Tomorrow is the visitation, then the funeral is Friday. Gary and I are going away for a few days, and then I guess next week life begins again. I guess Gary will go back to work and I'll find a job. They say over time our wounds will heal and our hurt will lessen. They say.
They say God is here. I guess He must be. I cannot see or feel him, but I know he's holding me up. He has to be. I didn't get my miracle. I don't know why. But I did get to be a mom. Only for a little while. And Gary got to be a dad. We were a family.