Wednesday, March 20, 2013
nora's story. part one.
I've had this nagging feeling lately.
You need to write about Nora.
I've mostly just ignored the promptings. I don't really want to write about Nora. I don't want to re-live most of it and I know everyone, including us, has moved on.
But still, the nagging continues.
I guess even our worst memories and darkest times deserve to be documented.
I don't remember the date that it happened. I don't remember what day of the week it was, although I could look. It was cold outside, it was December. I was tired and sore and the babies were brand new. My Mom was at my house helping me, Greg was home, Andy came over.
One of us changed her diaper. Me? Greg? Mom?
We found blood.
Bright and startling and everywhere.
I called the pediatrician.
It's likely a milk allergy, they said.
Bring her in tomorrow if it continues. Don't worry.
My heart was racing, even as the nurse spoke, that I will never forget.
A few hours later there was another diaper change, this time the amount of blood terrified us. Surely something was wrong, surely we needed to do something. Within minutes we had her bundled and the diaper bag packed and we were pulling milk out of the freezer to bring, just in case.
It was late by now, almost 9pm, so we took her to the evening clinic down the street.
Despite the blood and the worry, Nora was sweet and content and perfect. She was dressed in soft, light blue footy pajamas with a tiny pink bow glued to her head. I moved to the farthest end of the waiting room, away from all the other patients to protect my tiny baby. I held her and rocked her and fed her a warm bottle until her heart was content. Still, it makes my eyes well up with tears to even write that sentence. I fed her a warm bottle.
It would be 13 days before she would have another.
Finally, they called us back to see the doctor. Nora was weighed and measured and examined. She was thriving at home with us, she was gaining weight and sleeping and growing and her cheeks were flushed pink, full and round.
I could have never imagined how quickly things would spiral from that moment on. Even in my darkest thoughts, where I mapped out worst case scenarios and imagined all that could go wrong, I never saw any of it coming.
We were told that she looked healthy and well. We were told there was a small, miniscule, tiny chance it could be something very serious called NEC. We were told babies born at almost 37 weeks (Nora was born at 36 weeks 4 days) almost never get NEC. We were told it would be baffling and shocking if she had it. We were told to take her to Primary Childrens Hospital for an X-ray just to rule it out. We were told not to worry.
The minute the doctor left the room my heart sank into my toes and my eyes errupted with tears. Nora had already spent 7 days in the NICU. William, 10. I was exhausted from the experience of the NICU. I was exhausted of the Nurses and Doctors and IV's and feeding tubes. The heart rate monitors and blood pressure cuffs and the helplessness of watching someone else care for your own baby. When we had left the NICU that last time with William I had promised myself and my babies and God that we would never come back. Some people leave the NICU with lifelong friends in the nurses and beautiful, life-affirming experiences behind them and gratitude in their hearts. Although I was grateful, although I had tried to make the best of my experience there, mostly I just never, ever wanted to return.
They can't take her from me again, I sobbed into Greg's shoulder as we sat in the bright, bright room. I can't handle it, I insisted. Dread and fear and overwhelming heartache filled every crevice of my body, mind and heart. I was so, so afraid.
We drove to Primary Children's Hospital and Nora was immediately x-rayed. The nurses asked us lighthearted questions and remarked on how cute Nora was as they positioned her on the table. How sweet and precious and tiny. I tried to keep my spirits up and be positive. Greg held my hand and took a picture of our tiny baby on the x-ray table. A milestone, he said. He promised me nothing was wrong. He promised this would all just be a strange memory.
We were moved to a room in the ER to await the results. By now, Nora was starting to get hungry again, it was close to midnight. Each time a nurse came in to check on us I insisted that I needed to feed my hungry baby. She cried and opened her little lips against my chest, searching for the milk she knew I had inside me. You cannot feed her, no matter what, they told me, and after a while I was furious with every doctor and nurse who told me no. I bounced her and rocked her and sang to her and we both cried. Eventually, we both sobbed. She continued opening her mouth to find my breast, opening it as far and as wide as it would go, confused and devastated to find nothing waiting for her. She was so tiny, so brand new. She knew nothing in the world yet except hunger. She knew nothing except that I was the person who fed her. I was the one who smelled like milk. My whole body ached to feed her. Physically and emotionally and entirely, I was filled with pain. The milk rushed to the surface in response to her cries. My body yearned for a baby to feed. My baby yearned for me to relieve her of the devastating hunger. I could give her nothing.
We waited for what felt like days, but was, in realty, hours. I sobbed. Nora sobbed. To this day, it was one of the most excruciatingly painful things I have ever done. Time passed and Nora eventually fell asleep, exhausted and defeated and starving, but done trying.
We recieved the news on the phone first. The doctor who had seen as at the clinic had followed up with the hospital and decided to call us in that room to soften the blow. Greg answered the phone and I felt like I might throw up. I knew, from the look on his face, that the worst had happened. The chances were so small, the likelihood so miniscule, and yet, here we were.
Nora had NEC.
If I was upset before, I was absolutely destroyed now. It was hard to stand or to breathe. I understood almost nothing of what I was told. Doctors and nurses filtered in and out of our room, explaining things to us again and again. Explaining NEC, explaining the treatment plan, using big words and complicated medical jargon while I held my tiny baby and cried. I heard little of what was said to me, and what I did understand made me want to curl up in a ball and disappear. Nora was staying at the hospital for a few weeks, best case scenario. She was very ill. It was very serious. There was risk of bowel perforation and serious infection. It could be fatal. She might need an operation. She could lose part of her bowels. She would not be allowed to eat for 10 days, at least. They needed to draw her blood, they needed to put in an IV, she would be transferred to the Primary Children's NICU and kept in isolation. I was livid. I was confused. I was devastated.
I knew nothing except that my baby was starving and I had the milk to feed her.
We moved to the NICU and Nora was undressed and laid in the incubator. I felt sick at the sight of them hooking her back up to the monitors we had left behind only a week earlier. She had a crib at home. She had clean pajamas in her drawer, and a lamp next to her changing pad and she had a brother and a sister and warm blankets in the cupboard. She ate 3 ounces every 3 hours. She liked to be swaddled, she liked to be held. I had changed every diaper and made every drop of milk. She had a home and a family and she was ours, we had named her Nora Hattie. How could this be happening?? How could they be taking my baby who was, just hours earlier, sleeping peacefully in my arms??
I wanted to take my baby out of that incubator and RUN.
The next few hours are a complete blur to me. I remember nothing that was said, and little of what was done. I left the room when they drew her blood, I signed a form allowing them to put a pic line in. I sat in the corner and cried while a team of doctors and nutritionists talked to Greg. I stared at my baby and tried to will all of it away.
Eventually Greg dragged me away from her bedside and out of the hospital. He put me in the car and drove me home. I don't think I spoke or cried, even. I remember my forehead against the ice cold car window. I remember clutching the diaper bag, her soft blue pajamas and the blanket I had brought for her hours earlier. It all seemed to stupid now. I had worried about bringing milk to thaw in case our time in the waiting room dragged on. I had sat in the farthest corner to protect my tiny baby from illness. And now, none of it mattered. She was in the hospital. She was alone. She was starving and couldn't be fed. She was crying. She was in pain. And I was in a car headed home. I had left her behind to suffer. And I was her Mother.
I remember walking into the house and down the stairs. I remember seeing my Mom waiting for me. She had been crying, a lot. I remember dropping the diaper bag and falling into her arms, falling to the floor. I remember sobbing and wailing and screaming. I remember begging my Mom to make it all go away. I remember telling her over and over again that Nora was starving, but they wouldn't let me feed her. Again and again, that's all I could think or feel. She was starving, Mom. Starving.
Eventually everything went dark.