Friday, January 27, 2012

Stephanie's Story: In The Beginning...

 "It was the best of times, it was the worst of times... 
- Charles Dickens

Twenty-four years ago today was one of the best…and worst days of my life.
On the afternoon of January 27th, 1988 I waddled into the hospital, excited about the imminent arrival of my second child. I was admitted, examined, my doctor was called, and I paced the hallway, anxiously awaiting the use the hospital’s new birthing chair.

My labour had been progressing well and I even felt less stressed than with my first baby, as I now knew what to expect…or so I thought. When my labour pains became more intense and closer together I was taken to a bed to reassess my progress and upon examination was told that my baby was in distress. I became a bit concerned as the nurse placed an oxygen mask over my face and told me I would be prepped for the OR to have a C-section. Unfortunately, before the OR could be set up my labour had progressed to the point where surgery was no longer an option. So with no epidural, sucking back pure oxygen, they wheeled me into the delivery room in full labour. I became even more concerned when my husband was informed he was not to come in with me.

The pain was intense and it seemed to go on forever. This was different from my last delivery, things just didn’t seem right. There came a point when all I knew was darkness and pain, as I squeezed my eyes tightly and let out screams that were heard down hall. The situation was getting desperate, as the doctor pulled with the forceps, two nurses pushed on my abdomen, and I pushed with all my might. All along the doctor had been yelling, “Push, push!” when the nurse finally snapped back, “She is pushing!” Sometime after that was when I decided I was too tired and in too much pain to continue, and that I had had enough. No more. A wonderful calm came over me at that moment and the only word I can use to describe the feeling I had is blissful. What happened next I will leave out of this recounting as it is an experience I have related to very few people, but after that I summoned all the strength I had left and gave one last push. The doctor realized this would be it, so just before my final push, he reached in and fractured my daughter’s collarbone and enabled me to finally bring her into this world.

The first words out of my doctor’s mouth were, “Oh my God.” Not the kind of thing you’re waiting to hear upon the birth of your child. My mind was whirling. What was wrong with my baby? Was it a monster? Did it have two heads? They surrounded her and started working on her. I had to ask if it was a boy or a girl, and I heard the nurse quietly said, “Should I tell her?” And the doctor answered. “It’s a girl.” and that was it.  

I had a daughter, but I had yet to see her, or hear her cry. A man, whom I later found out was the pediatrician, burst through the doors and hurried over to my daughter. Since finding out I had a daughter I had yet to shed a tear, or scream or even speak. I was aware of everything, but felt nothing. I was in shock. They finally whisked my daughter away, and my doctor returned to finish up with me.

When they finally wheeled me out of the delivery room, they stopped in front of the nursery window for me to take a look at her. I couldn’t see much. She was in an incubator in the back with wires and tubes sticking out everywhere. I did notice that she seemed to fill the incubator. That’s when I learned that she weighed 12lbs. 4 ozs and was 25in long. She was classified as an infant giant. I said, “Her name is Stephanie.” I wanted to make sure she had a name…in case something should happen.

I finally got a good look at her when the paramedics wheeled her incubator down to my room just before taking her to the children’s hospital. She looked like a three month old. No spindly arms and legs for her. She was plump and double chinned, and they still were unsure what was wrong with her.

Five days later, after having tests and fear of infection was no longer a worry, the doctor released me from the hospital and I was finally able to go to the city to see my daughter and finally touch her for the first time.

It was discovered that she had Islet Cell Hyperplasia, or Diffuse Nesidioblastosis. In short she was producing too much insulin and her blood sugar level was almost non-existent. They didn’t have a treatment, as it was a rare condition, so they treated her with a blood pressure medication which had a side effect of raising blood sugar levels…but not enough. So they added cornstarch to her formula. As you can imagine, this filled her up rather quickly and she began to refuse to eat. An NG tube was put through her nose and down into her stomach and  gavage feeding was necessary. Eventually, this course of action, with its side effects, proved to be less than ideal and surgery was the final option. 

Her first surgery at two months removed 95 percent of her pancreas. I had gone home to be with my son for a few days, relieved that the surgery had worked, but when I walked back into her room a couple of days later, my heart sank as I saw the bottle of blood pressure medication back on her night stand - her blood sugar levels had dropped too low once again. Her second surgery at three months removed all but a sliver of the remaining pancreas, and even that small amount allowed her to function without insulin needles for sixteen months.

It was nerve wracking bringing her home at three month old, worrying about blood sugar levels. I had to test her blood every four hours, which seemed rather cruel as she was sleeping through the night by then. I think it bothered me more than her, as she slept through most of the night testings.

To look at her now, it is hard to remember what a sick little girl she had been. The only physical signs of her medical condition are her insulin pump and the large scar across her upper abdomen. The large scar down her spine is a story for another day – another birthday adventure.

So, happy birthday to my beautiful, brilliant, baby girl – sorry, young woman. Thank God she is a stubborn, tough cookie who has been around to brighten my life for the past 24 years. I love you Stephanie.

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