The following is an excerpt from my untitled manuscript. Please offer feedback if you're interested in reading more. Enjoy! Carolyn Murray
Chapter One
Don't Take My Sunshine Away
I held my new baby boy in my arms while my two-year-old daughter sang to him. We were in St. Luke's Hospital's new obstetrics unit, a free standing building with beautifully decorated, private rooms.
She looked at him with tenderness and crooned "You are my sunshine, my only sunshine, you make me happy when skies are gray. You'll never know, dear, how much I love you. Please don't take my sunshine away."
I choked up. I'd just learned that Daniel's head circumference didn't fall within the normal range, that he was microcephalic. I felt an anxious pit in my stomach and a fear that the sun would never shine for any of us again.
I'm a registered nurse, and I'd cared for a baby once who was born microcephalic. He also had a string of other anomalies to deal with, including the inability to suck due to a small chin and abnormal palate.
He was fed through a tube in his stomach. He also stopped breathing frequently, and an apnea monitor was strapped to his tiny chest. Since he couldn't breathe without it, he also had a tracheotomy in his throat and needed to be suctioned every so often. That baby died in his first year of life. His name was Adam, and he was an angel despite all of the problems. Soft, sweet, just the way babies are.
Here I was, a decade later, and hearing that word brought back the memory of Adam. I was lying in bed when our pediatrician told my husband, not me, in a very offhand, sort of "oh, by the way" manner, that our newborn had "relative microcephaly." She didn't sound too concerned. She said that if head growth didn't pick up within a couple of weeks we'd do a neurologic work-up. I just knew she was totally wrong, and truth be told I was annoyed, even angry-- that she'd mentioned the word.
Melody sang to Daniel, happy that her baby brother was finally here. She would be turning three years old in just a few days, two days after Christmas. Daniel was born two days before the holiday, December 23, 1998. There were wreaths hanging, tree lights glowing in the lobby. It was supposed to be a happy time.
Mel helped the nurse on duty give Daniel his first bath. She stood on a chair and gently sponged him with the washcloth. She was able to appreciate her first moments with him much more than I was. Her innocence protected her. I lay in bed hurting from the c-section, but the real pain was in my heart.
When his bath was finished, the nurse handed him to me in my bed. So tiny, much smaller than Melody was at birth. His head did look small, and his forehead folded into thick wrinkles like a Sharpei puppy whenever he cried.
His face was badly bruised, and no one knew why. My obstetrician said something about the possibility of him "bumping" into my tailbone. Daniel's pediatrician thought that one particularly dark bruise on his nose was a birthmark. I worried.
That night when everyone but Tom had gone home, I tried to nestle in with Daniel and get him to breastfeed. He just couldn't seem to get the hang of it. My milk came in as it did with Melody, full force and ready for service. Whereas she latched on immediately after birth, Daniel was taking his time. I wasn't really concerned about it; I felt that I could help him learn the art by myself.
The nurse came in to check Daniel's blood sugar level, something that they did every evening. It registered at 30, a little low. When the nurse left the room, Tom followed her. He came back a few minutes later with news that I didn't want to hear.
"His blood sugars are too low. They're going to transfer him to the NICU (neonatal intensive care unit)," he explained. I was angry. I thought he had pushed for something that wouldn't have been done if he weren't a doctor himself. It was the beginning of a rift between us that would never really heal.
I watched them carry Daniel from my room and I started to cry. This wasn't supposed to be happening!
My pregnancy had been difficult, with severe, incapacitating morning sickness. There were indications that something was wrong, but they weren't conclusive.
My Alpha Feta Protein test was within normal limits, but on the high end. Since I was over 35, I was offered an amniocentesis, but I opted to have a level 2 ultrasound instead. This would show greater detail, but was non-invasive.
I remember lying on the table with the cold gel spread over my bulging belly. The technician and doctor both took a look and the tech said, "Do you see that?" to which the doctor said, "yes, the ventricle is slightly enlarged." They pointed out that one of the brain's ventricles was within normal limits (once again) but on the high end of normal. They followed up with a few more ultrasounds during my pregnancy, and at the last one they said not to worry.
I failed my glucose tolerance test. I thought it must be a mistake and had a neighbor who is also a nurse repeat it for me. Again, it was high. So, I finally scheduled the longer version of the test which required me to drink heavily sweetened liquids over a several hour period, then have blood drawn to see if I tolerated it. This time I passed.
I had dreams that concerned me. One involved passing something "huge and gelatinous", and in another I was in the shower and my placenta came out. It was bloody and "cancerous". As the water flowed through it a snowflake pattern appeared.
After the second dream I was concerned. I went to my new obstetrician and told her of my fears. I was about six weeks along at the time. She examined me and couldn't hear a fetal heartbeat; then told me she'd do an external ultrasound. Finally, she heard his little heart beating, and I went home relieved.
Daniel went to the NICU where the nurse on duty put an intravenous line into a tiny vein in his foot. There was concern that an infection might be causing his glucose levels to be low, so he was given antibiotics as well as a sugar water solution.
Later, a nurse wheeled me to the unit in a wheelchair where I scrubbed, put on a gown and went to his side.
Thanks for your support!
