My husband and I were so excited to find out that we were expecting another little girl. We thought it would be wonderful to have two little girls, sisters, who could grow up together and always be best friends. From the time I was 15 weeks pregnant and found out that my AFP test was unusually high I knew that something was terribly wrong with our baby. All the follow-up tests and ultrasounds showed a normal baby inside of me, yet I still could not shake the feeling that something was devastatingly wrong. Laurel Grayce was born three weeks early weighing a little over five pounds. The doctors pronounced her active and healthy and sent us home the next day. I still felt something was not right with her, and I even delayed sending out birth announcements until I was certain everything was all right. Feeding problems and failure to thrive landed her back in the hospital when she was five weeks old. It was so much more than just feeding problems; our worst fears became reality as my intuition was proven correct. Over the next three months we found out that our precious baby was missing her corpus collosum (the mass of motor neurons which connect the right hemisphere of the brain to the left hemisphere), she was blind, she was hearing impaired, her liver was enlarged, only two chambers of her heart were working and it was also way too large. None of her muscles were functioning properly, including those of her mouth, throat, and gastro-intestinal tract. We had a g-button placed for feedings since she could no longer swallow and we started testing her for any known diseases which fit her profile. Every test came back normal. One doctor said that everything was normal except for the patient. We were told whatever Laurel had appeared to be progressive, and they did not expect her to live to be six months old. We took her home when she was four months old, on comfort care, just to be loved with no more poking and prodding, for the rest of her days.
Laurel passed that six month mark, and the happiest day was when she learned to smile at seven months. Slowly, with daily physical and occupational therapy, she learned to roll a little, move her arms and legs a little, and lift her head just a bit. Smiling all the time, crying only very rarely. She was my baby. I spent so much time caring for her, working with her, and loving on her because I knew our time was limited. Our other daughter, just three years older, seemed to understand all this. She became Daddy's little girl and Mommy's helper, but she knew my job was mainly to care for Laurel. We celebrated greatly on Laurel's first birthday. We rejoiced on her second birthday. On her third birthday we were elated.
After her second birthday she had progressively started losing the skills she had worked so hard to gain. By three years of age she could no longer move her arms or legs, she did not smile as much, she never cried, and she could not control her head at all. But all these changes seemed to stagnate, she stopped getting any worse. Geneticists now believed she had at least two, possibly three, diseases at the same time. Each one masking the symptoms of the others making diagnosis even more difficult. It was believed she had a primary mitochondrial disorder with something else secondary. And the best news came with this, that Laurel might live to be an adult, at least a teenager. We were so happy.
On Sunday morning, October 19, at exactly 3:00, I woke up in bed and knew that something was wrong. My husband was on duty with Laurel that night (we did not have nurses on weekends) and after a minute I heard his footsteps hurrying down the hall towards our bedroom. He said he wanted me to check Laurel, something did not seem right. I raced downstairs to her bed in our den, and tried to hook up the pulse ox machine to check her oxygen level. The probe was always tricky and I couldn't get it to pick up right. I watched her chest for breathing but I couldn't see it move up and down. I grabbed a stethoscope and put it on her chest and I think I heard one or two very slow heartbeats. I did not want to spend another second assessing her because I knew in my heart she was leaving us so I ripped the stethoscope off my ears and unhooked her from that pulse ox machine and scooped her up in my arms. My husband was standing across the room from us, crying, saying "What's wrong with her?" and I told him to come over and hold us because Laurel was going to Heaven right then. We stood there, in our den, hugging our precious baby between us as she died in our arms. After a minute we sat on a loveseat with her and wrapped a blanket around the three of us to keep her warm. I gave Laurel to my husband to hold and I went upstairs and to tell our six year old that her baby sister had died. Our family, as we knew it, sat on the loveseat one last time all cuddled in that blanket. We talked all about Heaven and who Laurel was meeting right then, and we told her over and over how very special she was to us and how much we loved her. We cried and cried.
Hundreds of people came to her funeral, and everyone wept. We buried her over a thousand miles away from us, in the same plot of land where her great-grandfather is buried, and where her grandparents will be. She has family all around her, but it is so difficult for us not to be near her grave. We know it was the best decision in our heads, but our hearts ache for her to be closer.
Laurel has defined my life for the last 3 1/2 years. First and foremost I was Laurel's mom and caregiver. We bought the house we have because of Laurel, I drive the van I have because of Laurel, I have the friends I have because of Laurel, and now I don't have my precious Laurel. Everything is a reminder of what we have lost, and we miss her so much. The emptiness is overwhelming.
You can send email to Nancy at: [email protected]
anniversary date 10-19-97
date of post 03-02-98