Easter weekend 2007 was the day we found out that we were expecting our second child. The excitement overwhelmed us as we went to Easter dinner ready to announce our big news. Everyone congratulated us as they made the wish for a little girl. They wished for the all American family for us. To include a little sister for brother Nikolas who would be five years old when his new sibling arrived.
My pregnancy progressed very normal up until my 20 week ultra-sound. Wow what a shock, July 19th 2007 will always stick in my mind forever. My husband, Nikolas, and friend Kerri went to our ultra-sound all excited to find out if we would add a girl or a boy to our family. That day little Cecelia would not show us whether she was a boy or girl but the ultra-sound did revile something none of us were expecting. As the tech did her measuring I felt the tension as she kept returning to the head and became very quite. As we met with the doctor he explained to us that the baby had hydrocephalus (Liquid on the Brain). I began to cry and do not think I stopped for two weeks. I began seeing a high risk doctor and undergoing ultra-sounds bi-weekly. As the time went by I researched and the more I learned the better I felt. Also during the bi-weekly ultra-sounds they determined that we were in fact having the little girl we dreamed of.
In September we made our initial visit to the NICU. Tears filled my eyes again as I watched a new mom being wheeled in to see her child for the first time. I could imagine myself in a few months. At this same appointment we had decided against doing an Amnio. The doctors were urging us to do this genetic testing to know if we would be facing other issue than just hydrocephalus. My husband and I decided together that it is what it is and we were going to think positive and enjoy the rest of my pregnancy.
We dove into decorating the new nursery. It was our release to the unanswered questions. We turned this little room into a pink and brown heaven. It was so much fun to turn our nervous energy into a work of art.
Finally the day arrived. Tuesday December 4th, 2007 we went to the hospital to deliver our little girl by cesarean. Cecelia Rose arrived at 2:11pm. She weighed in at 7lbs and was 18 ½ inches. I was nervous as they pulled her out of me. As I heard her cry I felt more nerves but then I saw the most beautiful sight. My little girl was just perfect. She scored a 10 on the APGAR. The next eight hours were like a dream. Cecelia was taken for a MRI to check on the hydrocephalus and taken to NICU for observation. All seemed well as we introduced her to her Brother and Grandparents. Then the dreaded moment hit as I laid her down to go to sleep. She turned blue. I was in shock as I watched the nurse revive our new baby girl. Within minutes she was breathing again and the nurse assured us this happens sometimes. Over the next few hours Miss Cecelia quit breathing four more times. On the fourth time the nurse noticed a twitching. The doctor determined that Cecelia was actually having seizures and ordered pheno-barb.
On day two, an ophthalmologist came in to do a routine eye exam on little Cecelia. The next words I heard will always remain in my thoughts: AICARDI SYNDROME. I had no clue what he meant but I didn’t think it was good because he walked right over to me and hugged me. I had never met this man and he was telling me to remain positive and that every case is different. All I could think is this must be bad. Over the course of the next week Cecelia was seen by many doctors but was not showing any problems. We waited in the hospital to determine if surgery would be necessary to remove the liquid on Cecelia’s brain. She seemed out of place in the NICU. It was determined that Cecelia did not need the surgery at this point and we were able to head home on December 12th, 2007~Day 9.
Everything went fine for a week when I noticed some twitching in Cecelia’s face. I thought she was probably suffering a seizure but I didn’t want to admit it to myself. I thought for sure that the doctors were wrong. Cecelia didn’t really need this medicine she was going to be fine. As I watched these twitches I realized my life had changed and would never be the same. For a week Cecelia suffered about 3 of these episodes a day. It was scary every time but as the days went on we became more comfortable at handling the episodes. On Christmas night all things changed. Cecelia stopped breathing during one of her episodes and I had to breathe into her mouth. She came right back after one breathes and there seemed to be no reason to take her into the hospital. Through out the night I watched her lay in her bassinet. She seemed so peaceful until 3AM when she started having seizures again. By 7 am she had suffered 7 seizures. At 8:30 we rushed to the emergency room. We spent the next two days in the hospital for observation and adjusting her Pheno-Barb.
Since that time we have been getting to know our little angel. Cecelia suffers from constipation daily. We are starting the process of a swallow test and GI’s to determine if she needs any different medications. Cecelia has a base line of 3 seizures during the day and 3 through out the night. We currently still only take pheno-barb. Cecelia is now 12 weeks old. She loves to play little piggy’s with her toes. She has not smiled yet but has a little twinkle in her eyes. Her eye lashes are so long and look cute as she blinks with excitement. Our little angel has changed our lives forever. We know we have a long road ahead of us but are ready for the challenge and pray for the strength and knowledge to care for our children.
09-22-2008
