Jazzman and Miranda Eastman
Our twin girls Jazzman and Miranda were born October 27th at 5:10 am and at 5:12 am. We knew one month before the girls were born that they were missing the front lobes of their brains. The girls were born two months premature weighing 2lbs 12 oz and 4lbs 7 oz. They were small but the doctors thought they would be ok if they made it. They both had poor feeding and had gastronomy tubes. Miranda came home before Christmas but Jazzy stayed in the NICU for five months. In June she got Pneumonia and on August 23, 2006 she had open heart surgery. She came through that but while in the hospital they did the test for ZS, which came back positive. So then they tested Miranda and again there was the wait. I was so sick of all the doctors poking my girls. Then Miranda started having very severe seizures, some days they were unrelenting and the medicine didn’t even help. I have eight natural children, all healthy. I prayed they would be wrong about the girls because they had been through so much and done things the doctors said would be impossible.
We lost Jazzy on September 23, 2006. She stopped breathing and I called 911 and started CPR. They took her by Life Flight to the hospital but during the flight she left us to go with the Angels. Mimi celebrated her first birthday and I held hope still that they were wrong with her diagnosis because I could see how she fought. We had a Hospice team coming once a week and on December 21st, 2006 she started to bleed. I stayed up all night doing as many things, last things with her, that I could to help her and be with her. She opened her eyes on December 22nd, looked at me, and took her last breath in my arms.
I share their story because only families who have children with ZS have any clue how I feel. I still feel very angry. I often wonder what they would look like and what they could be doing if they were still here. Most days I get through because of my other kids and the busyness of housekeeping, but my nights are so hard. Sometimes I wake up thinking I can hear them crying, but if I go to their bed they are not here. It feels like it was only yesterday that they were in my arms. I miss them so much.
