Rainbow Reese

Rainbow Reese

This picture below is my sweet Reese Claire-Blue Crocker. She was my rainbow baby after years of infertility and miscarriages she my hope after the storm. She carried two middle names because we also lost her twin in utero who we nicknamed Blue since we didn't yet know genders. Reese came into this world on December 18, 2017 and I was the happiest mom alive. I had tried for so long to carry a baby to term and at 37 weeks 1 day we thought we had made it. I had this gorgeous little girl like I had always dreamed I would. 

Then at only 2 days old she seized and our world was turned upside down. We were transferred to a bigger hospital in the NICU where she spent 5 weeks, and we learned her diagnosis of Congenital Disorder of Glycosylation. It meant a lifetime of challenges for Reese but she was a fighter. And we left the NICU with her ready to fight for whatever she needed. We learned as much about her disease as we could, got her into a case study at the National Institute of Health, and raised awareness as much as possible.

Then one day she stopped taking her feeds almost completely, and she was small so she couldn't lose anymore weight. I put my fears aside and brought her to the hospital for a gtube placement. While at the hospital she contracted rhinovirus, and due to her condition she couldn't fight it. At one week in the PICU on April 1, 2018 at 15 weeks old she passed. My rainbow was turning back into a storm, and I didn't know what to do.

She has been gone for six months now and it hurts so bad. In our little CDG community when a new little gains their wings it feels like losing her all over again. There are about 3000 cases ever reported worldwide so our community is small, but we are strong. Reese was our first rainbow, and my wife and I will try for our next rainbow baby in the future. For now we celebrate our beautiful rainbow Reese and all the love she gave us, and all the life she showed us. My forever baby...

 

-Alisha C.

 

 

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