1 0 24-03-2017
  1. #SpoonieSpotlight In September of 2015 , my fiance and I found out we were expecting our first child. We quickly became excited but that excitement was short lived. We went to our first prenatal appointment and after an ultrasound we quickly learned that our baby was not developing properly. She was diagnosed with Cystic Hygroma , which is where the Lymphatic System doesn't develop properly and when she would take in Amnotic fluid she would not be able to release it through her urine, it was building up behind her neck. After a few appointments with specialists a Kosiar Children's Hospital in Louisville, her diagnoses was confirmed and we were told she would not survive past 18-20 gesgation. Given the most painful news someone could be given about their child ,I choose to celebrate and cherish every day I got to be with her, and for that I developed a very special bond even though we never got to meet while she was alive. I felt like I had known her for years. Nothing could be done for her and that was the hardest part , eventually knowing she would pass away inside of me. I was asked many times to go ahead and terminate and I refused . My faith and the love for my child would get me through, I couldn't take my child's life just because she wasnt given a good outcome . She later passed at 24 weeks, which was the hardest day of my life. 36 hours of labor and she was here. Although that was the hardest thing I had ever done , I got to meet my hero. She is the strongest person I know, she fought longer than expected . She is the most beautiful thing I have ever seen. She has changed my life in ways you cant imagine . Every month I pay it forward in her memory in hopes she can touch other people's life besides mine. Her name is Greyson ❤ #CysticHygroma #Premie #Lymphatic #NeuromyelitisOptica #TransverseMyelitis #PTLD #BehcetsDisease #PosturalOrthostaticTachycardiaSyndrome #Cancer #MedianArcuateLigamentSyndrome #

Top