“Today is Aiyana’s 100th day in the hospital in her short, almost, five months of life. Her two-year-old sister Leilani and I started Aiyana’s life with seven weeks in the Children’s Hospital of San Antonio’s NICU, after Aiyana was air flighted on day three of life from McAllen, TX. After discharge, we spent six difficult weeks at home, before another air flight was needed to Dell Children’s Hospital in Austin, TX. We’ve been here seven weeks, so far. Thankfully, we have found a medical team here that believes in Aiyana, but it hasn’t always been that way. She has had countless people along the way dismiss her right to existence and proper medical care because she was born with a rare and medically complex genetic disorder called ‘Trisomy 18’ or ‘Edward’s Syndrome’.
Evil Queen I’m not bossy I’m the Queen shirt
It’s been an unexpected and extremely difficult year. Life as I knew it has imploded and unraveled around this diagnosis, but I continue to fight for Aiyana’s life because I believe in the core of my being that she has a story to tell and purpose to uphold. She shouldn’t be alive right now, according to the life-limiting T18 odds and statistics stacked against her, but she continues to defy it all and push forward, shocking everyone and changing the hearts and minds of everyone she comes in contact with. We’ve learned that T18 is a spectrum, like Down’s Syndrome (Trisomy 21), and that each child needs to be evaluated and cared for individually, not as their diagnosis because they don’t all do or act the same. As long as she has fight in her, so will I.
Anime Cowboy Bebop directed by shinichiro watanabe in pulp fiction see you space cowboy shirt
‘…What’s the point? She’s going to die anyway,’ the neonatologist said. That’s what I overheard the neonatologist assigned to Aiyana’s birth say in the corner of the room, while I was in early labor Aiyana. I was laboring alone, my husband and I’s marriage in shambles at that point, with my doula and midwife present. It was the complete opposite of the Bradley Method, unmedicated, almost entirely home-birth with my husband doting on me that I’d had birthing Leilani, a year and half prior. But I was convicted that Aiyana deserved a chance at life and I wasn’t going to let any negative or ill-informed doctor affect her in any way. So, a medicalized birth it was to ensure her life safely.
Mickey Mouse and Minnie Mouse Disney and camping Kinda Girl shirt
The fear, loneliness, and anxiety I felt during those 30 hours of labor was soul shaking. It was miraculous that she had made it to 39 weeks as an intrauterine growth restricted T18 baby with severe brain and heart issues, despite the statistic that 85% of babies with T18 pass away in utero or are stillborn. Was she going to be one of the rare few to be born alive and the even rarer few—less than 10% of those born alive—to see her first birthday? At 2:23am, on September 21, 2018, my 4lb. 13oz. living unicorn was born, with a full head of hair and a palpable will to live. There wasn’t a dry eye in that delivery room, including the neonatologist.
Không có nhận xét nào:
Đăng nhận xét