On Thursday August 21, 2008, at 9:51 pm, I gave birth to a beautiful baby girl. She weighed in at 5lbs, 7oz and was 17 and 1/4 inches long. I had a wonderful pregnancy with no issues. Even the ultrasound two weeks prior to her birth was normal with no signs of any problems. I was so excited because I had been trying for a few years to have a baby. I named her Skiyla Reign. When she was born, it was the most beautiful, exciting day of my life. Then in an INSTANT it was the worst nightmare I had ever been thrown into.
My little angel was born with CDH, short for congenital diaphragmatic hernia. (Basically, it was a hole in her diaphragm that allowed her bowels, spleen, and intestines to move into her chest and caused her one lung to collapse and her heart to be pushed to the opposite side of her chest.) The doctor said to me, “Your daughter has a 20% chance of her living through her first 48 hours. I’m so sorry.” I took that 20% and prayed and called family and got prayer chains going all over the world. Friday night we were up to a 40% chance, and on her 6th day of life with my mom and dad there for support, we waited while they took our baby for her first surgery to close the hole in her chest and put all her parts back in place (her large and small intestines, bowel, and part of her spleen). On top of having the hernia, she also was born with sacral agenesis (without a tailbone) and imperforate anus (without an anal cavity). She had three more surgeries, one to give her a G-tube with a Nissen fundoplication to keep her from throwing up what she eats. And she had surgery to repair her imperforate anus (she was given a colostomy bag for two months but only until she healed and started dilations). These were all done before leaving the hospital at 4 months old.
We were in and out of the hospital every two weeks after her discharge for low weight and recurrent urinary tract infections (she stayed at 11 lbs. for two yrs.). At 16 months old, we went in for a two-hour surgery to remove two kidney stones and have ureteral reimplant surgery and her ureters straightened. (She had stents in for about two months for that.) It took SIX hours because the doctors had to move around her unusual organ placements.
My point to all of this is that I could have just given in the day she was born and said, “OK, let me just say goodbye to her” and left it at that. But I kept strong in the faith that God is in control. (I actually told the doctor who told me her diagnosis, “I believe in God and the power of faith and prayer. She will be JUST FINE!”) We recently had to endure moving and dealing with new doctors and diagnoses, adding scoliosis and spina bifida to her already long list of diagnoses. Due to her scoliosis, Skiyla gained a back brace she called “Charlie,” which was pink with lots of butterflies. So the day she got “Charlie” she said, “Look, Mama, now I can fly.”
With all the ups and downs I have gone through and the sleepless nights and the nights of waking up just to make sure she was even breathing. I have to say that I wouldn’t change it for ANYTHING because having Skiyla has brought me pure joy. Having seen her beautiful smile and hearing her laughter was a true gift from God!!! I believe with having an amazing family and awesome friends and with tons of faith and trust in God and many, many prayers you can get through anything. This journey hasn’t always been the easiest, and I have had my emotions, both high and low. But I would do it all over again because having a child like Skiyla is amazing. She is one of the strongest people I know. She was and is and always will be my hero!!!!!
Skiyla developed a bowel obstruction at age 4 and had to have 1/3 of her intestines removed, but after the surgery she had serious complications. God, knowing the pain she would have to endure, showed his mercy on January 31, 2013 at 10:28 pm and brought His angel back home to be beside Him.