Coping | Ostomy
On May 11, 2007 a beautiful little girl named Cheyenne came into our lives prematurely at 35 weeks, weighing a teeny 4 lbs. 9 oz. She was born with an extremely rare set of birth defects (200,000-400,000 births) called OEIS Complex. That stands for Omphalocele, Cloacal Exstrophy, Imperforate Anus, and Spinal Defects. She had surgery 5-12-07 with a full Omphalocele Closure and Stoma was created for her colostomy. She continued on with the first year of her life full of surgeries, hospitalizations, and was diagnosed with failure to thrive and severe GERD. She had a tethered cord repair (a form of Spina Bifida) that September, had Pelvic Osteotomies done in November, a bladder closure and half of a Hysterectomy in December. After that year she continued with failure to thrive with NG Tube feeds, and severe GERD, she constantly projectile vomited anything she was fed, and was only 11 lbs at 11 months. In April 08′ we knew it was time for her to have a G-tube placed and Nissen Fundoplication done for the GERD. After that all of her developmental delays seemed to really pick up quickly, and she began to THRIVE! By the time she was 3, she was ready to be potty trained and wearing underwear like other children her age, but with the form of Spina Bifida she has, she cannot feel or control her bladder/bowel movements, and while we had the colostomy, she was still constantly draining urine into a diaper. That’s when we decided to have the operation for a Ureterostomy for her to drain into and that’s when she really learned to become more independent, and if you can believe it by the time she was 4, she was emptying her Colostomy and Ureterostomy on her own. She’s had a couple revisions on both the Colostomy and Ureterostomy, and is actually getting ready for another revision on the Ureterostomy this February 13th as it isn’t draining well and causing a lot of kidney dilation, and pain. But everything she’s been through has made her the person she is today, and she has made ME the person I AM today. She’s like a ray of sunshine, and almost everyone she meets, she leaves a new spot of brightness on their hearts. The resilience she has to it all, and how strong she is through it all is amazing to see.
For a long time she felt alone, but we have slowly been meeting new people through Facebook groups and that has helped. All of the pictures of you ladies inspires me to help her push forward through this. I’ve always thought of helping her keep her privacy by not telling everyone about everything, but I’ve learned through a lot of you that that isn’t always the best way to handle it. As a mom I’ve wanted to protect her, but what she really needs is my approval and a little push of “Yeah girl, you want to wear that bikini? Then ROCK IT OUT!” There’s absolutely no shame in something that helps you live! That’s something to wear proud and show off for sure! Keep posting your beautiful bellies and keep smiling. You have no idea who you could be helping along the way.