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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.

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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.

hospitalcheyenne

 

You Are Not Alone Pretty Girl Blues

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  1. Amy says:

    What a beautiful wee soul. Stay strong. X

  2. ivana says:

    Wow what an amazing little girl you are and have been all your life. you are an inspiration to a lot of people who hear your story of courage and resistance. Continue your journey to health and remember to never give up and reach out for help whenever you need it!

  3. Wow! She is such and inspiration!!! ROCK IT OUT GIRL!!!

  4. angela says:

    She is truly one of my heroes. …. its an honor and pleasure to know this miracle girl personally!

  5. Tiffany says:

    I can see from the pictures that she’s a little spark plug (good thing)! Cheyenne, you keep being you and being awesome!

  6. merryme says:

    Thanks for sharing the story of this gutsy girl and all she’s been through. I think she’ll show you how and when to let her go and when to keep her close. Blessings to you all

  7. Kathy says:

    Good on you Cheyenne………. You make us big girls very proud and make us realise even more so we can face every day with a smile on our faces and a bikini on our beautiful bodies…….

  8. Lisa says:

    MY HERO!!!!!! XOXO!! You make me proud and YOU make me want to keep fighting!!!

  9. Michelle says:

    I have had a j-pouch for 16 years and it no longer works properly so now have to think seriously about having major surgery again…..I have been very reluctant and very scared BUT reading about this beautiful brave little girl has made me realize I have been silly really…..I admire this gorgeous little beauty…..and what a MUM you don’t realize how much you and your previous daughter have helped me :-DTHANK YOU with all my heart xxxx

  10. Shanna fraser says:

    I am an Ostomy nurse and you my dear are inspiring! When my adult patients refuse to empty their own pouch, I may just have to tell them about you!

  11. Jan says:

    For such a brave little fighter, the only thing I can add to what has already been said,is, God has made you very special for a very special reason. You are making other people braver and you make us SO proud of you. You have a very special, and lucky mummy, to have an angel like you.

  12. Kerrilynn says:

    This little girl is so incredible! Thanks for sharing her story.

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