Emi Undiagnosed: Can You Help?

Emi was born on 7/17/13 with her intestines in her umbilical cord.

We were told it was omphalocele, I was a patient at a high risk clinic due to being diabetic. And she was never diagnosed with any problems. She had surgery the following morning in Lubbock TX. During surgery they found her intestines were not connected and her stomach was on the opposite side. 

She had bowel reconstructive surgery at seven weeks old. Due to a tear on her small intestine, her intestines shut down. She acts like a short gut baby but is not. She has been tested for cystic fibrosis five times. (And she does not have it.)
At her year old check up her then doctor told me that she looked like a normal baby and he didn’t believe she made it this far. He had seen babies with less complications than her and they did not survive. But I knew my Emi was a fighter! 
She is now two years and eight months old and we had hospital stays the first year and a half every month up to three weeks at a time. We were told she was was not able to absorb her food and was unable to thrive. She had severe diarrhea at times that she would become acidic. She was three months old and was at her birth weight. We were then placed on TPN for 8 months until she got an infection in her line that had gotten into her blood stream.

I asked her GI if we could possibly try to feed her and see what milk supplement we could give her. We went through nine different formulas. And have managed to get her to 25 lbs. We have pancreatic deficiency where she takes creeon up to 6 capsules a day. She has always had slow weight gain but as long as she doesn’t lose weight we are good. She has a B12 deficiency as well and takes injections once a month.

She now suffers from chronic pain and her intestines have spasms and contracts. We do not know why and have been told this is just her life she will hurt like this. Her stomach gets distended for long periods of time and makes it hard for her to breathe at times. We have days and nights of constant crying 2-4 times a week. 

This has been going on a year and a half. She was on milk supplement pediasure, peptide, boost, and as of a month ago has refused all milk and most food. We have never been given a diagnosis for her condition all we have been told is she is “rare” and have not come across a baby with her “type of issues.” 

Her GI doctor has basically told us he just doesn’t know why she’s hurting. Fort Worth told us the same. We just don’t know what else or where else to go with her. I decided to start this page in hopes of finding other families that have children with similar issues. And to ask to please continue to pray for Emi, her comfort and our family.

If you have any clues for Emi and her family, please visit them here.