As written by her mom, Stella.
When I was 22 weeks pregnant, during a routine ultrasound, the doctors noticed that Jordyn had an enlarged bladder. She was emptying but not fully. From there I was referred to the University of Tennessee Medical Center as a high risk patient. At 37 weeks pregnant, I was induced and I finally got to meet the biggest inspiration of my life, Jordyn Aláni Hall.
She spent no time in the NICU. We were then referred to see a urologist at East Tennessee Children’s Hospital. We were then told that due to Jordyn’s discomfort from not being able to fully empty her bladder, she would need to be cathed 4 times a day. I had also noticed that Jordyn’s belly was unusually large. She had been having issues pooping and stayed constantly full of gas.
In August 2018 at 2 months old Jordyn contracted a UTI and was vomiting and her belly was more distended than usual. We spent 6 days in the hospital and was released to go home. Doctors were confused. Tests were coming back all negative. At this point, nobody knew why these things were happening.
In late September Jordyn contracted another UTI. By this time she was vomiting again and not keeping down any formula. She was 3 months old and weighed only 8 pounds. You could see her ribs. I was visited in the hospital by a GI specialist and he insisted that the best thing for us to do would be to place a central line, an ilieostomy, and a feeding tube. He stated these things would make life more comfortable for her. So of course, I said yes. I felt we needed to do this for her because she was feeling so much discomfort and she wasn’t as happy as she needed to be.
On October 2, 2018 Jordyn had her surgery. I remember when she came out I was so scared to hold her because of all of the things she had on her. I looked at her and the first thing I noticed was her belly had gone down. It almost looked normal. A doctor had suggested that she may have MMIHS and she had been tested back in August but at this point, we still hadn’t received any results. We spent close to a month in the hospital. We finally got to go home but this time we were leaving with a lot more things than she had before.
We found out later that month that she does have MMIHS. Hearing that, after all the horror stories I’ve read, devastated me. Jordyn is now on TPN 20 hours a day and on continuous feeds through a G-tube and still has her ilieostomy. She is still taking formula orally as well. A nurse comes out to our house once a week, physical therapy once a week, and occupational therapy once a week, and we also still see her GI, Urologist, and pediatrician.
I was devastated at first, but when I look at her, she is so much happier and coping very well. We have more good days than bad days and she is a huge inspiration to me. This is the strongest baby I know. We are taking things one day at a time.
She has is now 6 months old and 12 1/2 pounds and is continuing to grow. I stay positive because I never thought she would be doing this well.