27/01/2023
Welcome, I've had so many people reach out wanting updates on James and asking if I was willing to create a page they could follow to keep updated on our little warrior! So here is it...
If your unfamiliar with James and his story, here is our story and journey so far..
While pregnant, during one of my scheduled ultrasounds the tech asked me to hang tight so she could update the physician. While I sat and waited I knew something wasn't right.. after what felt like hours the physician came in and told me that James has some complex issues. Heterotaxy, being the obvious issue (heterotaxy is a very rare condition where many organs in the body can be formed abnormally, in the wrong position, or even missing) James' stomach was on the wrong side of his body, his liver was midline, and they didn't believe he had a spleen. He then proceeded to tell me that they also saw some serious issues with James' heart. From there we had extensive testing which confirmed the Heterotaxy diagnosis and James' complex heart issues, which include DORV, malposed great vessels, and pulmonary atresia. When James was born he was rushed to the PCICU and underwent his first open heart surgery at 5 days old. All went well and as planned with the surgery however, his post-operative was complicated by NEC (and very serious infection of the gut that can is caused by being intubated for a longer period of time). After a long 8 weeks we were discharged home. Since being home we have been admitted back 5 times due to complications/viruses.
James is scheduled for his second open heart surgery (where our surgeon will upsize his Shunt and do some work on his pulmonary vessels.. which is ultimately the same procedure he at at 5 days old). This will allow more time for James to grow, get larger and stronger before his "Total Heart Repair.. It's not certain how many OHS James will need but we are only hoping 3.
This journey hasn't been easy but we are SO thankful to have James. He is the sweetest and happiest baby despite his complex issues.
We would love for you to follow along with us on this Journey with James. And we ask to keep him and our family is your prayers!
