Having learned it could be Heterotaxy was interesting because in some cases it affects the heart and your organs mirror your heart. The placement of CJs heart was to the right and it had all the pieces but they weren’t In the right spot... (more on that later) we had routine check ups and only a few bumps in the road.. never with CJ he was happy as a clam and safe in utero. I had an episode of passing out and blood pressure going nutty. In the end I was put on partial leave at work because my blood pressure was not good.
We planned on a c-section October 14th 2008... normal delivery wasn’t an option because the plan was CJ May need to go right to surgery.
Well CJ was an amazing baby. He surprised the whole medical team... we had quite the crew in the operating room. CJ seemed to adapt to his condition meaning he was born at 10 pounds .. was in the nicu because of his heart condition. He was able to stay on room air and just monitored. His cardiology team was beyond impressed. Now his condition is a 1 In 10,000 and no one knows what causes it but it does happen in the first 8 weeks...I learned to be a mama bear in this time. CJs condition was complex as the nicu team said they had never seen a complex case such as this and would need to go into the medical books to find such a case. This wouldn’t be the first time or the last time we heard this...So many questions asked of our family histories and medical back ground. My one fear was did I cause it because I was very sick right after we found out I was pregnant with a bad case of bronchitis and a fever... I was assured that wasn’t the cause. They wanted to do genetic testing and even after saying no I found them visiting CJ in the nicu... nope not gonna have it because in the end it wasn’t going to change his condition . We did have certain tests run. In the end he had Heterotaxy with dextrocardia, double outlet right ventricle, complete attioventricular canal, mild pulmonary stenosis, midline liver, midline stomach, asplenia and malrotation of the intestine. Like I said complex! He would be on prophylactic antibiotics for life because he didn’t have a spleen...(yes as babies and children you need one because they help with immunity..who knew ?!) As I said your organs mirror your heart so because his heart was on the right side versus the middle of chest his stomach and liver also shifted to the right... who even knew these these things were possible?! The exciting day came where we were released from the hospital... with lots of follow up appointments.
More tomorrow ...
