In 2011, my youngest was born, Izzy and within days of her birth we found out that all was not well. She had a heart murmur so loud you could hear it with your bare ear. She had an EKG and echo in the hospital and we had a visit from a cardiologist on a Sunday to tell us that she had a large VSD and a moderate ASD and that while he hoped they might close on their own, it was possible she would need to have open heart surgery. In time, we also learned that she had a second superior vena cava that came in from the left side--however, it doesn't really effect her because it is hooked up to the same chamber as the one that comes in from the right. I am told that typically the two fuse together to form a T-shaped vessel but for some reason hers remained separated. She also developed stenosis in her right pulmonary artery.
Within a few months, she went into congestive heart failure and that was managed with medications for several months to give her heart more time to close up its holes on its own. Her ASD did begin closing but that VSD wouldn't budge and when her heart began to enlarge and she became failure to thrive and fell off the growth charts, it was time for surgery.
On April 19, 2012, we handed over our baby to the head of cardiology and began the long wait to hear she made it through ok. Her recovery had some rough patches but overall she did great and was soon home again, growing and getting stronger and being a mostly normal baby and toddler.
Our journey does not end there, however--just recently she was diagnosed with epilepsy as well and takes daily medication to help prevent seizures. We are also working with genetics to find out if all three children have a genetic condition since all of them have various related issues that our geneticist feels are inherited.
With the boys, we are dealing with ADHD, sensory processing issues, anxiety, to name a few. Iz shares some of these. We recently began working with a neuropsych who is helping us pin down diagnoses so we can get everyone going in the proper therapies and services. I am actually quite excited by this development as the information from the neuropsych will really help us with modifying the boys' IEPs to give them the best chances at a successful school year :)