Thanks ladies. Her heart condition has gone from moderate to severe. This means she needs to go to the cath lab and have balloons inflated in the valves of her heart to widen them and will probably eventually need a valve replacement. Ideally they would like to wait a few months to give her time to grow and get stronger but the reality is she may only have weeks before it needs to be done. She will be regularly monitored by the IWK Heart Center, and they will decide when to do the procedure. We are so lucky to have an amazing children's hospital so close to us, and they are the best at what they do!
We are heartbroken that she has to go through all this. But we have decided to focus on the positive progress she is having and deal with the rest as it comes. She is feeding well and graining weight, every test other than the echo has been normal and she is getting stronger each day. Her cardiologist has been great. The next few years are going to have ups and downs, but once she gets through the procedures they tell us she should lead a very normal life.