So, I talked to the cath surgeon and cardiologist today. They both felt that the initial evaluation from Halloween’s cath was correct. Dr. Wax, the cath surgeon, spoke with a colleague at Cleveland who reviewed Ramona’s angiograms and also concurred. He is still waiting to hear from another colleague who is out of the country.

So this is where things stand: Ramona will no longer undergo early, frequent interventions. The benefits are “uncertain” and the risks too high. Instead we will wait until her sats fall into the low 70’s or so and then reevaluate what might be done. There is no consensus on how long that might take. The cardiologist said that although her arteries have “grown significantly” since her first surgery, they are nowhere near normal and she “without a doubt” will not qualify for the full repair anytime soon. She also indicated it was unlikely she would ever be a good candidate for repair. Dr. Wax and his colleague both agreed that this was one of the “worst” presentations of this heart defect that they had seen.

None of this is entirely new information for us, but it is still hard. I’ve decided that since we have no idea how long Ramona might live we owe it to her and Simon to provide a home of hope and life. Although not one day passes that I don’t consider Ramona’s mortality, I hope that both she and Simon can pass many happy days without that specter hanging over them. And I have to constantly remind myself that none of us knows what time we may have together. It’s a good reminder to me to try and stay in the moment and enjoy my two little beauties for who they are today, not who they may or may not be in the future.

So after the holidays Andy and I will begin the process of soliciting second opinions. I trust our team at Children’s and do not expect to hear anything drastically different anywhere else, but you never know and I think now we’re at the point where it would be irresponsible not to ask around. Tomorrow Ramona turns two! I will post some pics of her smiling birthday face tomorrow, but for now here’s a shot of our last day playing with the leaves!

Thanks for your prayers and notes and comments, they mean a lot to me…