As you may have noticed, I've added some links to the sidebar here. I had posted a link to this blog to a Yahoo group on CHDs, and found some great resources through some of the other families that contacted me, which I appreciate tremendously.
Perhaps most exciting was finding blogs by the parents of two other little boys, Joshua and Tyler, with HLHS who had their surgery at UCSF performed by Dr. Azakie. Both of these little guys had a tough recovery from their initial surgeries, and both faced life-threatening complications. But you would never guess that to see their pictures today. I e-mailed Joshua's mom to thank her for her blog, and she immediately sent back a really wonderful response and gave me her phone number and said I could call any time. Tyler's parents wrote a really detailed account of his first surgery (which can mostly be found here) which was incredibly helpful, because I had a lot of questions about the timing of things and at what points we would be able to have physical contact with our baby, etc.
Another website I came across was Inspiring Hearts, which tells the stories of adult survivors of serious congenital heart defects. None of the people profiled here have HLHS, but it is pretty amazing to read about the prognoses some of these people were given as children, and to hear how well so many have done, and how rapidly this field has advanced in the last 20-30 years. Here's hoping it continues to advance at that pace.
2 months ago