In our research, we were able to find a lot of blogs out there of people who have similar stories. I found a very inspirational story at: www.alyjeansspecialheart.com/. It touched me quickly when I read their story of the level two ultrasound. It sounded so similar to my story and touched me. They had also decided to go to the U of M and had Dr. Bove for the surgeries. I made my way through all of the posts, mostly with tears in my eyes, and was so happy to see their family standing strong on the other side of all of this.
I decided to reach out to this special heart mom, Jenny, since she had been there and done that :) She responded to me so quickly and was able to just understand what we are going through right now. It helped. It is just so nice to know that your family is not alone in this.
Jenny also told me about a great organization called Sisters By Heart. It is a group of Heart Moms who send out care packages to newly diagnosed HLHS families. Just the idea of getting a list of things a group of HLHS Heart Moms recommended excited me, let alone an actual package of recommended things! I couldn’t believe that there was such a great group out there. You can check out their blog at: www.sisters-by-heart.org/, which has a ton of information on it that has already been very helpful to us!
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