This is just an email I sent out to my email group Hope for children with HLHS. I thought I would put it here as well, to share a little more of the hard things I face every day.
I hear you,I cannot explain to you what I felt hearing that my 4 week old son is going to have to undergo an unplanned procedure. we leave first think in the morning to go to Sick Kids in Toronto. We will be going back into hospital only 11 days after discharge. I am thankful they found this problem before it became just that...a problem. Its just my first time having to face a procedure that wasn't in my plans. I know there are three surgeries... but what about all the issues that arrise between them as well? i am lucky as he is my first, and luckily don't know any different. Even though I don't know what its like to have a HH (heart healthy) child, I still am mourning what should have been. I love Yale with all my heart, but the knowledge that he could leave us at any moment is so tormenting. All we can do is live day to day, and enjoy the blessing that we have, while we have them.