|CHD Awareness shirt from Zazzle.com|
My fellow heart-moms, I have to say: you are a lifeline for me right now!! You've been there, done that, and have the t-shirt (and you're still going there!).
As I was reviewing comments from the past few posts, I got a lot of information that neither my husband nor I had heard before: about government and other assistance programs, about ways we can get help to make it through this crazy time.
And then I had the thought:
What else do you know that might help?
I'm not just talking about ways to get financial assistance, though if you know of ways above and beyond what has already been suggested (e.g., the SSI form for a child's disability), then I want to hear it. But I'm wondering what else you've gained in your experience that might be helpful for us to know.
I don't want to limit the scope of what is offered, but I'm thinking about anything in the way of the following: NICU survival tips, asking the right questions of your doctors and nurses, things that might have worried you at first that may have turned out not to be a big deal (or vice versa: things that seemed like no biggie but turned out to be important), things you wish you would have known and/or taken advantage of while your child was there. Anything like that. I know there is a wealth and variety of experience, so have at it.
What should we, or do you want us, to know?