We found out today that we can get travel insurance for Lily's heart (and the rest of her except her tummy button). The button isn't really a drama as the new one she is getting comes with a "spare" that I can change myself if the first one becomes damaged. Worst case scenario I will have to put another NG tube down, but I can't see that happening. Maybe it would be a good time to make her learn to eat properly (just jokes!).
So, if anyone is traveling anywhere (including Australia), the Company is called CHI and I was put on to them via Harvey World Travel. We have up to $10 million medical cover so I think we will be ok! It is a huge weight off our mind - especially as when she was really touch and go in ICU we promised her that if she made it , we would take her to all the Disney parks when she's older (and all the Barbie dolls in the world - could be tough!). Thankfully I don't think she'll remember somehow.....
More info: WorldCare Assist
Not sure if the above company still offers this product but if you are looking for travel insurance please go to CoverMore Travel Insurance Services who offer travel insurance to children and adults affected by heart disease.