Another doctor appt

Today we had another doctor appt and I am kind of a little worried about somethings, but lets start with the good.

Lexi is gaining weight, which is awesome. She looks good and is doing thing every 9 month baby should and a little more. Her doctor said she looks perfect on the outside. Well she is perfect in my eyes and will always be. She weights 18lbs 2oz, still not quite to 20lbs. She is finally on the charts for height, meaning before she was off of them she was so tall. And she still has a very teeny head.

So now with the worrying and I am told this is all normal for me to worry about, so I can worry away. Lexi's isn't getting any better and so now she basically has CHD (Congenital Heart Disease). Not that this wasn't what they were thinking before, but normally they give until 9 months for everything to heal. At 9 months things start to take a turn for the worse, meaning that she will start showing signs that she does have a heart disease. Hearing this makes me cringe, nothing more hurts than to think that I may have to go through exactly what I went through with Bob. My heart aches for my little princess. Has anyone else ever wished it was them instead of their child, because that is exactly how I am feeling? I want everything to be fine and to not have to worry. But everything that she does or anything that goes wrong, I automatically relate it to her having a heart problem. Like her sleeping more than she is awake, my boys NEVER did that. Or her eating habits or her running out of energy when she is playing or anything that might seem not right. The other thing that has me worried is that her pediatrician seems more concerned then her cardiologist. So now its time for questioning, do I switch her cardiologist to one who has been around awhile seems to know everything about it all or do I give this guy who is still going to school a chance? Do I sit back and wait for them to do something or press on for something to happen? I don't know what to do, I have never been in this situation. Bobs condition was so bad that we pretty much had no say in what was going to happen. The other thing is that Lexi can't talk and if she could, what would she want? I think she would want me to fight until its taken care of, I think she would everything to be done now so that she can live a normal life and so that she can't remember much of it. So how do I go about this is the question? Lexi is not getting better and she isn't too much worse, but she is worse. Its obviously not going to heal on its own. The cardiologists will wait until it becomes so bad that they have no choice but to fix it and I don't want that. So the appt on March 3rd that we thought would be a heart cath is actually going to be a sedated echo instead. I am hoping with some small miracle that the cardiologist will be on the same page with me and just want to fix her little heart and put me and my family at peace. I worry about every little thing, I am so tired of losing sleep over this, worrying about if it will be worse tomorrow or if things don't work out, I am just so tired of it. I am trying to find the strength to stay positive and focus on today, but I keep worrying about what could happen.

So if anyone cares to share the opinions on what I should do, please do, I am willing to listen to anyones advice, this is the hardest thing ever.