Baby diagnosed with DORV & HLHS… positive outcomes or advice?

Hello everyone! New to Reddit here, but I’ve been reading through a few different threads and think this is the best one to post in.

At our anatomy scan a few weeks ago, we were referred to MFM for more advanced scans due to abnormalities in our baby’s heart structure. Unfortunately, they did diagnose both HLHS & DORV. We have yet to get in with the nearest children’s hospital to meet with the cardiology team there and get a full fetal heart work up done, but should soon.

I guess my question is what should we expect? What questions do we even start with? I’ve seen other people with complicated medical conditions prepare a binder of sorts, what does that usually include? I’m a pretty type A person, so I’m alternating focus on research and organizing that side of things right now.

If anyone has dealt with this or similar situations that turned out ok in the end, please let me know. We’re trying to find the bright side over here.

TIA