cystic hygroma at 26 weeks

I really want advice from someone who has been where I am.....

I am 26 weeks pregnant with our 3rd son, Nathan, who has Ds. I went for an echo yesterday to have a pediatric cardiologist check Nate's heart. He found a small to moderate VSD, (hole between the ventricles), and talked to us about how this wouldn't effect the rest of my pregnancy, labour or delivery. I felt ok. From what I have heard from the moms on the boards these holes can be fixed almost routinely.

So I was doing alright, then I got a call from my Ob to follow up on the echo results.... apparently Nate has residual cystic hygroma, as I am now in my 3rd trimester this raises the red flag for hydrops. From what little I have read this is a devastating dx. We now have to wait and see, they are going to do another US in 4-6weeks, to check if the cysts are still present and to see if there is any evidence of hydrops.

Has anyone got any experience with this? And please say a prayer for my precious Nate.

Thanks in advance, Rachel