I couldn't leave this unanswered. For background my son was born with DS and another medical problem which meant NICU and an op within his first 3 weeks, I also had two other youngish children at home. When I look back now, it seems hard to see how I managed without going a bit mad.
What helped me was I did acknowledge that I was in difficult circumstances but I couldn't just cave in, so I sort of filed it away in my head and only viewed the whole picture at night, when I was alone. I would then mull it over, cry and sleep a bit. Then each day, at first I was in hospital with my son, I wrote a list of what needed to be done; so talk to consultant, eat lunch, express milk, deliver milk to NICU and sit with son, phone daughters, make sure they were up to date with school stuff.
I did this when we got home for weeks after too, it really helped with staying calm. Could you just list all your big worries and then do a daily list, ie what needs to be done today to get through and do this each day until you get to the appt. I do think being medical makes it worse as you will be in overdrive imagining things.
I do think it's good news that the consultant has said to see you in a little while, in my experience of me and our friends is that urgent problems are called in very quickly, either that day or 24 hours or so. I do think it sounds a bit less urgent, although very worrying. My son also had little holes on his heart which closed unassisted after a year of monitoring.
Don't google and scare yourself!! I'm wondering if you're putting the facts together and jumping to a syndrome because of your nursing experience. Surely consultant would have mentioned if they'd seen lots of markers?
When you've had the appt, post in Special needs boards as much experience of additional needs and health problems.
Good luck xx