High risk Trisomy 18, My Story So Far

I received a positive result on NIPT for Trisomy 18 at 9 weeks with a PPV of 91; FF of 7.6.; Age at EDD 45 years. I am currently 13 weeks. MFM doesn’t want to see me until 16 weeks, and there are very few genetic counselors where I live so much of what I’ve learned is based on my own research. At the 12 week scan, NT was 2 mm and nasal bone was present, heart rate was normal. I was feeling pretty optimistic after but then I read the report on patient portal and there’s a pleural effusion (fluid in lungs) of 1.3 mm and edema of 0.9. My Obgyn is super negative about the potential outcome and not very informative. I know the odds are against us but I’d like to hear all possible scenarios and not just, “It’s not looking good.” We then spoke over the phone with a genetic counselor from Natera on Tuesday, she was a bit more positive and a lot more helpful. She said the effusion and edema are not soft markers and can resolve but could be a sign of a heart defect that may show up later which ultimately could be a symptom of Trisomy 18. She did say based on PPV baby has a 9% chance of not having Trisomy 18 which was refreshing since all I’ve heard so far is that there’s a 91% chance of Trisomy 18 and there’s basically no hope. I know she’s essentially saying the same thing but it felt nice to hear it phrased that way, like someone was actually rooting for me and baby. Now I am just waiting for my appointment with MFM on January 21st, hoping they get me in soon for an amnio and praying against the odds for a good outcome. I guess you could say I’m hoping for the best and preparing myself for the worst.