Oh bless your heart. I can't fathom your loss. My son was in the NICU 92 days, and even with a good outcome, it was exhausting. Even the losses that we witnessed in there still stick with me... those precious babies' faces.
Another thing that you said resonated with me, about your husband's fear of losing not just a child, but you too. My husband did lose his first wife. They were high school sweethearts and she died at 24, the picture of health, then sudden spontaneous liver failure. Of course he was shattered. I'll never know how he felt when I went into HELLP and the MFM told him that my liver had shut down and started talking about possibility of transplants if it didn't "wake up" (his wife died in the air ambulance on the way to receive a transplant). Friends and family at the hospital said they didn't recognize him. He had this ashen face. No one knew what was going on except him at that time. I, on the other hand, didn't know how sick I was. He put his fears aside, showed me pictures of my son, and told me that we were both doing great (GOD BLESS HIM). I was so in love with my son, and in so much pain after surgery, but I made sure I told him right then that I'd go through all of it 10 times over. He was like, "ok sweetie, you're pretty doped up right now, go back to sleep."
I was blissfully ignorant then. But I'd still do it 10 times over, even after all the research. I'm one that finds knowledge comforting, and unknowns terrifying. Just give it to me straight. I kept my husband in the loop with significant things I learned, and he visited the MFM with me for a talk about trying again. For us, those things were helpful. This forum has also been incredibly encouraging. It puts real people's experiences behind the statistics. Hindsight is 20/20 too... we now know the signs, we're more involved in our care, and we trust our doctors. I believe they're not going to let things get so bad that my life is in danger. After a couple years, we decided that the benefits outweighed the risks. Everyone is different though. Be gentle with him.