I'm so sorry for what you endured, Ashleigh.
Perhaps looking at photos and hearing from those who were there may help you fill in the gaps of what you missed. I hope that time will ease your pain.
In my case I lost three naturally conceived pregnancies (always after two good u/s with a h/b when the placenta is supposed to start supplying blood to the babies) and then since I was 41, was convinced that "old eggs" were my problem and so that I needed to move on to doing DE IVF (two RE's had told me this but it took me a while to accept it.) I couldn't help but think something else must be causing my losses but all the experts said that DE should solve the problem.
However, I did consult an RI who recommended a host of expensive tests so I took his list to my RE and asked him, "What tests, (if any) on this list have merit?" He told me that I should get tested for APA, ANA, and NK Count and when I came up positive for APA with elevated NK Count he told me that these results meant that I should inject lovenox, a blood thinner, daily while pregnant to prevent microclots from forming which, he said can kill a baby. To suppress my NK activity he said I should take low dose prednisone, a steroid, daily during the first trimester.
So with my DE IVF achieved pg at age 44 (after two prior attempts to do a DE cycle had to be cancelled prior to retrieval due to problems with the donors' health histories and/or response to stims) I did both. We asked my RE to transfer only ONE embryo (to avoid the chance of twins which due to a fibroid, I had decided would be too high risk for me) and that single embryo "took" and I had a blissful, easy pregnancy until two weeks before my due date when my OB instructed me to cease the lovenox injections I'd put myself on. Two days after ceasing lovenox my liver began to rupture and I had to be rushed to the hospital for an emergency C-section. After the C-section I suffered a stroke (caused by the most severe class of HELLP Syndrome) and I ended up in a month long coma. I needed brain surgery, a tracheotomy and $11,000 in blood transfusions. Ultimately, I spent six months in hospitals and missed out on living with my new DD during that time. Although my husband brought her to visit me in the hospitals I have no memories from these months due to the brain injury. My first memories date from six months after my daughter's birth when I lived in residential rehab and wept each night because I longed to return home.
I battled short term memory deficits for a while but thanks to 18 months of cognitive therapy have made such a good recovery that my short term memory has now returned to normal. However, I will probably never get any memories from those first six months back...that is time I completely missed out on spending with my baby, a loss over which I will probably forever grieve.
I would LOVE to talk to other mothers who have suffered HELLP. I tried to start my own in-person support group for HELLP Syndrome survivors that met in my home in Sherman Oaks, CA, but only one other woman showed up and her story differed so greatly from mine that it was as if we suffered completely different illnesses.
Obviously I am not allowed to carry another pregnancy. (Never mind that at 48 I consider myself too old, the risks of getting HELLP again are too high.) Recently, we made the decision to donate the frozen embryos from our DE cycle to medical research, a decision that was difficult for me (I had paid for one more year of storage without telling my husband) but I've finally accepted that the embryos may do someone else some good. I am sorry, of course, that I can't carry again as my pregnancy was one of the happiest times of my life. My daughter and I truly bonded during that time.
Though she did not hear my voice until she was three months old (since before that I could not speak) when I did finally speak again I'm told that she clearly knew my voice, turning to find me no matter how far away from me in the hospital room she was, no matter whose arms held her. I had to go through so much to bring her into this world and though we don't share genes our bond is tight.
I look at photos of my DD and me during that time and I read my husband's blog that he created to keep our friends and family informed and I try to focus on what I have NOW with my daughter rather than what I lost because there is nothing else for me to do. I'm very sorry for what you suffered and wish you a happy, healthy future. Good luck to you!
P.S. I have medical questions for any medical experts out there: could anything have been done to prevent me from coming down with HELLP? and did ceasing lovenox cause HELLP to hit? Did lovenox protect my baby who was born healthy (unlike so many other HELLP Syndrome babies?) Thanks ahead of time.