I've been thinking about this for awhile. What keeps overwhelming me and making me cry, "why?" is how long the list of defects was. I still can't understand how such a tiny little thing with so many, many problems could have lived and kept growing. I look back now at the betas and the early bleeding and think maybe if I hadn't taken the progesterone my body would have rejected this pregnancy very early on. I'll never know and I can't say right now if I will take the progesterone in the future. Anyway, here is the most complete list of Aiden's problems, starting with the actual diagnosis and probable cause of the defects. For some reason it is important to me to get it all written down in one place. No single report that we have lists everything.
chromosomal deletion 2q(35-37.1)
Arnold Chiari malformation type II (brain is sitting too low and going into the spinal chord)
Clenched hands (indicates severe neurological problem)
bilateral (both sides) cleft lip and palate
rocker-bottom feet and some kind of deformity in the bones of the legs
Heart: ventral septal and atrial septal defects
no stomach bubble seen in multiple u/s - could indicate that the esophagus doesn't reach the stomach or there was no stomach
polyhydramnios - indicates he couldn't swallow or that the fluid didn't reach the stomach
Intra-uterine growth restriction was likely - he was already measuring 2-3 weeks behind
All of this and I still have to convince myself that he would never have made it full term, let alone had any kind of decent life.