A new blog titled The Preemie Experiment has gotten some posters on the Preemie-L list riled up for acknowledging that 1) preemies tend to have long-term problems and 2) caring for them is hard. Oh boo - mean old bloggers making people sad by acknowledging the truth. Whatever is the world coming to?
OK, it's widely known that I'm a big old bitch, but I've always found the Preemie-L list way too "speshul" for me. Oh God, the angel babies... the emoticons... you need an insulin drip along with the DSL line.
Like the author of the aforementioned blog, I don't want to have more children. Part of me wishes that Susan could have a sibling, but I can't face another pregnancy. It is not highly likely that I would have complications again. There is, however, some increased risk of another case of pre-eclampsia, another genetic mutation, and another prematurity. When I think of how easily it all could have gone so much worse - either losing Susan or her having profound disabilities - I can't imagine facing that possibility again.
With Susan, I had no idea what I was getting into, so I had no opportunity to bail out. I was low risk, so I had no prenatal testing. If I had tested, we would probably have learned about some of the problems in time to terminate. What an awful thought, right? In all honesty, I know that it's what we most likely would have done, for the same reasons I'm avoiding future pregnancies altogether. I never want to have to make that choice.
When the shit hit the fan in my pregnancy, DH and I discussed contingency plans with my O.B. A dear friend of ours had recently lost a child, our godson, after three years of pure hell due to his massive disabilities. We didn't want to go through what they had - it cost them their jobs, home, and marriage - and most importantly we didn't want our baby to suffer. (Our godson was not a preemie. He just had a different form of plain old bad luck.)
It obviously made the O.B. uncomfortable, but we wanted it to be very clear that if she was not going to have any quality of life, we did not want heroic lifesaving measures taken. The docs quietly reassured us that if we did get to such a point, where she was suffering had had no chance of meaningful recovery, there would be no legal battle to stop aggressive treatment. These decisions are made in hospitals all the time. There's just no public notice, nobody sends out a press release. It's just a quiet understanding between doctor and patient. Our doctors emphasized that we were a long way from making that choice, and fortunately we never got there.
Susan was one of the 2% of babies born under 1 pound who did not have any brain bleeds. She didn't have any significant heart, lung, or gut problems. No ROP. She was just small, and she still is. When she was getting close to discharge from the NICU, I spent some time reading over her chart - which had grown to two thick binders full of records. On the doctor's intake notes from the night she was born, there was a brief notation that once she was stabilized, they would wait 48 hours and observe before deciding on an ongoing course of treatment. The neo never said so to me, but I know that he had the same worries as I did, and if push had come to shove he'd have been with us, whatever course we decided to take.