May 22 Public update about our twins that I posted to Facebook

 On May 22nd I posted:

"We received good news and bad news at our appointment today. Baby B is healthy and shows no complications. Baby A appears to have Limb body wall complex, which our doctor indicated is terminal. Upon some further research, there seem to be some extremely rare cases where a baby survives it, but they are essentially anecdotal in frequency. There is a strong potential that we will have to make some very hard decisions later on as one identical twin doing poorly or dying in utero can have a heavy effect on the other. There is a rather awful-to-consider but sometimes necessary procedure where they cauterize one umbilical cord to starve and kill the one doing poorly to save the other lest both die. There are also questions about whether hospice for a baby who will be suffering for up to 36 hours before dying is the most merciful choice. There is also an astronomically tiny grain of hope for two live girls who make it. Either way, we will be the best parents we can be for each of them for however long we are their parents. Nonetheless I would request prayers for both of them and for us. While I appreciate people sharing support on here, I don't wish to share further details about this situation in facebook comments, so if you want to engage in a discussion with me about it please wait a few days for me to process through some of this and then private message me or call me. Thank you sincerely for your thoughts and prayers."

This visit had been tough, because we were told (somewhat incorrectly) that we did not have ectopia cordis or an omphalocele (which are 10% lethal) but that we did have limb body wall complex, which was terminal.  I may post about this day later as it is fairly strong in my memory, but we will see.