Heading back to Mayo Clinic today and would appreciate your prayers. I don't know if this is going to be a routine visit, plan making, or actual action taking.
We are meeting with our neonatologist and our perinatologist. On the agenda is discussing promoting lung development so that Siena's lungs will be mature enough (after 15-20 weeks without amniotic fluid at the anticipated time of birth) for her kidney form and function to be evaluated/diagnosed at that time. Since all testing has proved mostly inconclusive getting her lungs healthy is her best shot medically. (Not that we have stopped hoping, praying, and knowing that her best hope isn't medical in the first place.)
From here on out, we are in highly uncharted territory. In addition to it (whatever it is) being a rare abnormality, it is a rare situation that we would like to try to save her if we can. Only a few babies have successfully survived past the first week without kidneys (there are two that I know of, however, both baby girls currently on dialysis awaiting transplant as of the most recent report I could find). This means there are no protocols or research or anything else to really guide our doctors.
Last time I talked to them, however, they seem willing to try and see what we can do. Our perinatologist actually took the initiative to say we should work with a designated neonatologist NOT from the palliative care team to coordinate her care which I see as a huge sign they really are going to fight for her now. She even asked if there was one we had met with we felt most comfortable with. The NICU doctors have previous noted that Siena needs to prove herself as a fighter (I think she's done a good job, yes?). I'm starting to think we needed to make our own *fight* clear as well.
Being good academically minded people, we aren't afraid to drop *publication potential* carrots in front of them. Tim speaks fluent research!
In the meantime, we will wait for God to finish what He has started!