Are you hopeless when you are less hopeful when you have more reason for hope? I'm feeling that as time goes on I'm somehow becoming less optimistic.
The TTTS rollercoaster has reached it's first major milestone, the 24 week mark. I'm still not happy, I still want more. 24 weeks is a green bar , viability they call it, that I'd gazed longingly at just a few weeks back. However, the realisation that the green bar has no axis for quality of life has hit hard. At 24 weeks, the low but progressively improving survival rates are accompanied by painfully high odds of severe and permanent disability.
A few weeks back (it feels like a few months ago) I wrote about our rescue team of clinicians that I could see at the 24 week mark on the rollercoaster. The team in the distance with their fingers crossed are now shadowing us closely and are clearly the experts I'd hoped for. However, I can't help but notice the ground where we'd derail for even the next 4 weeks is heavily covered in immediately unforgiving sharp rocks and long term pain inducing nuclear radiation. You are either in for some immediate pain or some long term pain.........or with twins, maybe both.
24 weeks is a better place than we've ever been but I think I felt better 2 days after laser surgery at 18 weeks. It doesn't make sense but I guess that is the nature of ups and downs. The constant good news about the boys health doesn't seem to be dragging me up anymore as the fear of slowly increasing fluid levels and uncertainty about what number of weeks we'll come to a sudden jolting stop a wins the power struggle.
My wife has just gone to bed with some very mild pains. Mild pains that she had last week that were simply ligament stretching. Pains that she didn't have last night when we went in to hospital and her amniotic fluid pockets had marginally increased. Mild pain that will still be enough to ensure I don't get a good night's sleep tonight.
We're going back in to hospital tomorrow.
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