We drove up to the Central Coast yesterday to have lunch with my dad and his partner. They asked about the baby and we tried to explain everything that has been happening. They were both horrified by the treatment we’ve received, particularly with the changing of the MRI report. My dad’s girlfriend was great about it all and said that in light of all the grey areas, as far as she is concerned, everything is normal until the baby is born and something definite is determined. Her own sister is very sick with a fairly rare and mostly untreatable illness, and she manages most of her sister’s healthcare so she was able to understand what we’ve been dealing with from all of our different specialists. I asked if she and dad wanted to see Nudge once he is born and they were very emphatic that they want to be kept in the loop and would love the opportunity to hold him, whether he makes it or not. That meant a lot to me; my dad came to the hospital after Max was born and he held him for a couple of hours with us. I’m glad that he will get to meet another grandson too. So that’s all of my family asked and everyone wants the chance to meet him. The husband hasn’t asked his family, I’m not sure that they will want to see Nudge at all but maybe they will surprise me?

I’m home from work at the moment and these idle hands are restless. It’s too hot to knit and I have no one to knit for anyway. I can’t do any nesting but did manage to finish painting the safari design onto the wooden T-O-Y-B-O-X letters for the baby’s toybox (it was the toybox my brother, sister and I had as kids). I just need something to do besides thinking and distressing about our situation. I’ve been collecting medical journal articles that I can use to convince our doctors to do something more. I really feel that our doctors have given up on us, that it’s just all too hard for them. They could have been doing amnio-infusions right from the start which would’ve helped our baby’s lungs to develop. That’s the first and biggest hurdle – if there’s no lung development they won’t be able to ventilate him. And I’ve found so much literature on peri-dialysis in neonates, and plenty of successful case studies of renal transplants in children under 4yrs. And there are hundreds of thousands of people living with artificial bladders (either internal or external). There’s even been successful transplant of artificially-grown bladders in the US over the last 3 years.

OK, granted it’s a horrible start for any child but I’m just finding it very difficult to just sit and do nothing. It’s made worse by the recent news here of the successful separation of conjoined twins. Not to belittle the good work done for those girls by all involved, but I really feel that it’s a sad state of affairs that they can get better access to health care than me. I can’t even get my geneticist to give us the results of the tests done two months ago!

Our plan for the coming weeks is to get back to the GP and ask her to repeat the glucose test (although this might be pointless if the baby has stopped growing, based on fundus measurements taken at 26 and 30wks) and to book in to see the geneticist so that she might be good enough to give us the effing subtelomeric test results from 2 November. Hmph!

This entry was posted on Saturday 2nd January 2010 at 9:55 AM and is filed under Family, Nudge, Pregnancy. Both comments and pings are currently closed.