Thursday, March 14, 2013

an update on our bambino

Another update on our little bambino...
Hi Friends,
Thank you so much for all the lovely emails, text messages, voicemails, cards etc we have received over the last few weeks. Apologies for the people I haven't got back to via email...I started emailing people back a couple of weeks ago...and it just got too much, but please know we received them and we really appreciate your prayers and love.

We have had a few more appointments since last we emailed. We had the heart Echo and the structure of the heart is pretty "normal" it's more to the middle of the chest which could be caused by a couple of things (smaller lung on the left or diaphragmatic hernia on the right, but they can't be sure) but generally they were happy with the heart. We received some partial results a few days after the successful amnio (on Feb 26th) saying that they had not found indicators for Trisomy 13 or 18. (there were only 2 chromosomes at 13.18 and 21) Which was emotionally confusing, as we didn't know what it meant for life expectancy. That began the waiting game of not really knowing what the heck was going on. We went to Adelaide for a check up with the specialists yesterday (12th March). Hoping the full results of the amnio might shed some light on what was going on. We also met with a Genetics Doctor (Dr Barnett) and Genetics counsellor. Unfortunately the full amnio results didn't show anything else, other then it is not a chromosonal issue.  Dr Barnett told us about another test called an ARAY test (more comprehensive) they can do with the amnio fluid they took, that test is done in Melbourne and hopefully we'll hear something from that in a couple of weeks. But Dr Barnett said it is more than likely we will not know what is going on (have a diagnosis) until bambino is born. He has a list of things is could be due to the abnormalities but he said he'll give that to us after the results come back from the ARAY. It's a probability we'll be meeting with them a bit in the future to talk about implications for future bambinos...but we're putting that to the deal with later pile.

So the crux of it is we don't really know what is going on or what will happen in the future for our bambino. And that it is a wait and see thing...which is tough. So we are taking it day by day. In the ultrasound we had done yesterday bambinos head is measuring a couple of weeks bigger than it should, this is due to the fluid on and in the brain, and they want to keep a close eye on it. On April 2nd we'll go back down to Adelaide and we're booked in for a another ultrasound and an MRI. We're also going to meet with a neonatal doctor to talk about care for bambino post birth and they were talking more along the lines of palative care. 

We're pretty low at the moment but we're enjoying being in our new home and own space, and of course even on the hard days Tim can still make me laugh :) We thank you for your support and would really appreciate your continued prayer support in these coming weeks
Love Loz and Tim

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