Sorry, just typed a big reply and lost it.
We're ok. Still in Neonatal and will be for a while. More because they don't know what is wrong with Edith as opposed to her being poorly.
She is actually doing ok - our of incubator and only has a feeding tube and one wire now.
There is talk of moving us to GOSH. There is a specialist there who deals with her kind of issues (she has poor upper limb tone and isn't feeding). She is also really quiet and rarely cries and doesn't display "normal" newborn behaviour. But all initial tests have told us nothing. She is a mystery!!!
Sadly we are having to accept that there is some kind of underlying issue. She is having her DNA tested to look at some more obscure possibilities.... but she isn't going to just 'get better'. At least not until we figure out what is causing her issues and knowing how to help her and move forward.
Here are a few pics
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