Home at last – Amber, The Trisomy 18 journey of 'my little fox'

4th December 2021

I realise I haven’t updated since Amber has been home and I’ve also been crap at replying to messages! (They are piling up in my inbox and I PROMISE I will reply to you all as soon as I have a minute!) I love you all and thank you for all the love being sent to Amber and I Just to reassure you all, despite having at least two, incredibly scary nights where I thought I was going to lose her, Amber is doing well. She has a cold currently which is a worry alongside her Edwards syndrome so her care is taking even more of my attention than usual ans I’m averaging3 hours sleep a night ( I didn’t know that was possible!)She did have a very important and special visitor yesterday so here’s the photos from then and I’ll do a proper update when I have some energy (and sleep!)

25th November 2021

And we’re home and finally have a brief little bit of quiet in amongst the chaos Crazy busy day on three hours of sleep, rushing around from six this morning, over 3 hours driving, trying to unpack over two months of stuff, medical equipment and medications in an hour ready for ambulance arriving, utter panic and terror at how Amber would be on her transfer, even more fear at her switch from cpap straight to low flow and relief at how well she appears to be doing so far () A ridiculously busy house of her neonatologist, neonate paramedic, paediatrician, four hospice ladies and a pizza delivery from Coreigh and Dan () plus shopping sent from Jemimah ( Jem I am having a wee gin in my bath while Janice and Julie from the hospice watch Amber for a little while downstairs… thank you sweetie xx) I am exhausted and relieved, scared and joyful all rolled into one. To everyone, thank you for all your lovely messages and the love you’ve sent Amber and myself and the understanding I’ve not been able to reply to anyone today. (except one stroppy individual who I won’t name.)I’m going to take the next day or two to settle in and try get into a routine. I’m getting used to the fact we’re not in hospital anymore, as is Amber. It’s a HUGE transition. We’ve been in now almost two and a half months and I’ve only been home for one night in that entire time! The quiet is weird!!Love to you all from myself and my little fox xxx