Day 239

You won’t believe it, I have showered, eaten dinner and done a load of washing (actually I just remembered it’s still in the dryer and it’s only 7pm! Ellie has slept the afternoon and evening away. She has had a very sleepy day – although a little unsettled, when she was up we did physio and some dummy dips, which meant she was well and truly tuckered out. This afternoon she did a nice big poo and has slept ever since, hopefully it lasts through the night.

Ellie was much more settled last night, however her high flow prongs popped out what felt like 1000 times. I’m hoping this solid sleep lasts so we can all have a better sleep (except Hannah who has been sleeping beautifully through everything anyway).

Ellie ended up having her xray at around 11pm so went about 5 hours without food, she was pretty grumpy – that is probably another reason she is tired today.

Yesterday the respiratory team visited 3 times, today the registrar visited and the whole gatro team visited. Ellie sees her paediatrician everyday at the moment. All the teams are working really well together and seem to have a similar vision to us, in terms of getting Ellie home.


Blurry morning smile sesh with Mummy and some giggles



4 thoughts on “Day 239

  1. Zowee Batman! 7pm and you’ve done all that? What an incredibly beautiful batch of photos – Ellie’s giggle sequence just delightful – it makes me want to giggle, Hannah’s wide eyed piercing gaze, Happy Mummy with her twinnies and is Ellie having a chew on her sister’s scalp (“there’s got to be some real food somewhere in this joint”) or should we just call it a kiss? Very pleased to hear that E is getting all that attention from a medical team striving to boot her outta there. Now, to just get some decent sleep tonight… xo


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