Day 173

Another Monday daddy visit. Ellie still seemed quite okay and had a short chat before a big sleep on my lap. She seems to really like hugs and it usually sends her straight to sleep. She put on 120 grams and is now 3.45kgs! She is also due a reflux test tomorrow (an impedance study) which basically stuffs a tube in her stomach for 18 hrs and tests the acid levels. She is going to be put back to high flow for this test, and hopefully she handles it without the NAVA without tiring her out too much.

Things are also starting to get very real about our move to the childrens hospital. Her discharge summary was prepared over the weekend and today a consultant came down to get a crash course in Ellie’s history of breathing support. We still do not have any definite dates but we could get only 1 or 2 days notice when it happens.

Ellie had a bit of a photoshoot today as she discovered herself in the mirror.


Hannah….is that you?


‘Thanks for coming to visit me sis…’


‘I thought you got rid of your mask?’






2 thoughts on “Day 173

  1. Who’s the fairest of them all? Why, Elizabeth Grace, of course!
    Great numbers on the scales, Ellie – keep it up!
    G’luck with the reflex test tomorrow – hope it rules out the need for any surgery (other than the hernias) -will keep all fingers and toes crossed x


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