Day 309

Well it’s only taken 17hrs but both girls are finally asleep at the same time!!! Needless to say I’m a little tired.

It was a rough night for various reasons so we just had a bit of a chillax day. A rest day with twins means I am just shy of 10,000 steps as opposed to my usual 12,000. I had two beautiful nurses help me through the morning (more about them later).

The respiratory team came And surprisingly they were actually pretty happy with Ellie, they said all her mean scores were actually better than last week. They want to give her two more weeks at 23% and then do a download at 21% or air as some people know it!! They are leaving it for two weeks to give her the best chance possible, if she is successful there is only two litres of high flow to ween after that (that small compared to what she has had in the past).

So, Ellie has always managed to find herself surrounded by the most amazing nurses (it helps that she has a sister that helps her charm them all). I find the nurses I like the most love there job (and obviously my girls), they seem to be the ones that are busy but never hassled and rarely stressed. They are genuine and care about their patients, it is these qualities – combined with their knowledge- that to me make them extraordinary nurses.

Ellie and Hannah would like to introduce you to a few of their amazing nurse friends. Stacey and Georgia are the ones who yesterday so generously bathed the girls while I had my shower. Today they spent time with the three of us – I was very grateful for their help with what could have been a very hard morning on very little sleep. Stacey is also the one who pulled out Ellie’s NJ tube and inserted an NG, the was a massive moment for us and a job many people were avoiding – confidence is an amazing quality to have in a nurse. Georgia is beautiful she wasn’t looking after Elliemtoday but still was there helping and entertaining the girls. She is an amazing nurse and we will miss her when she leaves in 15 shifts 😢

Another friend the girls would like you all to meet is Karli. Karli had to rotate to another ward this week, despite this she still managed to visit Ellie 3’times making her giggle and smile with very little effort. Her love for the girls is so genuine and I will miss chatting to her when she was nursing Ellie. I should probably mention she is a good nurse too.

It is these three amazing nurses plus many others that make me comfortable leaving Ellie when we have gaps in our schedule or even today when Hannah and I were desperate to go outside and Ellie’s sleep was slightly mistimed. They are great for my mental health too, making this insane journey feel a little bit normal and in a way I can’t explain just making me feel like all of this what the girls have been through what our family has been through and what I have been through – just that it will be ok.

Anyway picture time!

*Deb

Ellie: I love Stacey.

Hannah: No I love Stacey.

Ellie: O



Our friends Stacey and Georgia. Thinking Ellie feeding tube should have been on the other side…..


Just found this photo and realised I have never been in the treatment room but Hannah has 😂😂


Karli and the girls. Nurse Hannah at the desk on Christmas Day.


Hmmmmm……. thinking faceswap and identical twins doesn’t really work.

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2 thoughts on “Day 309

  1. Ditto on Jen’s first sentence. Thank you for looking after MY beautiful niece and my amazing great nieces so well. Aunty/Great Aunty Julia x
    PS Sorry to steal your thunder Jen, but you had already said just what I was thinking!

    Liked by 1 person

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