Day 130!

And what a 130th day it was!

It was Ellie’s turn to prove me wrong. The doctors wanted to try Ellie on low flow, I kept reminding them she was paralysed and intubated only 6 weeks ago. After a discussion with the fellow and consultant and then the consultant and then again with the fellow. I was willing to let Ellie try. Well of course Ellie was right, in fact she is actually doing a little better on low flow than she was high flow. I don’t really understand the measure of oxygen on low flow, but the highest is 150mls and the lowest is 25mls, Ellie started on 100, was saturating at 100% so was turned down to 80, still saturating at 100% and the doctors have requested despite this that she stays at 80 overnight. Little trooper. So far she is very settled and happy, she even took a bottle very well on low flow.

It was very strange visiting Ellie in level 2 today, she is about 4 metres from her old spot, but it is very different (weird seeing another baby in HER spot as well). She has been reunited with one of her friends that was across from her in level 3 which is nice. She is still in quite a social spot so she still gets lots of visitors (nurses and doctors) which she also enjoys. It is very strange having her so well, we have to wait til the 3rd August for her hernia repair and then who knows what will happen……

Thank you for all your support over the last 130 days (and some of you before that). Also thank you to all the people that have contributed to the 75 blood donations, so far!

You have saved 225 lives!

Both the girls still have a journey ahead of them as their bodies and development catch-up with the age and combat the effects of being born at 26+6, thank you for taking this journey with us.

Hopefully tomorrow brings the removal of all her high flow gear from next to her bed and a blood test with better liver results! (she is getting less yellow slowly).


Morning hugs with Mumma


Hannah playing with the boys


Transitioning and showing me she can breathe with nothing! (for a little while)


I can do low flow, it’s great!



6 thoughts on “Day 130!

    • It’s been a wonderful and inspiring journey so far. We have all prayed so hard for your beautiful little girls, and I will continue to do so. How far has our Little Warrior Princess Ellie come in this last month. I’m so, so proud of her. xxx

      Liked by 1 person

  1. Sounds like the view of the forest is starting to emerge from all those pesky trees – wonderful! xo

    PS if you could have seen today’s photos maybe 3 months ago – H parked kerbside in her bouncer, E saying “I can do low flow”,would you have even believed they were your twins?

    Liked by 1 person

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