Day 323

Day started at 5am, peaked with wine and cake and has ended with both girls settled by 730pm. Overall a really nice day.

Ellie’s sitting is constantly improving. Hannah is drooly and didn’t sleep much but overall happier than she has been. Had a great nurse this morning (always makes the days better and easier), another good one this afternoon.

We also had a meeting with a couple of Ellie’s teams today to sort a few things out – long term Ellie will eventually be allowed to have the same formula as Hannah (as long as she tolerates it), bolus feeds will need to be mastered a little better first. Ellie went from 8 litres to 6 litres of high flow today (we are yet to see how she copes, so far so good). There has been some chatter about Ellie having hernia surgery again, so an ultrasound will be booked to confirm their presence or not, either way I think it will be put off til she is bigger and stronger, low flow and time with nothing will be used to test her at times (ensuring she maintains appropriate saturations). Anyway lots happening and all looks to be heading in the right direction for home! The only set back will be if Ellie is dependant on the pressure she is receiving from the high flow rather than the oxygen.

Silly photos, they are showing our day in reverse order.

Having a chill in the sun this afternoon (sun in Ellie eyes so I could get the photo…)


Sitting up is hard work, rest time!

They wouldn’t look up at the same time #twinproblems

This was not a set up. The nurse and I looked over and Hannah had arranged a beautiful Zoo pic for us 😂😂

Ellie I’m with you, rubbing my eyes in the morning. Not sure if anyone else routinely eats their toes….


One thought on “Day 323

  1. What a great bunch of photos today! Love the one with E giving H the sideways look. It’s so nice to hear you talking of heading in the right direction for home – for such a long time that direction must have seemed impossible to imagine. As I’ve said before, onward and upward, precious Miss E! xo


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