Day 293

Ellie is doing very well on her 3 hourly feeds, now that she is getting it over an hour. We are going to slow her feed progress down a little so that it doesn’t impact on her breathing or set her back at all. We will trial a 45min feed tomorrow and assess from there. Our aim is to get her feed time down to 30mins before thinking about progressing to 4 hourly feeds.

Otherwise Ellie is doing great, longer day sleeps and she might even be perfect….. 40 minutes is not a sleep Ellie!

Her oxygen is down to 25% tonight as a trial, hopefully she does well. We had a break off high flow of slightly over 15 minutes today, part of that was getting her back onto her high flow, but she did extremely well. During her break today she had her first ride in a pram! We went down the hall and did a few laps of the fairy garden, then got out and touched some plants and pulled some leaves and then came back. Wow the time goes quickly.

Ellie also had a physio session and an OT session – she had a pretty tiring day all up.


The outside world is still quite bright for Ellie

This is Ellie getting a feed, very hard work

This is how Hannah sleeps now. If one person mentions crawling you’re in trouble!

I couldn’t strap her in because I couldn’t get to the straps, picked her up and the chair came with her…. it is Ellie’s

Mummy only packed clothes in Ellie’s size, so I got a new dress

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