Day 161

Wow what a day. I will start with Ellie had been quite unsettled during the days not sleeping much and generally wanted attention to be happy. She hasn’t been as bad during the nights, except last night she only had quick naps from midnight and was needing hugs to settle.

Well flash forward to this afternoon and she was in such a deep settled sleep they had to give her a whiff of oxygen (23%, air is 21.7%). With this amount of oxygen she is saturating between 95-98%, excellent. So wanna know why Ellie was so happy and settled this afternoon……. she is back on high flow! Woohoo, after what feels like weeks of backwards steps and nothing but waiting she took a giant leap forward today. Her stroppyness was obviously her way of telling us she is done with NAVA, it served her well but it was time to move on, Go Ellie.

Things that come about from the meeting in a nutshell are:

  • she will be going to the children’s hospital at some stage – there is no stopping it. Most likely she will go into surgery (for her hernia’s and possibly her reflux things) from the Royal and be taken to the Children’s straight from surgery.
  • they are still unsure about what surgery she will get outside the hernia repair, possibly just the hernia repair or they will just to a PEG line or they will do hernia’s, PEG line and tighten the sphincter at the top of her stomach. Some more investigation needs to take place before this will be decided.
  • This week Ellie will be on a high flow trial, next week they will try to do the investigations the gastro team wanted and then after that they will look at feeds once again.

I feel like progress is being made today, that there is a plan and that there is once more a light at the end of the tunnel. It is still just a small light, but even a pin prick is better than the complete darkness we have feel like we have been in for a few weeks now.

Ellie just needs to stay on her high flow!



Stop playing with your phone and hold us properly Mum!


Hmmm, pretty sure this is my bed. Hannah stop squishing me.


Yay! My head and face are free.


6 thoughts on “Day 161

  1. So happy for all of you deb! What an awesome little girl you have (+ another awesome girl and 2 awesome boys lol). What a huge milestone, she’s looking great 😍😍😍😍😍 can’t wait to see you all again xxxx


  2. beautiful pics:) stay strong you are all doing amazingly and are truly inspirational, our thoughts are with you all every day, Go Ellie, love to all of you xxxxxxx


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