Day 159

Today was the end of a long string of Daddy days and we celebrated with a bath! (I think it was Ellie’s 3rd bath ever, but my first with her). Ellie had long periods of time without breathing support (30 seconds or so) and handled it really well which was nice to see.

She seemed quite well again today, her NAVA levels are staying low and she is comfortable on it. It was mentioned today that normally they would push for CPAP by now but they think NAVA on a low level suits her better as an older bub and she may transition straight from this to high flow one day.

There has also been an increase in talk about moving to the Children’s hospital and it does seem like this will be a very likely part of Ellie’s future. Speaking to many more people about the Children’s hospital I am starting to feel more at ease about it. They do have area’s for a 1 to 1 ratio and I have been told Ellie would currently fall under this requirement. They also have extra things to offer such as developmental teams and other specialists who offer things for older babies like Ellie that the current NICU does not.

The main thing keeping Ellie where she is is her NAVA machine, which is available just about nowhere but where we are (I think Canberra is the next closest NAVA machine).

Another week of rest and recuperation is on the cards for Ellie and her main goal is to put on more weight. She is currently sitting at 3030 grams.

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‘Dad, are you telling me some people do this every day?’

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‘That sounds kinda nice, I could put up with a warm bath every day.’

 

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4 thoughts on “Day 159

  1. Beautiful little girl, awesome work young Matt, Deb our thoughts are with you every day (ps: if ellie has an appetite like Matt did when he was young she will do fine) , you guys all stay strong and keep well 🙂

    Like

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