Though Savannah is trying hard she definitely could be doing better… 

She is still roughly hitting the 52% target but is still going up and down and oscillates between high 40s and low 60s. She is theoretically where she they expect her to be, but it would be nice to see her a little more stable, having fewer desats and starting to go down on her oxygen requirements.

The consultants still don’t seem too worried and the main thing seems to be to get her to grow. The impressive 100g weight increase on Saturday though was a little too good and was “bad weight” apparently so her feeds dropped slightly. Today she gained 49g which is a little more like it and hopefully all good weight (I.e. Muscle rather than just fat) and has since gone back up to full feeds again.

The doctors are trying a few things though to try and help reduce the oxygen requirement. They have started her on a course of dirrerexts to help get rid of some water retention as well as help shift some liquid on her lungs which will hopefully help.

They are also going to test for metabolic bone disease but we aren’t 100% sure if that is just routine or if there has been something to indicate they / we should be worried… We’ll let you know when we do!

Lastly SJ was also due another head scan this evening (routine) but was unable to get one due to the fact we were having cuddles and then afterwards because the doctor couldn’t turn on the machine!!

So I feel slightly in limbo… SJ isn’t doing badly, could be doing better but I remain worried she’ll go backwards. Every time I do I try and remember to look at her and see the positives… And her cuteness.