Day 330

After a few minor tantrums yesterday evening we worked out Ellie was trying to tell us nearly 8/11 month olds are waaaay to old to be wrapped and lie on too small her her memory foam. So had an amazing night sleep (as did Mum and Hannah!!!) in her big girl sleeping bag, foot probes out the arm holes and all. (If anyone knows of a brand with two way zippers or seatbelt holes at the bottom we are all ears).

We wanted around all afternoon for a heart echo that never happened (something we have to check off our list before going home).

Also my hard work paid off respiratory team were very happy with Ellie, they correlated any desats she had with what was written, her flow has been reduced again! Unfortunately they think the extra work in breathing (ie burning calories) has stopped her weight gain. Over the week her feeds have been increased by 60mls throughout the day, plus all the extra milk she has, she is back up somewhere around 130mls/kg/day. Not to mention the solids she is consuming. I’m told this will get better as she gets bigger, let’s hope so or there will never be any food in the house! She is only the size of some 3/4 month olds so this is pretty amazing for her.

Otherwise it was a pretty quiet day. O’ also her diuretics have been halved and this time next week they will be stopped. We are working on our getting home checklist, just so when the time comes we are ready. She is going to try out Hannah’s formula next week which will make life easier for us when she comes home.
Our blood donation tally is at 178, that’s only 22 more donations needed by the 16th March.

I’ve heard people have already started thinking about their individual time capsule letters for the girls….. I guess I should probably start thinking about it as well.


Sorry not many photos today. Had a video but it isn’t loading sorry.


Trying to entertain Ellie and keep her still during a feed.


4 thoughts on “Day 330

  1. Hi guys,

    I second Grobag, they definitely now all have
    2 way zips but only some of them have seatbelt holes. Let me know if you need more, I think I have 2 that have both (zip and holes), not sure what sizes tho

    Liked by 1 person

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