Day 144

So smart aleck Ellie only put on 5grams on Friday. I couldn’t even be upset by her poor weight gain because it was very satisfying being able to say she is exactly 4 times her original weight, exactly 2780grams. Only took 4 1/2 months…..

Ellie is actually looking really good, her skin colour is the best it has ever been, she isn’t working as hard at her breathing constanly. All this rest is really doing wonders for her. They want her to keep resting and just work on getting bigger, especially while she has her special feeding tube and is on continuous feeds. Funny story about her continuous feeds, as Matt mentioned yesterday she stirred quite a fuss about missing out on her full belly. Well by about 6pm yesterday the nurse and two doctors decided they had better give her a bit of a feed every three hours still – this kid is going to learn tantrums get you anything…. Anyway she now gets 20mls every 3 hours down one feeding tube and her other 30 something mls trickled down her other feeding tube over 3 hours. Yes she now has two different feeding tubes to try and rip out! There is so much tape on her chin at the moment and socks over her hands!

Another Ellie challenge at the moment is the head gear associated with CPAP. There are masks that go around your nose and make a seal or prongs that go up your nose to make a seal. Well Ellie hates prongs, always has. The nurses alternate between two different size masks on her. However her poor little nose gets red and sore and dented – so lucky Mummy and Daddy now get to hold her while she has prongs in – she needs constant care during this. She gets hugs and chats and stories and songs. She responses by crying so hard she desaturates quite dramatically, then stops, recovers and starts again – at least she knows her limits (she often requires oxygen while wearing her prongs also). She does occasionally dose but it is far from a restful time for any of us. Ellie and I managed 3 hours today which is the longest she has had prongs in for a long time. She made her point very clear when she promptly went to sleep and began saturating in the high 90s as soon as her mask was put back on.

Another Daddy day tomorrow.


This was posted by Helen on FB last week –

Ellie Grace has just hit 139 days in hospital, our little Warrior Princess is such an amazing fighter. Her parents Matty & Deb , brothers Nate & Levi and sister Hannah have been there every step of the way. It goes without saying that they are exhausted – physically & emotionally.
We are now at 80 blood donations, 20 off our target. Right now Ellie’s family need a boost so let’s roll up our sleeves and donate!
It’s time to rally, if you can’t donate for any reason, inspire a friend or family member to donate – go with them if you can!

– There are mobile vans and centres all over Australia, to find your closest follow this link

– Make sure you join our RED25 group ‘Hannah Rose & Ellie Grace’ by following this link

– Take a photo of yourself donating and tag Deb & Matt with the hash tag‪#‎thisonesforellie‬

– Change your profile picture to the photo above for the month of August

Please message me if you have any questions


3 thoughts on “Day 144

  1. Oh wow Deb. You have a very strong willed young lady on your hands. So lovely to hear the rest is doing her good and I hope you’ll get some more relaxed cuddles with Ellie soon. Love to you all, Jen. xx


  2. Think you’re going to have to use the “no confectionery” supermarket checkouts – E is going to be soooooo good at the checkout tanty!
    Glad you can see the improvement with this resting spell xo

    Liked by 1 person

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