Day 145 – Late Update

If you are a regular reader you would by now know that Monday is Daddy day at the hospital. We had made a plan for our visits to be the time when Ellie had prongs in her nose so we could be there to help her cope. This gives her little face a break from the mask but she really hates them and it normally requires a lot of TLC to help her cope with it.

I was very pleasantly surprised when I arrived and was told Ellie had just come off her prongs, and had been on them for almost 7 hours straight! She had coped with it really well and this meant I could just enjoy time with Ellie who was sitting up in her chair wide awake when I arrived. She was very calm and interactive and it was a really nice time to spend with her. She had some songs sung, some books read and even practiced some Spanish with me. It was great to be able to spend quality time with a cheeky Ellie rather than a sick Ellie.

Ellie has put on another 120 grams in the last few days, which is a really big weight gain. Every gram she puts on means her tiny body is growing and so are the lungs that desperately need to be bigger to function properly.

Both consultants today agreed that Ellie is best off in the Royal Womens ICU considering our family situation, which feels like a great relief to both of us. Anything can change, but these two are in charge over the next two weeks which will give her a really good chance to rest up and get stronger with the ppl that know her best.

She has no pressing issues (other than the hernias). Her liver results all came back clear and she is definitely looking a better colour than ever. Another week of resting and growing is on the cards.

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Ellie chillin out on the floor for a change of scenery

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Laying back hanging out with Dad.

 

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5 thoughts on “Day 145 – Late Update

  1. Great to hear on all fronts! Nice you hear you had an enjoyable daddy day Matt. I Hope Hannah is loving having her big brothers to herself, but hopefully it’s not too far in the future she will have to share- keep up the great work miss Ellie!

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  2. I love good news days! By my reckoning, Ellie must be perilously close to the 3kg mark – wonderful. Been wondering about the liver scan results – more good news. Glad you had a lovely day with her, Matt – singing, reading – Spanish lessons? – why not! Onward and upward, Senorita Elisabet xo

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