Day 33

Ellie is struggling with her breathing today, they have had to give her further support on her NAVA and they have increased her steroids. She is currently borderline in terms of needing to be put back on a ventilator. She is off all her antibiotics and is currently infection free. Ellie was a little grumpy this morning and managed to put out her feeding tube, while she was being fed, I did have some words with her after that.

Hannah has put on another 36grams and continues to get bigger. She is on the least amount of support possible on high flow, she is still very dependent on it though. We will be having some hugs later today.

******UPDATE******

Ellie improved in the afternoon, her colour has come back and her breathing is a little more settled. She is still in a fragile state in terms of her lungs. The nurses and doctors are working hard to keep her off the ventilator. Last night one lung collapsed and one lobe in the other lung collapsed that is why she is having so much trouble at he moment, the steroids should help this. Hopefully she can have a restful night. They have increased Ellie’s milk feeds again, they are pushing this quite a bit at the moment. She is very close to being on full milk feeds, if she can tolerate this she can avoid getting another long line put in.

Hannah’s big tummy is starting to be a discomfort, especially after her feeds. They can’t find any reason for it size, it was always large in ultrasounds as well. It is possibly larger at the moment because she is being given so much milk. She also pooed on me again and appeared to be very happy about it, you would like I would know better by now.

 

If there are people out there who would like to support the amazing Royal Womens Hospital and all the incredible work they do for premmie babies, my father-in-law is running a half marathon on the 15th May. The team he is running with is called “Running for Premature Babies”.

If you are able and would like to sponsor Roy, he is hoping to raise $700. Just follow the link below.

https://smh2016halfmarathon.everydayhero.com/au/roy

All donations will be spent on life-saving research and equipment at The Royal Hospital for Women premature baby ward. Ellie’s NAVA machine is an extremely expensive piece of equipment and Royal Womens is one of the only hospitals in Australia currently using them, it is the only think stopping her from being put back on an invasive ventilator.

Here’s another link if anyone wants more detail on how the money raised will be spent: http://www.runningforprematurebabies.com/fundraising/

 

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Ellie all wrapped up (no tube pulling now)

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Ahhh, Mum you are so embarrassing, stop taking photos! (Hannah)

 

 

 

 

 

 

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3 thoughts on “Day 33

  1. Hi there, I got the link to your blog from the Running for Premature babies newsletter which mentioned the girls’ Grandad was running the half marathon for them. I just wanted to drop you a line to say that I also kept a WordPress blog when my little boy was in the Royal. He was born at 28 weeks weighing 685g and we spent 93 days (13 weeks) in the NICU, mostly in level 3. He also had problems with a belly full of air from CPAP breathing support! I guess I just wanted to say that I can remember when he was 5/6 weeks old and going home seemed a long way off but the days do pass and your girls will take steps forward and back but start to move generally in the right direction. Soon enough your blog will begin to talk just about feeding and then one day you’ll be going home. I continued my blog on a weekly basis (as friends and family had become so addicted!) amd slowly all the outpatient medical appointments became less frequent and were replaced with little milestones, cafe visits and play dates. My boy is 18 months corrected now, still small but running all around the place… We can’t mention the word “playground” or he wants to be there! He’s getting lots of words and generally doing great. So keep it up and put one foot in front of the other and you’ll get there I’m sure. All the very best! Colette

    Liked by 1 person

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