Building their case..

Rose is having a 24 Hour Esophageal pH Test (or Impedance test) at the moment, involves a nasal tube inserted to the end of her esophagus and her nurse or I record when she does things like vomit, gag, stop breathing (hasn’t happened since her last “event”), sleep, wake, eat, finish eating. This will show how acute her reflux is and if it’s life threatening.. I don’t think it is but we’ll see. If it is then the case for a fundo will be more compelling. The results will be collected on Monday and a doctor should compile a report by mid to late next week.

I’m a bit worried [I could start every post like that!] that 2x 6mm tubes down her throat won’t leave her much room to vomit, breathe etc. given her first LBO (when her throat was very swollen from intubation, op etc) showed her narrowest point was 4mm… but I guess time will tell. [hmmm.. I just said this to Rose’s ENT surgeon and she pointed out that the LBO was on Rose’s trachea and the impedance study is on her oesophagus so little to worry about there… makes me realise how inaccurate a lot of my assumptions and therefore this blog is but hey.. emotional mum rather than reporter here].

I have little emotional energy or presence of mind left for many more procedures of this kind. I am so sick of her being hurt for her own good and this one was my fault.. tho’ the lesser evil hopefully… if they find a fundoplication is not required I guess I can feel less guilty about it!

Watercolour of the Nissen-method

She’s off her high-flow therapy while they complete the pH test.

Breastfeeding is still very slow… my guesstimate is that she gets between 10-20mls in a breastfeed so we top her up with about 50mls each feed… hard to imagine we’ll ever get there but I think it’s safe to say we are both pretty determined to. Main issue is she doesn’t have the strength / stamina. Her energy is used breathing and trying not to vomit I imagine. If only she could get strong enough overnight… I’m being impatient I know!

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About RoseEir

Premmie born @ 30 weeks with Cervical Teratoma
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7 Responses to Building their case..

  1. Louise says:

    One thing you haven’t been is impatient, you’ve had the patience of a saint and the stamina of an ox to deal with the endless emotional energy required of you daily. It must feel like life is moving in slow motion. Isla is quite besotted with Rose and loves to look at all the pictures on your blog. I suspect she’ll recognise your Mum if she sees her on Darling St šŸ˜‰

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  2. San says:

    Heya love, this sounds extra ordinarily stressful, on top of already being stressful. Don’t be pushed around. It may not feel like it in there but you have loads of people who support your choice and your decisions based on what you feel is best for your daughter. Xx

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  3. Kate says:

    Yep I concur. You have all my support on this one Jane. Just like mum always had an instinct about us you have the best one with Rose. All my love, thoughts and wishes. Xx

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  4. Ann Morgan says:

    Lovely photo Auntie Liz!

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  5. Jill says:

    Jane it must be hard in the middle of all of this to see the clear way but I am constantly inspired that you are amazingly able to hang on to what feels right for Rose and advocate for it. that is so hard in a sea of ‘experts’. The result of the latest test just might be building your case. Love Jill xxxx

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  6. Narelle Day says:

    Hello Jane, I am following your journey with Rose and hasn’t she come a long way in her quest for life. Like mother, like daughter, you are both to be congratulate and commended on your fight against all odds. Follow your inner feelings and don’t feel insecure, be brave in the knowledge that a mother is the best one to know, due to every little nuance of her baby, which tells her what is happening with her and what should be done from the choices given at any one time.

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