The hits just keep coming..

I was really nervous this morning about receiving the results of the sleep study. Seems I had good cause. Rose is having a significant number of apnoeas during sleep. She had about 13 hours of sleep over the 14 hour sleep study (see the lengths I’ve gone to to actually have a child who sleeps at night!!?).

During one sample hour she stopped breathing 37 times. Periods of not breathing were as much as 16 seconds long.

She’s still oxygenating well but left without support she would deteriorate. It doesn’t feel like it now but it’s probably really good for her that the issue has been identified early otherwise

“her learning could be affected”

[that’s the sleep study team’s language].

So she’ll be on C-PAP when she’s asleep for a couple of years. I need to stop wishing for a well baby. It’s just not going to happen. I know that’s probably really obvious to anyone following this blog but I just keep wishing and hoping that the baby I imagined I was having will materialise, given time. I just don’t feel able to let go of that yet. I do need to though and I don’t mean that I don’t accept Rose. It’s just acceptance of everything that’s happening is such a PROCESS and I’m lagging behind a bit.

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I wonder if many of you read that Good Weekend article about the Australian family living in Israel with 3 kids, 2 of whom were born with a rare genetic disorder. A quote from the article resonated with me and I am trying to live by it as it’s just so true… but possibly my character won’t be strong enough.. I AM trying though.

“My dad gave me good advice,” he says. “He told me, ‘Don’t think, “Why is this happening to me?” You’re not the one suffering. Take the ego out of it. The key to life is not what happens but how you respond to it.”

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Rose was started on home C-PAP on 12 July. Andrew was there to learn how to do it.

In other news: John Smythe (Neonatologist) has organised a meeting to discuss best plan for Rose with Us, ENT, Speech Pathology, General Surgeons, Sleep Team… think that’s it tho I may ask if he can throw in Endocrine for good measure. Meeting should happen on Tuesday. Would you believe one of the main points up for discussion is Fundoplication?!?!

About RoseEir

Premmie born @ 30 weeks with Cervical Teratoma
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4 Responses to The hits just keep coming..

  1. Kylie says:

    Gorgeous Jane, I showed the girls through all of Rose’s photos today, videos, blog, charts, etc. It was soooo amazing for me to revisit it all again and just see how far you’ve come…together! You really do have a little miracle Jane and such a fighter. Don’t see all these test results as stumbling blocks…look at them as stepping stones. Stepping stones that are leading Rose on the best possible route to her long term health and well being. Always thinking of you and sending loads of love Xxxx

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  2. Abi says:

    Darling friend,

    The only one going through this process is you (and A, of course) and so it’s impossible to be lagging. You’re right on track and processing as best you can. You’re right, too, identifying early is a great thing. At least you know what you’re dealing with in that respect. lots of love, A x

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  3. Jane W says:

    Jane, my gosh, what a rough week you’ve had…. How are you feeling after hearing all that? Your strength, positivity and selflessness has been incredible, you really are amazing! That said, I hope you’re giving yourself permission to feel what you want to feel, and to lose the plot when you need to rather than feeling you have to be strong and positive all the time. I loved your post about the NICU crying theory – that should be framed and put on the wall with some boxes of beautiful soft tissues underneath! Hope you are putting that into practice as much as you need to. Sounds like Rose has achieved incredible things and has come such a long way…. a strong and determined little girl with the most fantastic Mum in the world! She is so blessed to have you. Loved that photo of her (in the bath I think) with her adoring eyes looking up at Mummy, so full of love. Sending lots of love to you and your beautiful little girl. Hope the week gets better for you xxx

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  4. Tracy Pasco says:

    Jane & Andrew, we are reading your blog on an almost daily basis in Inver-vegas and from the outside looking in we can see how much progress Rose has made already. There is a lot of life and mischief in those eyes! Sending you loads of love xx

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