Post procedures

Rose wasn’t taken into theatre until after 1 in the end. It was heartbreaking watching her so peaceful in her little transport crib and pretty confronting being visited by each of the specialists who would be involved in her care. I was given a lot of indigestible information about what she would have done to her over next couple of hours and asked repeatedly if I had any questions. Thank goodness Rose’s NICU mum is on today. Katie is so our favourite nurse in case you couldn’t already tell. She asked the questions I didn’t and answered the ones I forgot to ask the specialists after they’d gone.

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Katie on left and Jen on right. Jen easily second fav so good nurse day.

Don (Lou’s husband and almost as wonderfully Acting Head of Paediatric Anaesthetics) also dropped around – he’s very good at making everything seem possible, reasonable, sensible. It is really – he’s good at making me understand that. We are so lucky to have him around!

She came out of theatre just after 3pm. The ENT surgeon (Dr. Joanna Walton) said Rose’s trachea has some very narrow, swollen or ulcerated places and she may need surgery in the future. She didn’t see her vocal chords move so she may have some issues there but too soon to tell. They reintubated her. I asked Joanna if she thought I’d ever be able to breastfeed and she answered pretty quickly and decisively that she didn’t think so. I’ll have to set aside a couple of hours to grieve that one! She did say they’d try extubation again in 3 weeks or so (Neonatologist said 3 wks is conservative and could probably be done sooner) – maybe with steroids on board to give Rose a better chance to breathe but that she thought it very likely she’ll need a “temporary” tracheostomy down the track… where temporary is about a year..

She looks pretty good with her dressings removed.

So… she’s okay. Take home lesson for today: Do not emotionally invest in best possible outcome… it’s pretty unlikely to happen in here and when one thing is resolved another issue pretty likely to pop up to replace it. I guess I’m going to have to learn from scratch not how to be a parent but how to be a parent of a special needs child. Woe is me etc etc.

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About RoseEir

Premmie born @ 30 weeks with Cervical Teratoma
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6 Responses to Post procedures

  1. Chantelle says:

    Rose looks amazing Jane! Love reading all your posts and pray she makes each goal and onto the next. Lots of love Chantelle. Xx

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  2. Ann Morgan says:

    What a shame! Still she has beaten the odds up till now. She does look great without her dressings.

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  3. Sharon says:

    Jane, Rose is so lovely. It has been great to read your blog and you and Andrew are doing such a great job looking after her. You are in our thoughts constantly. I can imagine how much you are looking forward to holding her. Roger and I send our love

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  4. Vanessa Kingston says:

    Oh huni, how disappointing and heartbreaking. She is such a strong little soul and beaten all the odds so far, she will get there. You are so amazing coping with this the way you are, I am in awe, big hugs

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  5. Kylie says:

    Super tough day Jane. Thinking of you guys and sending lots of love xxxx

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  6. Fi says:

    Baby Steps.. for everyone right?! Xx

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