Paresis

We’ve been skirting around the issue, trying to ignore it… hoping it’ll resolve itself with growth, over time, that it’s something else.. anything, but today we had a visit from ENT and I showed them the attached recording. Joanna had asked us to record the volume of Rose’s crying.

Rose’s current issues with breast feeding, speaking and vomiting strongly support some vocal chord paresis. So it’s likely talking, eating and breathing will be long term challenges. Joanna previously thought Rose’s cords looked good but she didn’t guarantee anything and it seems the recording of her cry was the missing piece of the puzzle.

Whenever the reality of Rose’s situation hits me (like today) I feel overwhelmingly guilty for not actively telling them to

leave her be

at the beginning but also for growing that teratoma, even for willfully bringing Rose into existence. During the first few weeks all that would come out of my mouth when I spoke to her was “I’m so sorry, you poor thing”. I think that’s probably a common thing for a NICU mum (or any mum with a sick child) to feel.

One of the NICU Fellows told me soon after Rose was born that one day she’d be a beautiful young woman with no memory of what it took for her to become so.. I sobbed in disbelief when she said it but I’m coming around to believing it as really it’s the only helpful vision for me to hold on to. It does strike me now of course that she said woman… not baby or child… I’ve only just received that part of the message now, that Rose’s struggle will be a long one.

However we got here my job is to help Rose overcome her challenges. I’m going to try very hard to focus on this as I think me aiming for a normal baby is holding her back.

She is rather lovely. She has these big long eyelashes and she speaks with her expressionful eyebrows to everyone and anyone who comes near her bed, she rarely breaks contact first and she’s an expert follower. She smiles in an open joyful way, often and she rarely cries or gets cross (attached video not at all representative.. She was in the middle of NGT and high flow replacement). She self settles easily and she reaches for things and listens to stories intently, sleeps through the night!! I reckon there’s a market for NGTs for well babies 😉

So – I’ve written myself to a place where instead of pretending it may not happen, I will be requesting a date for her Gastrostomy at rounds this morning and asking for a way forward plan. Wish me courage and Rose luck!

About RoseEir

Premmie born @ 30 weeks with Cervical Teratoma
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13 Responses to Paresis

  1. Rosie Ewing says:

    Jane, with you and Rose every step of the way. Love you
    Rosie

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  2. Ness says:

    Hey huni, Rose is such an amazing, gorgeous and strong soul and is extremely blessed to have you and Andrew as her parents. It does appear to be a long road ahead full of challenges for all of you (you know me – the ‘realist’), but I imagine once each challenge is passed, the joy will be ten-fold. She’s come through so much already (as you all have), she already is a miracle baby. Don’t be hard on yourself, you are the most wonderful, gorgeous person I know and everyone in your life is blessed to have you around…..particularly your beautiful children. Big big hugs,

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  3. Ann Morgan says:

    She certainly is beautiful! Not just her proud gran seeing her this way. I think she also has a beautiful personality too – probably born out of her tribulations. My feeling is she has patience and is a generally sweet, happy little girl which will stand her in good stead for her future. xx

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  4. Louise says:

    Dearest Jane,
    Beautiful Rose is strong and precious and so lucky to have a wonderful family that is beside her every step of the way. Thinking of you all and sending you lots of love. Lx

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  5. Lucy Lum says:

    Jane and Andrew – You have both been so courageous through all of these 150 days and Rose has beaten the odds so many times. My prayer will be for ongoing courage for you both and the best outcome possible to you beautiful baby Rose! xo

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  6. Fi says:

    Courage is something you possess in spades my lady. Am sure you were never quite fully aware of it before Rose came into your life. But you do. Tons of it.
    And given Rose’s incredible history to date, she’s definitely her Mama’s daughter 😉
    Xx

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  7. Ben says:

    What a beautiful young lady – just wanted to give her a big kiss!
    She is going to be a stunner, I may have to put Quincy’s name down now, before the list becomes too long!

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  8. Yes, courage and patience you have both in huge amounts. Rose is just gorgeous, such a perfect rosebud mouth! And am I imagining it, or are they little white tooth bumps? xx

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  9. Abi says:

    Oh Rose, it is lovely to hear your little voice. I remember those early days when the fear was she may never be able to make a sound. Coming far barely covers the amazing things she has already overcome and you as a family have handled amazingly. I think Rose is already fully on that path to be the amazing woman she will be. She’s so beautiful already, I really love the description of her behaviour and lashes, helps me picture her more fully, thank you. I send you lots of love and courage as you alter course a bit, as and when it works for you and Rose, that is all you can do and it is more than enough. There is something about Rose that reminds me of my most special cousin LaShauna, she’s one of three children, she’s one of LOTS of cousins I have and love… But she’s the only one that literally makes you say ‘wow’ every time you speak to her or hear what she’s achieved next. I am sure her mum had moments of feeling as you have, naturally worried about how LaShauna might cope with life looking different, being visually impaired, having endured surgery in her earliest years. Yet I have watched this girl breeze into the most amazing summer jobs, excel at school, go off to Uni, now she’s interning for a senator and laying groundwork for her career as an advocate for people with disabilities, which is just one of several career goals, and she has such warm and beautiful relationships with friends and family. She has taught me being ‘normal’ is fine for the likes of me, but that being born in exceptional circumstances somehow creates the most exceptional, gorgeous people.I can see Rose is going to be just the same. I think it’s wise and sensible to dream big for Rose’s future, she’s getting there every day and I have no doubt she will continue to do so. Love you all loads, off to watch that video again 🙂 A xxx

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  10. Caroline Parsons says:

    I love you sweetheart. You already have courage, so much of it. And Rose is clearly lucky, having gotten you for a mother…

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  11. Sharon says:

    Hang in there Jane. You have all come such a long way and I am sure she will have a bright future. Her gran tells me she has the most beautiful smile which we hope to see first hand one day. I can only say she will certainly have no memory of this journey and soon you will have her home. Love to you all x x x

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  12. San says:

    I’ve reread the past few posts a few times as I attempt to understand fully where you are at just now. In formulating a response I watch the video ‘one more time’ and my mind empties when I hear your voice and that of Rose. She is divine and I totally agree that she has a completely engaging way of communicating. Rose is totally aware of others in a way that I have not noticed in other babes. When she looks at you she has a conversation with her eyes and I can see in the way she looks at you that you are her person. I’ve also been privileged to see how she loves and interacts with her carers as well. It is simply beautiful.

    You have tons of courage my precious friend and if you should run low – I will give you mine.
    xx

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  13. Alex says:

    Hi, my wife and I are having a baby that was recently diagnosed with cervical teretoma during a routine ultrasound… I was wondering if you could maybe email me because we would love to talk to someone who has been there before as there are few resources discussing this condition. Thanks

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