A whole other Level

I tried to be brave when we left Rose’s Eirs but I must admit it was a wrench. From my point of view it was such an intense 5 months of building strong connections with people and those relationships are left in NICU. Such a strange feeling .

Rose is now amoung her own kind and it has helped my headspace no end.

In NICU we were primarily surrounded by babies who couldn’t breathe or eat on their own but given time and support would be able to in a few weeks or months. Now we are with the group who need surgical intervention to achieve those goals and it’s helped reality hit home like a ton of bricks.

All of a sudden I can see how fast Rose could go backwards if she doesn’t get this fundoplication I’ve been dreading.. to protect her airway. There’s no way around the Gastrostomy. She coughs when she tries to swallow – so no more breastfeeding for us and I’m terrified her ventilation support (home C-PAP) won’t be enough when we trial it again… but I just won’t say that word yet.

Children’s is much more harrowing. Especially at night. Older children cry and cry and sound like James and Daniel would if they were in pain and I feel so relieved it’s not them crying but at the same time, equally devastated for their parents. Thank goodness Rose isn’t in pain but I worry so much that she may be soon and wish I could find a way to spare her more suffering.

Uncle Ben arrived early this morning at 7am and gave me a break so I could sleep lying down for a bit and have an unrushed shower. Was lovely!
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Nap and shower were followed by breakfast with visitors from Hong Kong! Felt good to introduce Fi & Sharpy to Rose – they’ve been following Rose’s progress closely and are so lovingly invested in her goings on that they (like so many of you who follow this blog) have made me feel so emotionally supported. I’ve really needed to feel that. Thank you!

I’ve spoken to the mum who has a son with Gastrostomy, Fundoplication and Tracheostomy (there.. I said it!).. I’ll call it GFT. She was at the hospital for some appointments from 10am-4:30pm… I bet she can’t wait for the day, years from now, her son won’t have to set foot here again… Anyway she didn’t have the time or energy (I imagine) to answer my sheet of questions but said we’d talk soon.

In the meantime one of the parents in our room kindly let me see his daughter’s gastrostomy. She’s the same age (corrected) as Rose and it looks ok. Clean and neat and doesn’t seem to bother her. You get used to it apparently and just need to see it as necessary and no big deal. I’ll be so proud of myself when I can see it like they do! I know I will. Time and experience have incredible life changing powers.

Oh and she’s had her second 24 hour period of no vomiting (since food).. unfortunately it ended with a large vomit when the doctor was examining her this afternoon but I’m blaming the exam!!

Next step is exploring if an LBO would be useful so she’s just feeding, growing, smiling, SLEEPING and cuddling for now but watch this space:

Good night x

About RoseEir

Premmie born @ 30 weeks with Cervical Teratoma
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6 Responses to A whole other Level

  1. Sharpy says:

    Thank you very much for letting us visit. It was truly amazing see Rose and we loved her beautiful smile and super engaging eyes! She is such a super strong little girl. We eagerly await your future blogs from afar and send you, Andrew, Rose and the boys as many good thoughts, vibes and hope for the future (and promise to get the HK stats up…) Thanks to Uncle Ben for letting us drag you out for some caffeine too!

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  2. Lucy Lum says:

    What a lovely photo with uncle Ben!! Sounds like you are finding out the answers to some of your questions from parents who have travelled a similar path and have a better understanding.
    See you soon! xoxo

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  3. Julie Wyndham says:

    Hi Jane from Julie W I have been closely watching your blog since my Jane pointed me toward it.
    I sat one lunch hour in June and cried and cried as I read the story of your family and Rose’s story and have since also celebrated your victories.
    You are such a strong and wonderful family and of course I have loved the Anne interaction on the comments.
    You are fantastic Jane !
    I think it is better that Doctor’s now involve parents so much more
    today and you seem to have such a good understanding of what is going on even though it hurts so much.
    I am going to see Jane and her family on Sunday so will not be able to read your blog so often however you and Rose Eir will be very much at the forefront of my mind and at every possible occasion will try and get an update however I am not great with technology and it will be a bit hit and miss for me for a month.
    Jane you personally are an absolute wonder! and Andrew too!
    Rose looks is a beautiful baby and I loved the rose onesie!
    Your friends have been so fantastically supportive of you and your family,you have been so blessed although I am sure very deserving of their marvellous support as you are a wonderful, caring person.
    I hope and pray all goes well with the operation my love and thoughts are with you.
    Heaps of love to all Julie W. xxxxx
    Love also to Anne what a hard time this is for her also!
    (for anyone else reading this Jane Morgan lived next door to my Jane’s Grannie in Roseville before the Morgan’s moved to Bundanoon. My Jane and her family are currently in France.)

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  4. Ann Morgan says:

    Thank you Julie! So nice to hear from you. Enjoy France!

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  5. Ben G Morgan says:

    It was such a joy to spend time with her! And you, of course 🙂 Her smiles are amazing, and the way she holds your gaze and attention will be such an asset for her. But I have to say, having her fall asleep in my arms was very special indeed! I can recommend it!

    Uncle Ben

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  6. Simon says:

    Give her a kiss and a hug from me. Wish I could meet my beautiful niece in person.
    I will get down there as soon as I’m able.

    Love to you all.

    Uncle Simon

    Like

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