Happy Birthday, Rose!

Today is Rose’s first birthday.  It’s strange to contemplate celebrating a birthday before she’s a year old.  At the moment 18 May, her due date, feels a lot more like a milestone for her but as the years go by this day will become the same sort of day it is for full term babies so best to start as we mean to continue.  I had planned to have a big celebration and invite everyone who helped get us to this point but after negotiating James and Daniel out of birthday parties this year as I just wasn’t able to even begin to coordinate “events” I realised it probably wasn’t going to be achievable.  I’m still hopeful our home life is going to become more manageable with the help of a generous and talented lady, Ali who’s helping me achieve some of the things I need to to get our family life back.

Today we’ll be celebrating with informal cupcakes in the park with my girls and their families and ours (organised by said Girls ;-).  I’ll add some photos to this post tonight.

I guess you want to hear how Rose is doing?  She’s well!  Her Home C-PAP pressure has been put up after a sleep study on Wednesday night, from 4 to 6 so this probably means as she grows in size her Tracheomalacia is causing her airway to become more difficult to maintain while she’s asleep.  But the C-PAP is still helping so I’m trying not to look further ahead than that for now.

She’s started showing more interest in solids and I’m gaining confidence offering them.  When we first started I was so worried she would aspirate or stop breathing but she’s not done either of those things and seems to like food… tho’ I suspect she doesn’t understand that it requires more than a taste.  I’m currently trying to find a good paediatric dietician who can help us introduce a blended diet that will involve sending real food, blended, down her PEG tube (excellent excuse to buy a Thermomix?).  I’ve held off to see if we could establish oral feeds but I think it’s time to try to fatten her up for winter as I imagine she’ll be contracting all sorts of respiratory infections that will mean she won’t be able to be fed as much.  Until now she’s been having mostly expressed milk but as she’s 9 months and 18 days corrected (today) she really needs more to grow healthily.

She’s vocalising more and we are hopeful that she’ll be able to speak.  Her weight is still low (5th percentile) but her head circumference and length are starting to normalise (~40th percentile).  She can almost sit unassisted, she can roll but not crawl but it’s all coming and she’s really wanting to move around which is encouraging. Her Hypothyroidism isn’t going away, as she grows, her medication also needs to be increased.

She’s happy, alert, communicative and loving… she adores her brothers and father… I always suspected if I had a girl I’d be usurped and I was so right.  She’s the centre of our household!  Daniel, particularly, is besotted.

It is an out-of-body sort of feeling when I think back to what I was doing this time last year… I was trying to convince the medical staff at RPA and myself that everything would be fine if they could just stop my labour, I could go home and get on with my day!! ImageImage

Today is a day to celebrate Rose’s successful determination to live and to live well.  I am so proud of all she is achieving every day and I think finally I can say (though not without some reservation) that I am pleased this was the only path presented to us and that we have trodden it this last year and that it has brought us to this now, this now with Rose.

Thank you for your love, support and involvement this year.  It feels good to be writing to you, Our People, who understand just what this day means to our family and how many of Rose’s triumphs we are celebrating.

Love to you and yours.

Jane

Sleep Study

Sleep Study

Happy Birthday Video

About RoseEir

Premmie born @ 30 weeks with Cervical Teratoma
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13 Responses to Happy Birthday, Rose!

  1. Ness says:

    Hey jane, reading this post has made my year! What a wonderful post! You and your family are so amazing and inspiring. Thank you for sharing this with us. Love love love you guys xxxxx

    Like

  2. Simon Mordant says:

    Jane-Catriona and I send love and hugs

    ________________________________________

    Like

  3. Carol Young says:

    Jane, your post is truly inspiring. What a lucky little girl Rose is to have been born into such a caring family. She is obviously a happy little girl and can only continue to improve under such loving care. I admire you so much. With love – Carol Young

    Like

  4. Sharon says:

    Happy birthday to a gorgeous girl. What an amazing year for you all but what a delightful addition to your family. She is so full of life and a beautiful smile. Heaps of love and kisses from Roger and I x x x

    Like

  5. Helen says:

    Jane, you are amazing! And Rose, you’re absolutely beautiful, and so lucky to have such a wonderful family. Thinking of you all, much love, Helen xxx

    Like

  6. Fi says:

    Today is joyous celebration of what it means to be ‘fierce’! The Morgan/O’Brien girls have this trait covered in abundance. We salute you O’Brien Family, admire your fierceness & above all, wish precious Rose Eir the first of so many happy birthdays. Much love, The Sharpies XXx

    Like

  7. Ross Armfield says:

    Congratulations Rose and all the ‘participating’ families and friends. This is such a long-anticipated and spectacularly joyous moment. Enjoy, enjoy, enjoy! You brave battalion of Balmain battlers deserve the most special of celebrations! Jane, you and your family have lifted the notion of nurturing and familial care, love and devotion to a whole new level. Heaps of love, Ross, Barb & thomas Armfield. xxx

    Liked by 1 person

  8. Narelle Day says:

    Using an old expression from your grandfather David, ” we’ll done Rose Eir “. Actually it is far better than “well done”, it is “amazingly heart wrenching and so courageous”, that which you have attempted and achieved in your first year of life has shown the rest of us just what a really special little girl you are. Mummy and daddy and your brothers are very proud of you and I know your 1st birthday was a very special one to you and your family. Barry and I wish you all the best that life has to offer, now and in the future and we send love and kisses to all of you. Barry and Narelle

    Like

  9. Caroline Parsons says:

    Wow. Loved the video on facebook of Rose eating the cupcake. She looked so happy and you looked so proud! I’m proud of both of you and all of you. You are just such an inspiration Jane. I know it doesn’t feel like it but you are. You are the most amazing mother in the world. Seriously.

    Like

  10. Maira Widholzer says:

    Happy Birthday Rose! You are such a star!

    Like

  11. Jill says:

    Happy birthday to Rose and indeed you all. Such a journey – but what evidence of a fantastic and worthwhile one are these photos and your tribute Jane. You are all amazing. Love and fond thoughts always.

    Liked by 1 person

  12. Emma says:

    Thought I would stop by again to see how you are all doing- wow, what an absolutely gorgeous baby Rose! I’m glad she is doing so well and looking so genuinely contented and full of humour and personality. It’s a lovely age, so I am learning (FTM and all that!). She and Jack must be quite similar builds – he’s 3rd for weight, 40thish for head and 25th for length which makes for some fairly interesting clothing options! (Put some 000 leggings on him today only to realise they fit his waist but were knickerbockers in length-!!). Anyway big best wishes to you all x

    Like

    • Emma says:

      Sorry that came out a bit funny…. It’s just lovely to feel the love that comes out of your writing and photos- and I’m so glad 2013 is in the past. What a year- and what amazing people you all are.

      Like

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