Friday, 23 May 2014

The fiesty, five pound Girl Wonder

This will be quick, as I have five lbs of soft, rosy, delicious smelling, euphoria-inducing magic sitting next to me waiting to be cuddled.

In brief (and in response to popular demand): we are home. After four weeks of NICU (which, I am not going to lie, were hellish and overwhelming; more on which later), our Girl Wonder was released from hospital yesterday. It's beginning to dawn that she is really ours, that she is here to stay.

Just as her prenatal predisposition suggested, she flew past every hurdle with flying colours. At less than 48 hours old, she underwent surgery to repair her duodenal atresia and although we were told not to expect too much too soon, was feeding through her stomach and managing to use her bowels before her surgeons predicted. At two weeks old, when her drainage tube was removed and we were told that it would be slow going, she managed to defy expectations again and master the art of breastfeeding within a matter of days. At three weeks, after her most recent brain scan, she proved how inconsequential was that initial diagnosis of ventriculomegaly which sent us into a tailspin what seems like many lifetimes ago now. Her ventricals are holding stable and are not expected to affect her development. And the Down syndrome?`Right now it doesn't feel like a big deal. She is beautiful and perfect and exactly who she is meant to be, and so we will wait and see how her own unique challenges and talents unfold. (Although allow me a moment of maternal bragging in saying that there too, she has exceeded all expectations for what is 'normal' at this stage for a child with Trisomy 21.)

She is still on partial tube feeding and H and I have mastered what seemed like scary, medicalised feeding procedures only a few short weeks ago. But she has also steadily put on weight, and although still adorably, mind-bendingly tiny, she now weighs over five lbs.


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In those first days after her birth, as we marveled at her resilience and tolerance for invasive medical procedures, and she was wearing one of those little masks that go with the photo-therapy many preterm babies receive, we joked that she looked like a miniature superhero a la Robin the boy wonder.  And truly, her super-hero-like qualities made this an apt comparison. One of her nicknames has become her name preceded by the capital S adjective Super. And so she is.

Her given name is a traditional but uncommon one, and so I've been wary about broadcasting it here. And thus, for the purposes of this blog, she shall be known as the Girl Wonder. (Incidentally, I am not yet sure what will become of this space. There is a big part of me that thinks that her story is now hers to tell. There is another part that thinks she deserves to be shared with the world, and to hopefully inspire hope and confidence in others who may be experiencing some of the challenges that we faced in getting here, to her. There is another part still that is so chronically sleep-deprived and awe-struck by my own offspring that blogging comes faaar down the list of priorities right now, and thinks that's as it should be. And besides, I'm really not sure if I have a mommy blogger in me...But on all this, we shall see...)

For the time being though, know that in  our un-showered,junk-food-eating, sleep-deprived, befuddled and overwhelmed state, never has all seemed so right with the world. That we are thankful for your love and support. That, despite my own slow recovery from the c-section and a bout of endometritus (I am not, it would appear, as resilient as my daughter these days), we are beginning to thrive. That life, such as it temporarily is, feels crazily, heart-bustingly full.


A fitting first gift from a proud grandma

20 comments:

  1. Sadie, I love this post! I love that Girl Wonder has surpassed the docs' expectations. I love that she's home. I love that you are where you are. I know you're continuing to miss S, but know that you are also loving GW.

    As for your blog, you know that mine has no central theme and that I write about whatever I feel like. No matter what you write about, I'll still be reading.

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  2. I loved reading this post. Yay Girl Wonder!! Love the nickname you gave her for the blogging world. Enjoy every moment, Momma :) xoxo

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  3. This is such great news Sadie, and I can tell your heart is just bursting with pride! Down's Syndrome (which I agree should be re-name Up Syndrome as positive energy is such a prominent feature) is a spectrum disorder and many individuals are highly functioning and live very productive lives!

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  4. Completely overjoyed to hear you are home!!! I remember those first few days after weeks in NICU. They are truly amazing and surreal.

    Thank you for the update on your Girl Wonder. She most certainly is a fighter and I am so happy she impressed her medical team with all her progress. May she continue to bloosom and grow (which I have no doubt she will) while providing moments of pure snuggling euphoria.

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  5. Beautiful! I'm so happy your girl is home where she should be. Big smiles from us and so much love xxx

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  6. So happy to see an update! I'm glad you are all doing well now, and that she is beating expectations like the girl wonder she is :)

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  7. I am so very, very happy for you and your powerful little daughter. Congratulations and enjoy it. Thank you also for sharing a little slice of this joy with us here.

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  8. I am so happy you are home! I have been thinking about your family. I am not one bit surprised that Girl Wonder is leaps and bounds ahead. Congratulations again! Enjoy every moment. xo

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  9. I have been waiting with baited breath for an update and here it is! And what an update! I am so so so happy for you and the Wonder Babe. Soak up all of the cuddles and love.

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  10. What a great post :) She sounds like a Girl Wonder, indeed! So, so happy for the great news on her progress, and that you are all home together at last. Enjoy these days to the fullest. If you decide to keep blogging, we will keep reading, but if you decide to step away there couldn't be a better reason. So thrilled for you, congratulations :D

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  11. Also -- I would love, love, love for you to keep posting because I am so rooting for you and your family. But if you don't keep posting regularly, know that we will all still be rooting for you. And I mean that in the last creepy way an anonymous internet comment can be :)

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  12. So glad you're doing well, and baby is doing great! She's such a fighter. Thanks for sharing this and hopefully you'll get more and more rest. Yay for being home with your little one!

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  13. Thank you so much for the update- it is truly a privilege to receive. Also, please know that whether you chose to continue to share or not, your decision will be respected but won't in any way diminish my continuing to root for your wonderful daughter

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  14. Yay yay yay! So glad you're all home and happy. It sounds like your girl has indeed been endowed with super powers!

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  15. So wonderful! I would love to learn more whenever you feel up to writing.

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  16. This update made me smile! Sounds like she's totally a Girl Wonder.

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  17. Beautiful, beautiful, beautiful. Love this so much - glad to hear everyone is doing amazingly well!

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  18. I'm so happy for you. This post gave me chills, I'm so happy that she is thriving and beating all the odds. An amazing little one, indeed.

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  19. Yay Girl Wonder! I'm so glad that she is doing great and beating everyone's expectations! I certainly would love to see more updates on her and how she is doing, but I know how hard it is to blog with a newborn! :-)

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  20. Glad you came out the other side of NICU and the Girl Wonder is safe and sound at home with you. Well done to all! xx

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