Tuesday, June 22, 2010

One Year

“When you have come to the edge
Of all light that you know
And are about to drop off into the darkness
Of the unknown,
Faith is knowing
One of two things will happen:
There will be something solid to stand on or
You will be taught to fly.”

June 23 is as significant a date to me as Margot's first birthday. I see it as her "rebirth" day, the day her heart was lovingly and carefully repaired by the amazing pediatric cardiac surgeons at the Children's Hospital of Eastern Ontario. Today I will share my photos of that day and the days following, and we'll celebrate with a cake...we made it!

We arrived early at the hospital; Margot was hungry (as she often was then), but settled quickly by sucking on my trusty little finger.

This was taken just outside the OR; notice her (too big) hospital gown!

This was one of the hardest moments of the day: handing her off to the anesthesiologist. I shut down around this time. This wasn't denial so much as a survival instinct. I knew there was no way around it: if I wanted her to live, I had to trust other people to take care of her. This was the moment that I stepped off the ledge of all that I know.

CHEO pays attention to the littlest details. A room was set aside just for us, with a breast pump for me, magazines, couches, and a television. My sisters joined Robin and I for the day. A most moving moment was when I opened a giftbag put together by my dear friends at Twig and Toadstool and Wabi Sabi Wanderings, including notes and treats from our circle of mamas. I felt their arms around me that day, and their love and support sustained me. One of the sweetest gifts was a red beaded bracelet from my friend Marcia; she had worn it in labour with her youngest son, and passed it on to me as a reminder that the blood in Margot's veins was mine, and that this would keep her strong during the hours that we'd be apart.



I passed the morning knitting a little heart fairy for Margot, and we all got pedicures (including Robin; guess which feet are his!) from my sister Julie, while getting regular updates from the surgeon's nurse. We laughed and prayed and played cards to pass the time.

After about 3 hours, the nurse came to let us know that the surgery was done, had been successful, and that Dr. Maharajh just wanted to observe Margot in the ICU for a little while before he came to talk to us. He arrived after about an hour. I can tell you what true gratitude feels like, because I almost collapsed at this man's feet. He is the epitome of humility. I told him how hard it was for me to relinquish control and to trust him to do this surgery, but that I knew I had no choice; I can do many things, but heart surgery isn't one of them. His reply? "Well, I don't know how to knit". He gestures to the heavens when praised for what he does; in his opinion, he is "just" using his gift for good. After many grateful hugs, he gave us the go-ahead to visit our girl in the ICU.

You'd think that this was the hardest moment of the day. But I knew she'd survived, and that it was all uphill from here. I kissed her little face, and after staying as late as we possibly could, I went back to my cousin's house (the same cousin who offered her house as a birthing place for Jude!) to spend my first night ever away from Margot. While pumping during the night, I'd call and speak to her own personal nurse for reassurance that she was resting and pain-free.

The next evening, she was moved up to the surgical floor, where she spent a week healing.

Here is the doll I made while I waited through the surgery, wearing the t-shirt printed by my friend Maureen (it's a muscle-bound heart!), and a reminder posted for the nurses. This was to prevent putting stress on her sternum.

Daddy Bear went home the day after the surgery to take care of the older two, and was amazed at how much Margot had healed by Saturday.

Margot had/has what is called "Tetrology of Fallot", a genetic condition that appears in about 1 in 10,000 in the general population, but occurs in 1 in 100 once it is in a family. Robin's grandmother had an aunt who died as a young girl (under 10) from a "heart condition". This would have been about 100 years ago. It is now suspected that she too had this quirky heart: a large hole between the ventricles, a small one between the atriums, thickening of the left ventricle, and perhaps most strangely, an aorta that arches to the left instead of the right.

To patch the largest hole, the surgeons sewed in a circle of Gore-tex. No kidding! This provides a bridge so that the heart cells can cross over and eventually cover the patch. That little circle stays there forever, and Margot's heart will just grow around it. AMAZING! It is even more amazing when you consider that Margot's heart wasn't much bigger than a walnut at the time.

Margot needs annual checkups at CHEO, as she still has a leak here and there, and will live with a heart murmur. I think of Robin's great aunt, and how her mother must have suffered to see her child weaken and die. Babies the world over are born with reparable heart quirks (we don't use the word "defects" in this house). Some of them have access to surgery and others don't. I can't imagine what their mothers must go through, knowing that there is a surgery out there that could save their child's life, but not being able to afford it, or even access it. Dr. Maharajh spends his holidays each year doing a heart-surgery-marathon in his native Trinidad. He brings a team from CHEO with him (also volunteers), and fixes as many tiny hearts as he can manage.

I don't think my child deserved this surgery more than any other child. Am I grateful that she was born in this time, in this place? You betcha. The love, support, encouragement, and hope everyone so generously poured into our family meant so much. It was everything to us, and to this little girl.

Margot looks ahead into a bright and healthy future; who knows what wonders she'll behold?


23 comments:

  1. Wow, what an amazing story.
    It is so true about being lucky and thankful for a strong circle of support be it from friends, family or nursing staff.
    She will behold many wonders I am sure.
    Thanks for sharing this story.

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  2. What a beautiful girl, and an amazing story. I too am grateful to live in this time with all of the medical technology as I have a fatal if not treated condition while I'm pregnant. I know how precious these babies are and you brought tears to my eyes with Margot's story.

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  3. It is so beautiful to see your bright, beautiful Margot in the last photo.
    How precious life is, what a wonderful Dr. you were blessed with.

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  4. Brave Mama ~ thank you for sharing your intimate journey with Margot and what a journey that was...wow. Grateful for her strong healed heart and the bright light she exudes. xo . S.

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  5. I believe
    Fate smiled & Destiny
    laughed as she came to my cradle,
    "know that this child will be able"
    laughed as she came to my mother,
    "know this child will not suffer"
    laughed as my body she lifted,
    "know this child will be gifted.
    With love,with patience, and with faith, she'll make her way."
    ~ Natalie Merchant
    Love you, Margot!

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  6. That last photo is so beautiful, what a vibrant strong, glowing girl! Your journey made me cry, so painful and yet so inspiring. thank you for sharing--- sending lots of love your way.

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  7. Wow. I can't read all of that as it brings me to tears. Bless you, your Margot, your entire family, and more...I will come back and read when I am alone and I can take it all in...K

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  8. Amazing story, what a journey for such a tiny life! My mum has a heart murmer - she is 70 in January and walked 8 miles yesterday!

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  9. Tears plop onto my keyboard as I type this. What a time that was and what a day to celebrate now! The photo of Margot at the end is stunning. Look at her health and vitality and energy! This was the best birthday gift last year, when they came in to tell all of us that it was over and her heart was beating on its own again. And that last photo was the best birthday gift for me this year!
    Thank you for your tender and courageous honesty, Stephanie. You make me proud.

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  10. The photo of your sweet little girl all covered in tubes and bandages made me cry. I really can't imagine how difficult it would be for a mama to have to see her baby go through something like this. I'm so very glad that this story had a happy ending!

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  11. Wow what a brave strong woman and mama you are for having to endure this! Your baby is absoluty beautiful, thank you for sharing your courage with us!

    ~Samantha

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  12. Crying. Lump in my throat. Full of gratitude for Margot, you, your family, friends, the wonders of medicine, and those gifted with healing hands. Thank you, Stephanie -- you are so power*full in your honesty.

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  13. I'm crying in sadness AND happiness. Thanks so much for sharing your family's story.

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  14. What a miracle she is! Sending love, hugs, prayers and gratitude!

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  15. Tears of sadness and happiness while reading this! What an amazing story. She is one amazing little lady. And gorgeous at that!

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  16. I finally finished reading your post....with the freedom to cry about it. Thank you for sharing...such amazing courage...<3

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  17. What a journey. Blessings to you! It is so difficult to hand your tiny baby over to a team of doctors, even if that is the best thing.
    Modern medicine literally saved my son's life (he was born premature).
    Thanks for sharing your story.

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  18. okay...now i'm sitting here crying. what a beautiful, and heart wrenching story of your little margot. your words are so personal and emotional...does one thank you for sharing this? i honestly wish you didn't have to...but i do thank you for just being who you are and allowing us a glimpse of this amazing little girl and her world with her equally amazing family. so glad you found me so i could find you..

    much peace to you all...and happy belated rebirth margot...

    xoxox

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  19. Wow! Little one has been through a lot and will have quite the story to tell (as you and your family does now). It's so great she was born where she could get medical help and I'm glad to see (in newer post) that she is thriving. Blessings xx

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  20. Your story made me cry - you're so strong and inspiring in spite of the pain you went through. I'm so happy you were able to celebrate Margot's 1st birthday, and I'm sure there are many, many more to come.

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  21. incredible. thanks for sharing such a touching story. my daughter had dental surgery at age 3 and underwent general anesthesia. i was a wreck. i can not imagine being where you were. i find it so uplifting that you tried to enjoy yourself while waiting through surgery rather than (just) worrying it away. you are incredible and so is that little margot of yours! ;)

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  22. wow. an amazing story...... and an amazing little girl too. thanks for sharing :)

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  23. Your story made me cry. What a wonderful surgeon that man is, to gather a team of volunteers and spend his holidays doing more surgery elsewhere in the world.

    Blessings to you and your wee Margot.

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