Gwenyth our baby girl
(and her Aunt and Uncle)
the short story of this blog that became my place to vent "behind the scenes"
the short story of this blog that became my place to vent "behind the scenes"
(meaning I don't share this blog with people I see on a daily basis...
I hide over here on TZ when I need to spend a moment wringing my heart out)
I hide over here on TZ when I need to spend a moment wringing my heart out)
Gwenyth is our second baby girl, our second daughter.
She was born on March 17th, St. Patrick's Day. We lost her on May 14th, 2010. Gwenyth was just shy of two months old.
She left so unexpectedly while being "prepped" for a helicopter ride to a near by Children's hospital. She had some symptoms that concerned us and subsequently her pediatrician, who requested the transfer.
Gwenyth was born with a congenital heart defect (CHD) called Truncus Arterious type I complicated by a severely dysfunctional valve (the one that would normally be used as the Aortic valve). Induction was necessary at 37 weeks (if she made it that far) to attempt to save her life.
One of the worlds top pediatric heart-surgeons repaired her heart two days after birth. It was complext and she would need more surgery as she grew...but she pulled through. She recovered beautifully even as the doctors questioned if she would make it to birth. Our little Gwenyth was discharged April 5th. We stayed in Philly a for a week or so. We moved back home to Virginia by the time she was one month old.
One of the worlds top pediatric heart-surgeons repaired her heart two days after birth. It was complext and she would need more surgery as she grew...but she pulled through. She recovered beautifully even as the doctors questioned if she would make it to birth. Our little Gwenyth was discharged April 5th. We stayed in Philly a for a week or so. We moved back home to Virginia by the time she was one month old.
All her doctor visits and echo's showed a heart beautifully, expertly repaired and functioning top-notch, minus a few small, expected issues that were just something to watch but causing no problems.
Based on the little bits of info the doctors have to go on, it appears to be a virus that took her life. No huge symptoms gave us any foreknowledge and it was too late by the time we took her to the doctor.
We were packing for to meet her when the helicopter landed - it was an hours drive, we wanted to get there.
Instead we had to sit a red light waiting to-get-to-her- just down the road. They had called to say her heart stopped. When we got there they had already been working for about 10-15 minutes. The sight of my baby girl, cold and lifeless with her "soft spot" going up and down as they desperately tried to get life back in her body - it is a source of endless tears and anguish every time I recall those moments and all that followed.
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Later that evening we would be host to more devastation as we learned the news no one wanted to tell us. Two hours after she died, far away in another place, "M" her dear Aunt, just 19 years old, also passed away. Our sweet M, it seems, slipped of a steep ledge in a beautiful woods where she liked to go to clear her mind.
She was there with a friend, in-part, to grieve the loss of little Gwen, lost before she had a chance to meet her. I'm so not okay with this on any level, I can barely write about it... I spend time working to remember her laughter but mostly fight down the knowledge that in my nightmare of what happened to my child, I also lost her... I watched her grow up, I've know and loved M since she was 7 years old.
In October our hearts broke again and severely, with the sudden loss of Gwen's dear Uncle W. He took his life after a long struggle with bi-polar disorder. My husband, with one of his sister's, tried to get to him during a time of particular distress caused by his God-awful disease. They were too late. It is unbearable - the whole of it - every part of the "story" that is our reality. We had so many good moments with him last summer on our visit down South - despite the hell we were all in - he had a wonderful girlfriend - I thought for sure, she'd be my new sis-in-law.
Lillian Lane is my wonderful and amazing other little girl, born so healthy and strong, Dec. 14th 2007. The joy of having Lil does ground me in this grief - if only because I have a responsibility of her to raise her believing in Hope regardless of the way I feel while my soul aches and struggles for breath.
