January 27th – Heart Day #2

I haven’t blogged for a few days – seeing Genevieve through her 2nd open heart surgery took more out of me than I had expected.  Back in 2010, she was among the last cases of the day and we did not see her in the Cardiac ICU until nearly midnight.  She remained sedated and I crashed on the sleep bench in the corner of her room.  This time, she was one of the first cases . . . which meant that we were able to see her closer to 6PM and instead of being able to finally give in to the exhaustion, she had a 1:00AM removal of the sedation and breathing tube.   Somehow, we powered through.

Much like her first, Facebook was the place to be for updates on Genevieve’s surgery – with all of the love and support from family and friends all over the world, this was the easiest way for us to keep everyone posted.  It was also easier for me to type than to speak to people without completely breaking down.

9:04AM – Having to say goodbye to G as they took her to the OR was so difficult. It took everything to let her go ….I could feel her patting my shoulder as if to say, enough already Mom!!! Clearly she is stronger than I am.

10:34AM – First incision was made ….and so it begins. Prayers welcome.

10:44AM – My symbols of faith, hope and healing. Trying to stay positive and to find peace in the wait.

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12:17PM – Genevieve is on bypass. Praying for a successful valve rebuild / replacement and that she comes off bypass smoothly. I hate this.

1:38PM – No update. Keeping busy and trying to remember to take care of myself, too (with a photo of a cup of soup from Au Bon Pain – anyone that has stayed at Boston Children’s Hospital has a love/hate relationship with the 24 hour location in the lobby)

1:48PM – Small update – they are starting to take Genevieve off bypass. She is not off yet and we don’t know how successful the surgery was …but we are getting closer to being done.

3:13PM – She is off bypass, heart function looks good – no regurgitation (leaking) and no stenosis (narrowing). Dr Baird is happy and we hope to be able to see her in an hour or so. Feeling a bit overwhelmed, teary and thankful.

4:14PM -Arghhhhh. I just want to see my baby!!!!! This waiting is making me crazy.

6:17PM – With my Genevieve now in the Cardiac ICU. She looks like she has been through a war and is still fighting. Hoping to bring her out of sedation and get the breathing tube out sometime tonight.

8:14 PM – Al’s post when Genevieve battled through the sedation with the breathing tube still in: Even while swimming through a haze of medications, my little girl still makes two fists as she opens her eyes.

My response to him: And had her sedation upped twice to get her back under. I don’t like seeing the terror in her eyes like that.

January 28th at 2:16AM – Update on my princess G. The breathing tube is out. She squeezed my hand and spoke to me a little. I got an “I love you”, “where’s daddy?” and a stern “where did you sleep?” – as I had promised her that I would sleep in her room all the nights that she was here. And I will. She’s got this.

There are many blog posts swimming around in my head from the past 6 days, I am going to end this one with my most recent Facebook post on February 1st . . .

February is Heart Month and we celebrated the first day of it by taking our daughter, Genevieve, home just 5 days post open heart surgery. Her strength inspires me. It will carry her through when others try to diminish and claim her power. Her magic is all her own and comes from within. She has got this – always.

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