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Friday, February 5, 2016

Things are calm

I tend to update a lot when things are scary because the very act of writing about it tends to help me get centered and prepared for the fight ahead so when things are calm, I tend to drift away.  Doesn't seem quite right, does it?  When my kids look back on these pages someday, they're going to want to know where all the happy times are instead of just the bad.  I suppose if I make a resolution to start updating regularly with the good things, there's a high probability I shall fail and still continue to just wander by randomly :\  Hey, at least I'm honest, I guess?

OK, update:
  • Izzy has graduated to cardio visits every two years--she is stable and doing great
  • we had another baby!  Little W joined us in June.  He had a heart murmur at birth but by the time we got our appointment with cardiology, there was no murmur but he does have some turbulence in one of the pulmonary arteries because it makes a sharp turn but he should outgrow that--as the artery widens and the curve gentles, the turbulence will abate.  His echo looked fantastic
  • We moved!  Several states away and while it was scary to leave all we knew behind and have to start over with a new medical and school team, it has been a FANTASTIC decision.  Don't get me wrong, we had an awesome medical team back in our last home but it still felt like we had to fight for a lot of things.  In our new state?  Its so easy to get referrals, insurance covers things our last state didn't, and nothing has been a fight.  I go in prepared to do battle and instead they are suggesting referrals I never even thought of.  The school is the same way!  I had to fight every step of the way before and the new school wants to help and added to their services at their suggestion.  No fighting necessary.  Awesome :)
  • We got a dog, a german shepherd named Mia.  She was an owner surrender and her somewhat neurotic behavior at times makes me wonder if they didn't always treat her the best but she's smart and eager to please and wedged herself firmly into our hearts and family.   When the warm weather returns, we will again get to enjoy long walks in the fantastic hike n bike trails here with her.

Sunday, April 19, 2015

Three years ago today......

At this time exactly three years ago, I was sitting by my daughter's side in the PICU watching her chest rise and fall, hearing the whoosh of the ventilator that breathed for her, watching the various monitors that told me her vital signs, seeing the steady drip drip drip of many medications feeding into her lines.  It has been a long and emotional day and we had been quietly sitting together for a couple hours at this point.  Early that morning I had handed her over to a surgical team, they stopped her heart, they repaired her heart, and they restarted that heart.  She had some rough moments that day--when they tried to bring her off bypass, she had heartblock and came back to me with pacer wires embedded in her chest and every so often the alarms would blare, telling us her heart rate had either dropped very low or soared very high.  But she was there, she was alive, and I waited. 

Today, three years later, I sit beside her as she draws her pictures on scrap paper.  She loves to draw and it doesn't matter to her if she covers the backside of a piece headed for the recycling bin or draws all over a brand new sheet of paper.  She loves ponies and transformers, cars and twirly skirts.  She wants to dance her way everywhere and hates to take a nap in case she misses anything.  She loves to cuddle as much as she loves to go outside and practice kicking the soccer ball.  She is stubborn and sweet and energetic and just full of awesome.

Happy surgeversary, my love.