10/27/13

Reflecting...

It is so hard to believe that we are creeping up on the one year anniversary of Carla's heart transplant.  I keep thinking about what we were doing a year ago... I had pretty much given up on Carla getting her perfect heart anytime soon and she was doing pretty well health wise.  She was in Kindergarten at the Hutch School, which gave Bobby and I a chance to find some kind of new normal.  We started going to the gym down the street after we dropped her off every day and we were really enjoying our time together.  It had been Carla's whole life since we had any time together just the two of us, and we had been through so much.  We were also treating our time in Seattle as a vacation.  We were taking opportunities to see the sights and enjoy what it was that city life had to offer.  We took Carla to Disney on Ice, Kerry Park, the Space Needle, the Ocean as well as the Sound.  We were doing as the doctors ordered and trying to make our wait enjoyable. Carla was doing well at sea level and was a lot more pink there than at home in Montana.  A part of me even wondered if we were doing the right thing my going forward with the transplant.  But, the other part of me remembered how hard Carla had to fight to live through her plastic bronchitis in March and April of 2011.  That experience was so horrifying it convinced us a transplant was necessary.  But still, with how well she was doing, it was kind of a hard pill to swallow.

On November 14, 2012, after saying our prayers and laying down to sleep the phone (which hadn't been turned off in almost a year) starting singing "We like to Move it, Move it" from the Madagascar movie, which was the hospital's ring tone.  It was Pam, one of the transplant coordinators, calling.  She said, "Jen, do you know why I'm calling at this hour? ... We have a perfectly matched heart for Carla"  And I was like "REALLY?  ARE YOU SURE? I honestly, didn't think this was ever going to happen." ...  "Carla, we have a heart."  Carla cried...  "Bobby, we just got the call, they have a heart for Carla".  I had wondered what it would feel like to get this call... and honestly, how I felt was somewhat disappointing.  You would think excitement, but sending your baby off to have her heart removed and replaced is terrifying!  And we had already been through three open heart surgeries and were very aware that before she got better, she would be worse.  Recovery from open heart surgery is not a breeze.  Plus, there is always the chance that once you get to the hospital, they find something wrong with the donor heart and cancel everything.  All that being said, excitement is a hard emotion to muster up at that point.  We methodically called our family, packed our bags, let Carla play some Wii and finally headed off for what turned out to be one of the longest months of our lives.

Fast forward eleven and a half months.  We are home in Montana.  Carla's oxygen levels are FINALLY in the high 90s, she has grown 6 inches, she can run, jump, climb stairs, gallop, feel her fingers and toes, be around other children, get sick without it being life threatening, she no longer suffers from plastic bronchitis, she has been allowed to play on the toys at McDonalds, go to Chuck E. Cheese, ride in an airplane without oxygen, and sleeps without oxygen, she can walk places without the need to be carried, etc., etc., the list could go on an on.  My reservations about whether or not transplant was the right path have all been erased.  This perfect new four chambered heart has given her the opportunity to be a little girl.  And to have a chance at a long and somewhat "normal" life.  There will always be doctor visits, heart caths/biopsies, echos, infections, pokes and meds three times a day.  But life is still better with a four chambered heart.  We could not be more grateful to the family who let this all be possible...

Love, Jen

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