Friday, July 1, 2011

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Wow, I don't even know where to begin.  Our journey to Portland was filled with so many highs and lows!  I have hardly anything to give, but I wanted to update you all with all that has happened with Daisy.

All I can say is that this girl is so brave and so strong that she is totally one of my heroes.  Other than gaining some wicked awesome navigating skills in order to help us maneuver the nightmare that is driving in Portland (I am so not a big city girl), she handled all that came her way with grace and understanding.

After her first echocardiogram (basically an ultrasound of her heart) the doctor had hope that they would be able to do the procedure.  He estimated that the hole was about the size of a quarter, but he was unsure if there was enough rim to hold the device in place.  The device that would essentially plug the hole in her heart, looks a bit like a squished spool of thread and it requires enough of a rim to hold it in place.  He said, the hole is big, but he thought they could do it.  They would know more when they did another echo (this one through the esophagus while she was under) the next day.

We spent the morning at The Grotto before she was scheduled for her procedure.  If you ever get the chance to visit this national shrine in Portland, all I can say is GO.  Daisy said it was the most beautiful place she had ever seen in all her life and I agree with her!  Can you believe I brought my camera, but left the battery charging at home!

We got to the hospital (I made it sound so easy, lol, didn't I?  That was an adventure in and of itself) and the waiting began.  She was finally called back and was prepped for the procedure.  And then I had to wait alone.  After about 2 hours I got the call.

The hole was bigger than they thought (33 mm) and with virtually no rim.  She was not a candidate for the procedure.  I can't quite begin to explain what that felt like, sitting alone in a hot waiting room without a soul in site.  There are moments in life that call for big hugs and that was one of them.

A few minutes later I was told I could go back and be with Daisy.  She had lots of tubes and an oxygen mask on.  They were able to remove some of the tubes, including the oxygen mask after a few minutes and then I simply watched my baby sleep.

When she did wake she was very hopeful, even smiling.  They had put it the cardiac catheter, the incision they would have used to move the device up to her heart from the major artery in her upper thigh, so she was sure that the procedure had been done.

When I told her that they had not been able to, that was the first moment in all this time I saw her face truly fall.  She was very low after that.  It was late, so they wheeled us to the overnight ward and she and I slept.  When she woke I broke out a little present we got her and a fabulous care package her dearest friend made up for her.  Seeing all the love that was put into her care package brought her smile back and I can never tell you how much that meant to me!

We were discharged with some instructions to her care.  They are so minimal really, I was surprised!  And now we wait.  We wait to hear from the doctor who will do the surgery and wait to hear when we will have to make another trip up to Portland.

She is doing well and her spirit is truly returning.  She is back to her smiling and mischievous self, happy to be back among her siblings and friends.

Please keep praying for Daisy, I can't tell you how much those prayers mean to us, but especially to her!

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