We went to meet with a couple of the doctors at UCSF today who have consistently provided us with their wise counsel through this ordeal. Meeting with them reminded me how grateful I am to them and to all the doctors and nurses who have not only cared for Cora, but who have connected with her and with us. Everywhere she's been she's left a trail of love.
Anyway, after we got back to Packard, and without very much fanfare at all, one of the nurse practitioners stopped by to let us know that Cora had officially been listed for transplant. So I guess you could call today, Day 1.
For those that haven't been immersed in the transplant world, let me share my understanding of how it works. Every child in the country waiting for a heart is listed on a national registry maintained by one organization (UNOS). The country is divided into regions, and within our west coast region the only pediatric heart transplant centers are Stanford, UCLA and Loma Linda. Each child on the list is ranked based on her acuity and on her time on the list. (Cora is ranked as 1A for acuity because she is in an ICU and dependent on multiple IV medicines.) When a heart Cora's size becomes available in our region, UNOS will go down the list, one by one, until a match is made. What we know for certain is that Cora is the only baby her size on the list at Stanford, but we won't ever be able to know if there are babies her size waiting at the other facilities. Anyway, when there is a match for her we will get a call and then we will be onto the next chapter of this crazy story.
Tonight Cora's heart is doing all kinds of funky things as I type this. We've become very accustomed to the sound of her heart beating on the monitor, the different patterns her arrhythmias take -- these things have been the background noise of our life for the last nearly four months. Every time I hear a beep I am reassured. Every time there is a not-normal-length pause, I'm afraid. I am just thinking about how much faith this all requires. With her heart block, sometimes it takes a second for the next beat to come, but I just have to believe and expect that it will.
It surely seems that we have already experienced several Day Ones on this journey with Cora. and will most probably experience others as this long road lays before us.
ReplyDeleteThis Day One however, feels differently. This one, holds our hopes more tightly. God bless you Baby Cora.
And God bless Grammie and Papa... Rough road coming for us all, but we're ready! What a beautiful post, Margie. Thank you.
DeleteI think I figured out a way to comment from my iPad! I think what Margie wrote is beautiful. She is very wise and faithful and we are lucky to have her in our family! <3 Day one is done, we'll just do it one day at a time, and we are all here thousands strong supporting you. Xoxo
ReplyDeletePraying for you. I've also sent out a request to others to be praying as well. You have people all over the country & the world praying for Cora & your family. Much Love. -Marcie
ReplyDeleteIt is hard to understand and even make sense of why our precious Cora as had to endure so much in such a sort amount of time on this earth. She has not had a single normal day since she was born, and yet she is a constant reminder to me to face each day, embrace what is important and disregard what is not.. Cora the Lionheart is the perfect reference to her. She is the true definition of courage, determination and patience. It is like she wears and suit of amour and holds a shield that surrounds her with hope, faith, love and will... I know in my heart and soul she will conquer each battle she faces ahead, and she will prevail. I love you baby Cora. Auntie Re.
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