Cora started off today having a bit of a rough morning, but they adjusted her calorie count and one of her medication doses and she seemed to perk up.
Her heart tricks continued and she spent most of the day in her blocked rhythm, presenting new arrhythmias mixed in with her normal crazy ones. For a large majority of the day she had doctors gathered at the bedside staring at her monitors with perplexed looks on their faces. It's amazing and humbling to be at one of the world's premier pediatric heart centers and still be able to baffle people, but Cora has that special gift.
As we wait for a heart to become available for her, we still have a lot in front of us. There are many conversations about the possibility of putting Cora on a Berlin Heart, which is a type of ventricular assist device, or "VAD." If Cora was bigger she would likely already be on one because her heart is very sick and it would greatly help her. Unfortunately she is just so small (just 7 pounds now) that doctors worry the risk would outweigh the benefit. Stanford has never used a Berlin on someone Cora's size. That said we may need to consider it at some point between now and transplant, if Cora gets worse.
We also have regular conversations about the potential need for a pacemaker because of her heart block and rhythm issues. Again, her size and the fragile state she's in give everyone pause in considering these options.
Any one of these things would be such a big thing to contemplate in and of itself, but these are the things we're discussing all day long. These and so many other terrible topics.
Sometimes it just becomes too much and I feel so sad for the life we were supposed to be living, the one in my mind, that I desperately wanted us to be living. And I am so disappointed in the limits I have as Cora's mother. The choices I have are so terrible. I want the choice between having a child who lives in an ICU or having a healthy child. The choice to move ahead with transplant or the choice to take Cora home and have her live, healthy as a horse, until she is 95. But I don't get any of these choices, and instead am stuck with the crappy choices where no one thing seems joyful or much worth choosing.
I just had a kind doctor stop by to talk to me for the better part of an hour about just how hard this situation is. I know he genuinely wishes he could make things better, but he, as well as all the doctors here and everywhere, as well as me and all the parents here and everywhere, are all just running into the limits of what we can do. All I am left with after all the frustration is what I can do -- love the bejesus out of my three kids, pray for intuition, and trust that we are being taken care of, even when we don't understand how.
Dearest Michelle,
ReplyDeleteI didn't realize you had this blog until just now. I just finished reading it. My heart is with you. I remember desperately wishing for normal, praying for it as a child with sick parents, as an adult with a sick sister.
In one moment everything you know is forever changed and you cannot go back. You ache for the life you once had, should have had, but in the same moment you are grateful for the hope that you are able to cling to. The hand that had been dealt is beyond crappy, but the chance for life is real, and hope is powerful.
I see pictures of Sweet Cora, and wonder if God said to himself. This sweet child has many difficulties ahead of her, and is going to need a special mother to see her through this journey. Not just a good mom, but a truly remarkable soul. I don't think God shows himself in making everything right, but more in putting amazing people in our lives so that we are not on this journey alone. As heart breakingly difficult as it is, I cannot imagine a more amazing soul to accompany Sweet Cora on this journey than you.
I wish I had some majic words of comfort, but know that you are on my mind many times a day. We pray for Sweet Cora every night, and for Jason and your strength. We love you, our hearts are with you always.
Sally Warner xoxo
Dear Michelle,
ReplyDeleteI found your blog through Momastery. Reading your words took me right back to my own family's weeks in the ICU with our newborn baby and the months afterward. My son also had heart surgery at UCSF. He was six days old. In two weeks, he turns nine.
I remember the complete sorrow and overwhelming faith I felt. I remember the tubes, the doctors, the open chest after surgery. I remember longing for my old life, not this new and frightening one. You will make it. You will make it through this, broken but stronger, more compassionate, more loving. Your precious daughter is teaching those around her some of life's best lessons. I will pray for you and all who love little Cora Vivienne. Wishing you strength, courage, and love.
-Debbie Stewart
Hi Debbie! Glad you found it. Small world that you were at UCSF. My hope, when I posted on momastery was that my sister might get some hope and strength from others who may have been in the same situation or just for her to know that so many people care. Thanks for your kind words. Amy
DeleteHi Amy -- From what little I can tell about your family from this blog and comments, it seems that your sister is in very good hands. What a blessing that she has so many hearts and hands supporting her right now. You are so welcome. A few words of encouragement are really the very least I can do. I'm just paying it forward. We only really make it by holding each other up. :)
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ReplyDeleteHello Michelle,
Kelli has been keeping me posted (since day one) of everything that has been happening with Cora. A few times I started to write to you and just could not find the right words. After reading your last blog, I decided that I wanted more than anything to let you know how I admire you, Jason and your family. Even after reading your blog, I know that none of us can imagine the heartache and concern you feel for your sweet daughter Cora. I commend you on an amazing job of writing your blog ~~ I hope it helps you as much as it gives all of us an insight to what Cora is dealing with/ your words are "inspirational" and as unlucky as Cora has been with health issues, she is the LUCKIEST little girl to have you and Jason as parents.
I constantly think of my last transactions with you when I planned your family trip to Disneyland. My prayer is now that some day in the future, I will be planning Cora's first trip to Disneyland with her caring, loving family.
Sending you "positive thoughts" and many prayers for this journey you have all had to endure.
Be Strong Baby Cora, you have thought us all about "COURAGE" !
God Bless All of You,
Angela
Some things in life are just so much bigger than us. You and Jason are the best that precious Cora could have wished for to help her navigate thru this difficult and daunting journey that the powers above have decided for her. When the weight of all that is happening seems more than you can bear please know that those of us who love all of you so dearly are there to help shoulder some of the heavy weights thru our hugs, our prayers, our tears, our smiles but most of all the power of our loving embrace. You have us anytime and anywhere... We are there to help carry you when traveling this journey becomes more than you can handle. Hoping our love, concern and prayers help nourish your strength and your soul xoxo
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