Wee Harmonee

This love isn't thriving as we all hoped she would. Her condition has continued to diminish over this last week in the PICU. She's been in multiple organ failure. Besides her liver and kidneys her heart and lungs have also suffered. Harm has been on dialysis for a few days. She survived an emergency surgery last night in hopes it would send her in the right direction. She is very sick. The night was steady but this morning she couldn't keep her blood pressure up. Mum and Dad would love a miracle...but are also preparing for the worst with wee Harmonee.

Today her Mum and Dad signed a DNR as well as papers for her to be an organ donor of any viable organs. They hope her heart, lungs and pancreas will be healthy enough to give to another. If we lose one of our "liver kids" to Biliary Atresia, these parents are so loving & willing to give a "heart kid", "lung kid", "pancreas kid"......another shot at life--the same shot London got, the same one we're hoping Harmonee will have. Organ donation is giving them some peace right now.

Harmonee has been in the same room our donor Ashley was in. I pray Ashley will be close by today. I pray for miracles, please do to.

xoxo

lizzie

alpha1, liver mum

Save Lives

WHAT YOU CAN DO TO SAVE LIVES
1. Register with your State's organ & tissue donor registry. To learn how: www.organdonor.gov
2. Speak with your family, friends and colleagues about your decision to be a donor.
3. Encourage your workplace ,church, schools, neighborhood organizations, and city to adopt donation as a mission.
4. Encourage your elected officials to support donation legislation.
5. Speak at your local High School, College or University. Ask them to participate in the National Donation Campus Challenge. www.organdonor/campus.gov
6. Participate in events sponsored by your local organ procurement organization.
ONE organ donor can SAVE the lives of up to 8 people
ONE tissue donor can SAVE / ENHANCE the lives of up to 50 people. Help our returning solders from Iraq and Afghanistan who require tissue for reconstructive surgery

(from YES UTAH website)

Red Cross

I've been privileged to speak at a few Red Cross functions to share LuLu's story. I love promoting organ donation as you know if you read this blog but it's important to remember we cant have successful, life saving transplants without donor blood. LuLu received 9 units of blood during and after surgery. She needed platelets for days. I am so grateful to blood donors, whether or not their blood went to my Lu, in theory it's all the same.

I will continue to do my part to pay it forward and hope that others waiting for their kidney, liver, heart, pancreas, lungs etc...won't wait as long or die trying. I had a rad (you know who you are) guy approach me after I spoke about LuLu and Ashley and said he was going home that day to sign up to be an organ donor. Mission accomplished.

I've made it clear to my James and declare it now to the world that if I can be a donor when my life comes to an end I want nothing left of me. Take my eyes, my face (you know they do face transplants, right?) every viable organ, every bit of tissue and skin on my body. Cremate me or have a closed casket with the coffin nailed shut, I don't care which.

I laugh now, because I've asked my friends who've done my hair for years to make sure it looks good when I die and Kathryn to be sure my makeup looks good when people are walking through and giving their condolences. Please don't leave it to the old lady working at the mortuary to style me up for my final hoorah.... Very vain, I know. Let's just say I've come a long way. Take it all.

****added on by Auntie Julia below*****
This blog post made me think of a recent road trip Lizzie and I took with our sons. We were in the car for 12 hours, and much of that time was spent reflecting on LuLu's diagnosis, treatment, and subsequent transplant. Lizzie is so passionate about organ donation. We started talking about reasons why someone wouldn't want to be an organ donor, and couldn't think of too many. Lizzie got all fired up and said, "When I die, I want them to take it all. My organs, my bones, my face, even the skin off my body. Then, I want an open casket funeral..." momentarily horrified and a little nauseous thinking about it , I looked over at Lizzie like she was insane. It took her a second for her mind to catch up to her words. We busted out laughing until we cried as we talked about the horror of loved ones, especially little kids viewing her open casket without anything left of her. Closed casket indeed!!!