About five and a half months ago, a little baby girl came into our lives that completely altered what we thought we knew about this world. On August 18th, Ruth Elizabeth started us on this journey filled with ups, downs, laughs and cries. A few months prior to her birth, the doctors noticed something severely wrong with her heart. After countless tests and doctor visits, it was determined Ruth had HLHS. At barely 24, my sister somehow had to come to terms with the fact that her baby might not live. As a mother, I don't know how I would have been able to be as strong as my sister. The majority of Ruth's life has been spent at St. Louis Children's Hospital. Several weeks ago, the doctors determined that the only hope for Ruth was a heart transplant. My gosh, even typing that gave me chills. My baby niece needs a new heart. In order for Ruth to even be a candidate for the list, so many things had to happen just perfectly. Since her little heart was deteriorating so fast, her lungs and liver suffered.
The past two weeks, Ruthie has undergone numerous procedures. Procedures I don't even know how to pronounce much less keep track of. A lung biopsy. Another heart cath. Ventilators. Medications. Feeding tubes. Pricks and pokes and awful, awful trials that no child and no mother should EVER have to go through. As she was cleared from one condition, another popped up. The final determination of whether my niece could be on the list was a liver biopsy. All signs were pointing to liver failure. A patient with a failed liver could not receive a new heart, and a patient with a failed heart could not receive a new liver. What the doctors didn't seem to understand is that this is my niece. My sister's child. My parent's granddaughter. My children's cousin. I could not wrap my head around her just living until she couldn't live any more. Ruth could be with us for days or weeks or months but certainly not years unless she gets a new heart. As the hours turned into days, the hope for her to be a candidate seemed to be slipping further away. My ability to cope with this was fading fast.
Two days ago Ruth underwent the final procedure. After extreme testing and prepping, the doctors sedated this teeny, tiny infant; stuck a huge needle into her side and extracted a piece of her liver. Then the waiting began. Two days of constant prayer. Two days of pleading with God to just give Ruth the chance. To please, please restore hope to her family. Two days of trying hard not to think about the alternative to a heart transplant...compassionate care. TWO DAYS!
The news came today to me at exactly 1:53pm. I will forever remember this exact moment in time. As my phone was ringing, I saw it was my sister on the line. My heart leapt into my throat, and I offered up one more prayer as I picked up the phone. As soon as my sister said, "hello," I knew. I could hear it in her voice. That glimmer of hope had returned. Ruth is officially on the heart transplant list!!!! My heart is brimming with joy.
If you'd like to follow Ruth's journey, please visit Life as a Heart Momma. Also, if you are so inclined, show your love and support here in the comments or in the comments here and here.