Ashley's Story

She will leave fingerprints all over your heart



We are. An absolute feeling of nothing at this very moment. I think Dave and I are both trying to come to terms with the fact that our baby has no intestine. None. How does that happen? Is this even real? I would have never dreamed that we would only be transplanted for 3 years and 10 months. Its devastating. Truly it is. How do we live this life? I've never been in this place before and its such a foreign land. There is no transplant. Its gone.

Tonight I have cried harder than I ever have. I literally vomited again and again. I've often felt a physical illness deep inside of me when my Ashley is struggling, but tonight I could not contain the feeling. The call came out an hour after being intubated that no arterial access could be found yet and she couldn't be opened up until it had and I became so sick. I remained very uneasy and my stomach very unsettled and then my sisters and my brother arrived. Along with my tears I have laughed. I laughed hard. Then I would cry hard. Then I would be sick. Then they would have me laughing again. My emotions are all over the place. You never know when they wheel her away from you if she is ever coming back. It is the most helpless I have ever been and it has happened to me time and time again.

I sat in that waiting room and relived the night of her transplant. We had such hope. We were scared, but the hope that was within our grasp got us through the night. Tonight it was devastating. There was no hope. There still is none. We are facing life without an organ and life with an organ that is already suffering from the very disease that caused us to transplant in the first place. Its very bleak if you think about it, but I'm trying so hard not too. At this time the team will not even discuss the possibility of trying again. 6months is what we are being told before we can even talk.

It is so surreal to be sitting in the very chair that you sat in 4 years ago, but yet have very different outcomes. Its not really happening is all I kept thinking. We've done this before...except...we did it in reverse. We gave her something then...tonight we took something from her. Will I ever be able to live with the knowledge that I allowed them to give up? That I gave up this bowel? I willing put her through this massive operation, but yet she was suffering to such an extent that I couldn't watch her endure it for even one more day. Did this really just happen? Is she really lying behind me on a hospital bed, arms restrained and tied down, with an open wound the entire length of her torso? We are doing this again? An art line? Again? A triple lumen coming out of her groin? Again? Please wake me up. Please. Our baby's life has been changed. Drastically changed. She will never be the same again. My hope, my prayer, my plea is that somewhere we will see her joy come back. Her smile, her twinkly eyes. Please God let these return. We traded her bowel for a chance to see her happy if even for a short time. I could have offered her a life of pain or a life with the chance to feel good again for a little while. I chose the latter. I had to. Please understand that as her mommy I couldn't do anything else. Her cries were breaking us in two. Her body was stretching to its limits before my very eyes. Her bowel was going to explode. It was just a matter of time unless God gave us that miracle. I hope I didn't give up too soon. What if that miracle would have taken place tomorrow? Or the next day? I don't know what was right. I'm being haunted tonight.

We've lost her central line through this process tonight. I can't even talk about it at this time. Just know that today will be very, very crucial to her life span. Without a central line our daughter will not survive. She can't. She has no bowel. She is once again TPN dependent. I think they are taking her back in sometime today.

I know I'm rambling. I am. So many thoughts are swirling around in my head. I'm exhausted and scared and relieved and unsure. I can't tell you what tomorrow holds for my daughter or for our family. I just tell you that God has surrounded us with such amazing people. You are ministering to us with your support and your prayers and even your tears for our gherkin. I can never thank the women who stood by me as I sobbed over her body in pre-op enough. I can never tell my siblings how very much their presence in this place next to us means to Dave and I. There really are no words to describe seeing that much love in action. So selfless. So supportive. So amazing. I am blessed. Kathy, Toni, Chuck you will just never, ever know how very much I love you for being here. From my heart to each one of yours I say thank you. You are blessing me by loving my baby.


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