Cinderella Baby

Today is the last day of Ashley's treatment for this rejection. The very last of the harshest drug she has ever been exposed to is running through her veins at this very moment. Mixed emotions about that. I asked today's surgeon if we could try again if we found out that this didn't work. He shook his head no and said, "As far as I'm concerned we have given her more than enough for her lifetime. There will be no more. We have taken her as far to the edge with this one than should ever be allowed. Now we wait." Wow. We're done. If this doesn't do its job then he can think of nothing else. Unless...he sees a little improvement then he might consider a few rounds of Ritaxamub(one of the chemo drugs she took). Its unlikely though in his opinion that we will do anything other than wait from here on out.

We spoke for a long time. "we are backed into a corner with this little one". Those were his words. He was talking about the lack of access in her body to any central veins. "Her life time has been severely shortened by this finding. She won't grow up unless this bowel heals and decides to function for her body once again. I'm sorry, Trish. Its the nature of what we are doing here." I asked him if there was anyway he would support us in attempting another transplant. He looked at my "cinderella baby" lying on the bed and said, "if this child looks like this 6 weeks from now and we've seen no function come back I would be willing to open up her chest and place a line directly into her heart as we began a second transplant." Of course the risks of this are SO GREAT. Organs would have to become available. That means another mommy lives the nightmare I am trying to wake up from. They would have to close her chest obviously and then place a line into her liver. It too is full of high, VERY HIGH risk, to Ashley Kate, but like he said when you get to place that we are in its time to take those risks to allow her another chance. Our discussion went on and on and on. We talked about life with a dead bowel inside and living on TPN until her liver died as well or we lost access. We talked about ex-planting the bowel. Living without one and going home to live for as long as her body could keep going without a line infection and liver failure. We talked a lot. I cried. He shook his head. Its all he could offer me. There are no easy answers. Only the most difficult of choices. I explained to him that if there was a chance, and if the team believed the outcome could give her quality of life that we were interested but that we would not torture our daughter and ask her to do more than God intended for her to do. The pain of losing her may only be trumped by the pain of watching her suffer at our own hands. I am in absolute agony over these options. We do not know what to do. Again, we are a few weeks away from having to make them. At this point we are just talking, lying them on the table, and thinking them over.

We did a consult with vascular surgery this morning. Just to see if there was anyway to open up any of her veins or not for a second transplant. They will be reviewing her case extensively and getting back to the transplant team.

So many thoughts swirl around in my head. Not a moment goes by that I am not feeling the weight of the entire world coming down on my family. One moment at a time, one moment at a time. Dave and I are trying desperately to live in the moment and not to get ahead of her or ahead of God. Slow down. Savor. Pray. Hold. Kiss. Whisper. Cherish. I remind myself constantly that she's still here.

I washed her hair this morning. She sat up for the first time all week and allowed her mommy to brush and dry her beautiful hair. I slipped her blue gown over her head and laid her back on her bed. I had never seen her appear more beautiful than in that moment. She looked like a "cinderella baby". Her lashes that I adore, sweet, sweet lips, rosy cheeks. Everything about my Ashley's face flooded over me and the tears poured from my eyes. Even though she is 8lbs heavier and her skin is yellowing I think she's amazingly beautiful. She takes my breath away. I rubbed her hands and feet with lotion. Tucked her under yummy smelling blankets and kissed her forehead. Breathing her into myself as deeply as I possibly could. Oh I love this child. So deeply it hurts.

They removed the pic line from her arm today. It didn't work. Her arm was almost 3 times the size of the other and had turned a bluish red. It had to come out. Something as silly as a bad pic could take her from us at this time. The only choice we have now is to stick my tiny girl daily for each and every cc of blood they require. You know how much I hate this. I always have. It breaks my heart, but it was stick her or lose her to a bad line that never worked anyway. I had to chose.

Dave is coming in this weekend. I can't wait to see him. I know his heart will break, but he needs to be with our baby gherkin. I imagine he will curl up in her bed next to her and not get up until his 4am flight back on Monday morning. I can't tell you how wonderful it will be to be able to hug him tightly and hold his hand. I desperately need him.

I could go on and on. So much is happening each day. I try to relay it in little bits at a time so as not to overwhelm you. Its just that this is all so overwhelming. Through our tears we still hold out for miraculous things to take place in the body of our sweet Ashley. Thank you for joining us as we beg her Creator for her life. Just a while longer. We aren't ready to let her go.