Ashley's Story

She will leave fingerprints all over your heart


This Place

I can't believe this is the place we find ourselves in at this time in Ashley Kate's life. Wow! Omegaven is running into her trans hepatic central line for the very first time at this very moment. Its been infusing over the last hour and will continue to infuse at the rate of 6mls every hour until 4am. As I sit here next to her hospital bed and watch her sleep a thousand thoughts run through my head. Most of them have to do with being grateful for this child, this beautiful little girl, my youngest daughter. I look at her resting so peacefully with that dinosaur tucked safely under her right arm and I'm so overcome with love for this tiny person in my life. I am SO grateful for her life. So incredibly grateful to have today with her. To have all of these days with her.

Oh, how I love Ashley Kate. I love her so deeply. So intensely. So wholeheartedly. I love her. I ask her daddy every single day, "Do you LOVE her?" His answer never changes, "Yes, I LOVE her." I don't know why I ask. Maybe its because he is truly the only other person on this planet that can understand how very much I do love her. He loves her just as much. I love to hear him say it. It touches my soul. I don't think I'm explaining it right. We LOVE this child of ours. This gift that was handed to us so many days ago. 5 whole years of days ago. She came out of nowhere and was placed in our hearts by the God who created her. He gave her to us. Just reached out and placed her in my arms. Oh, how good it feels to be given such a gift by her Creator. I have done nothing or will I ever be able to do anything worthy of receiving the gifts He gives to me. I can't fathom the depths of His love for me, but when I stare into the face of my Ashley I feel so overcome with love that I think I might begin to understand? Maybe just a little? There is NOTHING that ever cause me not love her.

Omegaven? Really God? How? I'll never understand how YOU did this for us. For her. I just can't believe this is the place we are in. Do you remember the first time we were told of it? I know You do. You were there with us. You watched us fill out that packet of paperwork. You saw us sign our names to it. You were there. Now look where we are. Where You have brought us. All that You have taken us through to get to this place. All that You will have to walk us through in her tomorrows. I had no idea. I really had no idea. Thank You for traveling with us, beside us, and even carrying us. I don't know how we would have made it to this place or how we are going to make to the places we are going without You.

I'll never forget the decisions Dave and I were forced to make. Omegaven or Transplant? The papers were filed. They were being sent. She had been listed. The call came in. What do you do when faced with such unknowns? What? We didn't know. We really didn't know what to do. Did we wait for to be accepted in the Omegaven study and move Ashley and I out to Boston or did we accept the call for organs and board that flight with our tiny, sick, baby in hand and allow her to be transplanted? How much time did we have?

We had no idea. Ashley was so little and sick when the call came in. She had not yet been accepted in the study. It could be the miracle we had been praying for or the transplant could be that miracle. Obviously we took the organs.

I wonder if we made the right decision. Here we sit back in that place needing a transplant for our daughter to survive. Its too late to go back and change it. Her native bowel was removed and there is no longer a bowel inside of her body. "Once you pull the trigger you can never un pull it". Those were the words of our physician who recommended us for transplant to the UNMC transplant team. He knew what a rocky road lie ahead for our girl and yet he could not tell us which path to take. No one could. We had to decide. God had placed her in our care and we were charged with making the decision. I wonder.

I'll never know. It does no good to even think about such things, but yet as I sit here and watch this "miracle" infuse into her body I can't help but wonder. Was this the plan all along or did we do something wrong? Not wrong, thats not the right word. We have always had her best interest in mind when deciding what direction to take. Its always been about life. Giving Ashley Kate the life she deserves to live. A life filled with love, with laughter.

I don't have the answers. I don't think anyone does. I just can't help but think of the paths we have walked with her and the ones that we have still yet ahead of us. The Father has done amazing things in her life and He could still do more. So much more. There are some very rough days ahead for our family, for our baby. This month is filled with so much joy and still so much pain. We appreciate each and every prayer whispered for us during this time. I don't know what is going to happen come December 28th at 9:30am as they take our girl back to see if there is anyway to save her life. I have no idea what will happen when the team of surgeons sit and meet and make decisions. I have no way of knowing if this line that is currently in her liver will continue to do the job it was placed to do or not. I know its looking as though our time with it is running out. I have not yet shared any of what is taking place with the appearance of her line. Its too uncertain to really discuss. All I want to do is ask you to pray. Pray that it will last. Pray that we don't lose it. If we do then we lose so very much more than a line.

Wow, this got really intense. Sorry about that. I intended to share the news that the Omegaven was up and running. I'll post pictures later tonight.


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