Watching Over Her
Well, its seems as though we are back to where we were last Wednesday after Ashley's biopsies. When you go poking around in those bowels you stir up trouble. Ash is battling fevers, a nasty rash(exactly like the one she had last September while in rejection), and some awful itching. She is calm and quiet and doesn't have much energy to protest as I monitor her vitals. I just emptied over 300ccs of ostomy output and that has been the most at one time in over a year. It just confirms to us that she has something in addition to her rejection that she must overcome.
I rocked her for a long, long time tonight and just concentrated on being there in that moment with her. I felt her piggy tail brushing my cheek with each rock and it made me smile. I could feel her breathe as each breath she took was exhaled into the crook of my arm and I was so very thankful. Tonight she breathes on her own with little trouble and knowing how precious each breath her little lungs take on their own I was truly grateful. She is wearing nothing but her diaper and I could feel the very softness of her tiny body on my chest. She is the sweetest thing ever and feeling the heat come off of her skin onto mine broke my heart. I love this child. I love her so deeply. This child that I prayed for. The one I dreamed about. The one I was given. It humbles me to be her mom. Still in awe of her and all that she is and all that He has done in her life. What an honor it is to be the mommy who is allowed to stand and watch over her as she sleeps.
Tomorrow will hold answers. I hope. Answers to the questions that haunt me as I lay in the dark and try to sleep. Hopefully we will have a plan, a course charted, and know the direction in which her recovery will go. I hope with all that is in me that we do not have to treat her with round 3. It won't be easy. The more I learn of this drug the more frightened I am. I just had to stop. In a few hours I will know if I need to pick it up again, but for now I just needed to stop.
I had such hope. Hope that she could battle this rejection and not get any sicker. Not pick up anything. Not have additional struggle. I guess it was silly to hope for that knowing that she is more suppressed than she has ever been. Her drug levels of immunosuppression are very, very scary. To quote the surgeon, "She has PLENTY on board. Now we have to be careful." Still they made no changes in the dosing.
Day after day Ash and I spend precious moments together in our room. Moments that I might have missed if I were running here and there switching laundry and cleaning up rooms. I'm trying to see the beauty in this situation and if there is any to be found it would be the moments that we have together. Uninterrupted moments to appreciate this amazing little girl. 3 years later I still can't believe she is ours. He picked us. Of all the families in this world, God allowed us to be hers. That is precious to my heart.
As always my heart aches to hold Allie. To hug Blake. To be close to Dave. This part never gets easy. The longing to be with them. To take our sweet Ashley Kate home to them. It never gets any easier. The distance kills me. How I wish they could come. Come to see the pickle they love so very much. It just isn't possible.
Our sweet girl has drifted back to sleep. The medicines giving her a reprieve from the fever and rash. A couple more hours to escape into her dreams. I'm going back to mine too. Bet you can't guess what were dreaming of. Never mind. I know you can.