5 weeks Tomorrow, but Whos Counting?
Today as I sit with our sweet Ashley Kate it astounds me that we will be 5weeks out from transplant tomorrow. Even after all we have been through this past month sometimes it is hard for me to realize that she really did receive the organs she so desperately was in need of. We lived life for so long waiting and wondering if she would ever get the chance to be transplanted that this is a new learning period for us. I will forever be in awe of the precious family who gave so much to us. My prayer is that someday, some way I will be able to hug them and tell them how much their gift has meant to my family.
I don't think you can ever fully prepare yourself to walk down a road like we are on. You go through life thinking that your faith is strong and that your headed in the right direction, and then one day He takes you down a path that shows you just how much you NEED Him. I am so thankful for the lessons we are learning through Ashley's life. I am not sure He would have been able to teach us all that He has and is if we were not traveling this road hand in hand. Today the road has been a little rough for Ashley and for Aunt Toni and I as we struggle to help our sweet girl cope. Ash doesn't feel well after the procedure this morning and nothing we have done has been able to help her. We take turns at her bedside holding tightly to her tiny hands trying to keep her from digging at the new site. Her skin is red and irritated and she has several new abrasions and bruises that just hurt. It must be so difficult for her to understand why she hurts the way she does. I am so thankful that someday we might be able to put all of the hurts and all of the boo-boos behind her, and that she won't remember the hard days. I look forward to having lots and lots of good days to replace all of the yucky ones she has endured.
After 5weeks of living in the PICU, life has taken on a sence of normalcy for me. We have a routine now, and the things that we do each and every day have some what of a schedule. After rounds this morning we developed a plan for the next couple of days. Ash is receiving a dose of medicine to help her cope with the "tremors" a couple of times a day. It seems to work for a little while, but once it wears off it is so difficult to wait until time for the next dose. I am so thankful that Blake and Al do not have to see their baby sister this way. I know their tiny hearts could not bare to listen to her cries. On Wed. she will go down for another upper GI to see if anything is emptying out of her stomach. We are praying that all will be opened and flowing through. If so then we will be able to feed Ash through her feeding tube. This mornings labs were not very pretty. Her new liver is struggling a little with all of the TPN she is on and she desperately needs to have food to help the bile flow out of her liver. If things are not opened then we will begin discussing the next surgery to try and remodel the opening. I am choosing to give this one to Him. I can't even imagine going back into Ashley's incision for the 4th time.
I think the biggest lesson I have learned during this experience is how imporatant prayer is. The prayers of those who have come to know my Ashley can not be replaced with anything in the world. The peace and comfort I feel when I know that people are praying at all times of the day and night for my daughter is unexplainable. I cherish each of your prayers so very much. How wonderful it is to KNOW that we have a Father in heaven who never sleeps and is never too busy to listen to the crys that go out for my daughter. I love Him for allowing me to "know" each of you through Ashley's life. I love Him for giving life to Ashley not once but twice. I love Him for loving me first, and for not needing to know me, but for wanting to know me. How amazing it is to have a friendship with the One who created my Ashley. I will forever be grateful for the lessons on prayer and its power that He is teaching me. Thanks for loving her and for loving Him.