The sky is falling...
...and I'm searching for an umbrella big enough to shelter us from the storm that's brewing. In our part of the world a large black rain cloud is lurking overhead and I can't help but expect it to begin falling at any moment. I really don't know any other way to describe what is happening other than this. I'm literally waiting for it all to come falling down. I can't shake the tears, the fear that is welling up inside of me, and the ache that it brings to my heart.
I sat this evening rocking our sweet baby in our living room and fought as hard as I possibly could to keep the tears that are raining down inside of my heart from finding their way to my eyes. All I could do was whisper the prayer of my heart over and over again. Please, please, please don't take this all away. I want us to stay.
I've been grumpy, and irritable, and frustrated all day and it stems from the fear that I'm feeling. I know that I can't change what is happening in my Ashley's body, but I wish with all that is in me that I could. I'm just so tired of starting over, of biopsies, of waiting, of rumors of rejection, of it all. I'm tired.
Ashley will be going back to the OR on Thursday instead of Monday. Her transplant surgeons want biopsies "sooner rather than later". This means that we have no scheduled slot in the OR because it is already full. We are basically on "stand by". That means once all other cases and any emergencies have been completed they will take Ashley Kate back. We've had to do this once before and it left Ash and I in day surgery from 8am until 9pm. It was very, very hard on her. I'm so disappointed about this change. Really I am. Allison has an awards ceremony and other activities going on Thursday and Blake has his first Athletic Banquet ever that evening. I will be missing out on both of them. When I begin to feel the disappointment I begin sensing the feeling that I may miss out on a lot more than just Thursday. If all suspicions are correct then Ash and I may be spending our summer in Nebraska away from Blake and Allie.
The deal is that Ash is tolerating NO feedings into her gut. NONE. In less than two weeks she has gone from full feedings to NO feedings and is completely dependant on not only TPN but also lipids. I HATE lipids!!! I am convinced that it was the use of the lipids in her early life that led us to liver failure and then transplant. The lipids are killing our children and very few people want to admit that nasty little fact, but that is a whole other post. Ash continues to stool out at very alarming rates and is requiring around the clock IV support as well as her IV nutrition.
If you stopped by to see her you would have NO idea that our baby is sick. None, other than the IV pole that follows her around. To look at her sweet face and see her smile is so wonderful, but at the same time her daddy and I know that our "normal" life and her literal life hinges on the biopsy results. We hesitate to plan for much of anything at this time. We are just waiting. You know, for the sky to fall.
We are desperately trying to find a house, purchase it and get ours sold before all of this happens. I want to know where we will be living and know that the stress of it all is not laid at Dave's feet just in case we are gone. Stress levels are high in our house as we do our best to keep it all together in front of the older kids and to still try and enjoy each moment we have together. My deepest desire is that she has a virus and that in some type of miracle things would all turn back around very quickly. Unfortunately, I think time on that desire is running out.
I can feel my heart is on the verge of breaking for the millionth time. I wish it wasn't so hard to live this life, but it is. It just is and I'm not good at pretending that all is rosy when in fact its very stormy.
I wish I could keep Ash out of the OR, out of the hospital, and out of "trouble", but unfortunately she has been given a very broken body and no matter how hard I try I can't change that fact. All I can do is love her like no other. I rock her to sleep each night and pray that life will even out for my child, but to be honest I expect that it probably never will. Just being honest.