An Overall Picture

I don't even know at what place to begin.  The information is coming at us almost quicker than I am able to process.  I have thousands of things running through my mind, and questions tumbling out of me with each and every consultation that enters our room.  We've seen so many different doctors in so many different specialties that I seriously could not repeat one single name by memory.  There is so much going on inside of Ash.

I think the best way to get it all out there without writing until I'm weary is maybe to list it all, but not go into detail about each.

Pneumonia
Bi lateral Plural Effusions
Yeast growing from her line
Small Bowel Obstruction
End Stage Liver Disease (bilirubin levels as high as 32)
Loss of 50% of Kidney Function
Spleen massively enlarged
Severe Anemia due to lack of kidney function/spleen/and liver failure
Congestive Heart Failure
Extreme Edema primarily on the left side of her body

but...

I look into the eyes of my baby and I see her.  I don't see the list.  I see her.  She is alive.  She is fighting back.  She is spunky, and irritated, and adamant that she is going home.  In the moments that she is awake she is running this show and letting us know who calls the shots.  Precious girl!  I'm so proud of her.

Today's test under fluoro did not give enough information to make anyone feel comfortable taking her into surgery at this time. If there is a way to avoid opening her up then they are looking for it.   They need to do another test tomorrow under sedation to try and see if the blockage in the bowel can possibly be unobstructed by dilating the loop of bowel.  At the same time they will be doing and echo on her heart to get a better picture of what is happening and to make sure there is no bacteria or yeast that have attached themselves to the valves.  Ashley was so exhausted after today's procedure that she didn't move for hours after we placed her back in her bed. We decided to put off some things until tomorrow simply because she was just to worn out   She slept so hard.

There are moments in the day where I become very, very afraid because of her presentation, but then she wakes up and I know she's ok.  For today, she's ok.

It was a very hard day.  I find myself beginning to doubt our decisions and I wonder if we've made the right choices or not.  I start to feel panicky and unsure.  I hold it all together for a while, but in the darkness with a friend sitting across the room from me I let down the walls and the tears flow without end.  My heart hurts so much, so deeply, its raw.  Raw from the pain of knowing that we will ultimately lose this battle against her broken body and from the pain of knowing that I can do nothing to stop it.  

Despite it all Ashley is stable at this time.  Yes, her organs are getting tired and they are progressing in the disease process, but none of that is keeping her heart from beating, her lungs from breathing, her kidneys from making urine, her liver from processing...for today.  Her vital signs are all rock star status today.  She is uncomfortable, but she is not suffering.  The team surrounding her is working very hard to make her as well as she can be and their efforts have been amazing.  I am so grateful.  So eternally grateful.

There is so much I could say, but I won't. To those who may doubt the life we are living with her... Just know that every day of her life we have done our very best to take care of her, to love her, and to give her a life worth living for.  Never a child has been born that was more wanted or more loved than our sweet Ashley Kate.  I want to express how thankful I am for the kind, compassionate, up lifting words that are being sent to us.  Your expressions of love and prayers for us overwhelms my heart.  Ultimately, I know more than anybody that God will determine the number of her days and that I have no control over that number.  She is in His hands and He will receive her when He is ready.  I don't decide when that day comes.  There is no "letting her go" simply because I am not the one who is holding her.  Her creator is.

Its been a hard day.