Last night sleep avoided us. Chad and I rested, allowing our bodies to drift off guiltily...waking quickly as our eyes search out Pipers form and the numbers on her monitor. Each time my eyes opened I remembered...details and parts of the past days and hours.
And as I have cried I have had to focus. Deeply and consistently for fear of falling apart in the face of disappointment. Deeper than ever.
Physically I now know that my right hand and fingers will go numb when my ears hear grievous things...I know to not lock my knees as I will fall over and perhaps never bring myself to get back up again. There is a chance that I will begin to hum the same songs that I sang to my Piper as she slept against my breast and then to move on to the silly ones guaranteed to have her smile and sing along with. My heart will feel as though it has stopped and perhaps it does stop from time to time. It certainly can not feel the full effect of my hurt.
I prayed to conceive this child for over two years. I rejoiced over her conception. I relished her twirls and thrusts on my womb and I eagerly delivered her to the world...I praised God only for her. Each day almost since her birth I have cursed the leukemia that insists on coursing through her small body. Bigger than that even I have loved her in spite of knowing that she would probably never get the chance to grow up. I did this because I love her and hoped for her.
Last night after many hours of medications and fevered brows, Piper was taken off the ventilator and placed on the ocillator. This is life support...this is a very loud machine breathing and working for my Piper. Without it she would not live...she needs it. I need her to have it as I cannot deal with other options at this moment.
Since being placed on the oscillator, Piper has been taken off the dopamine and the epinephrine. Her heart rate has stayed stable as has her blood pressure. They are weaning the nitric oxide and the oxygen pressures in an attempt to place her back on the ventilator. It's a lofty goal.
Today Pipers white blood count is 1000...unfortunately 30% of this is leukemia blast. Not only is she fighting to breathe but she is fighting mass amounts of leukemia which has infiltrated her now swollen liver and is throwing off her chemistries. In a healthy situation they would quickly give her chemo and get her to transplant. Because Piper is more sick that she ever has been she is not given that option at this time...her heart, lungs and liver are all compromised and would simply shut down.
We have small goals of healing organs and attempting transplant. We have the option of taking her off of the oscillator and allowing her to breathe independently until she no longer can. Or we have the option of healing organs and bringing Piper home. Of course, what happened last night can very easily happen again and if it were to, the chance of resuscitation is lower each time. I wish there were no options....options mean wrong choices and I am tired of fearing doing just that.
We continue to breathe in and breathe out and sob. Each moment I hold Pipers needle stuck hand I ache for healing and a future. She is currently alive only because of a machine and this is enough of a cause to sit back in disbelief. I miss my girl...I cannot believe we are here and I cannot formulate many prayers beyond pleading and begging.
Please sweet Jesus.