The best that hurts

All along this journey something Dan and I have said over and over is, "We are trying to give Danica the BEST chance at a normal childhood and at life." Part of this "best" has included allowing an incredible amount of pain into her world in the hopes of a brighter future. I understand my Father God's heart a little more each time I am asked to walk this girl I would die for into a situation she doesn't understand and will hurt her in the short term. I am asking her to have the same faith in me and my great love for her as my Heavenly Father requires of me as He take me through the valleys.

I'm sitting here in the dark listening to the rough breathing and moaning of my little Danica. She did so amazingly well during both surgeries. All of your prayer was felt in such a powerful way today. Dr. Crone made the first cut at 10:05 am and everything went as planned with the brain decompression. He opened the dura, placed a graft, coagulated the tonsil and sewed in a stent to keep the brain from falling any further. He did not put in a drain. He was able to watch for any leaks, etc. while Dr. Crawford began the fusion. Early this morning in preop Dr. Crawford came in to see Dan and I. He brought a scale model of Danica's skull and cervical spine recreated from her 3DCT. This gave us so much comfort knowing he and his team had been planning for and discussing this procedure for weeks. He used a specially made cable and a bone graft to perform her fusion. The surgery was done in half the time expected. Our little miracle girl astounded everyone.

Coming out of surgery Danica began to really fight to anesthesia and react more aggressively to the drugs. By the time we were able to go see her at 3:30 pm she had become very agitated and managed to pull out her arterial line, foot IV and catheter while fighting the nurses and I. Once we got her settled back down the guy with the stand-in Minerva brace came in to fit her. Let's just say that did not go well AT ALL. The actual Minerva jacket Danica will be fitted for is being specially made and may not arrive for several days. This contraption is pretty horrible and after having the back of your head sliced open is probably the most uncomfortable thing I could imagine having to wear.

Watching Danica go through these episodes is so draining. There is nothing we can do to calm her or help her. We desperately need her to be able to rest quietly and begin to heal. Please pray for her little body to be able to relax to some degree and for her heart and mind to be able to process what is happening to her and around her. Please pray for Dan and I. The pain of watching her suffer is almost too much. We need moment by moment strength to keep fighting for her.

We are so grateful for my parents being here and Dan's dad, Curt, and sister, Mary. They have been an amazing support today. The outpouring of love and prayers from all of you for us is life changing. Thank you! Please continue to lift us up as we go through the next very hard weeks and then the months of healing still needed to make this surgery a success.

C.S. Lewis wrote, "We're not necessarily doubting God will do the best for us; we are wondering how painful the best will turn out to be." I'm not doubting tonight, not even a little. He has proved His faithfulness in a million big and small ways yet again, but oh how this "best" hurts.

I need to go lay with my girl. Our hope remains!