Day +43 November 4

After a valiant fight for nearly eleven months, darling Elle is no longer on pain medicines,  no lines, no tubes, no machines.  Elle is out of her cocoon of bandages and has flown to heaven with butterfly wings.

Last night at 5:18 PM Elle died in my arms, with her dad whispering loving comfort in her ear.  She held our fingers and squeezed till the end.  She did not look scared, only peaceful.  And she knew we were with her. 

Happy Elle on her first day of the clinical trial, September 13, 2010

Her lines were successfully replaced and working well and her yeast it seemed was finally at bay. But her blood pressures were so low for so long. Her body finally gave out once she was placed back on Prisma and we knew it was time to say goodbye and allow her a calm, comfortable passing. Really, we could not have asked for a better death for her. We were both there, we fought as long as was appropriate, and were able to get her very comfortable and hold her before she died as we haven't done in so long.

Many staff were present.  She had a WONDERFUL care team.  RNs Gretchen & Jody, Dr. Steiner, Dr. Nahara, Dr. Rajpal, Dr. Gupta, Sheena RT, and later Dr's Miller and Tolar, Nurse Alexis were there in the room, caring and  most of them crying. So many other nurses on both the PICU and BMT units took care of her with astounding care. 

Pastor Dale was immediately at our side and Stefan's sister Ginger and Karin soon after.  We prayed and cried and attempted to let go. Pastor performed Commendation of the Dying.  Later Family Child Life and her nurse made prints and plaster casts of her unbandaged feet and hands. Chloe made hand prints as well.  We bathed and dressed her one last time, finally able to dress her with the seams in and without worry of hurting her.

Chloe is doing very well considering. She is so intuitive. A week or so ago, at bedtime prayers, when we reached the part about asking to heal Elle or ease her suffering, Chloe said, " Mama, Baby Elle might go to heaven" and nodded. I was taken aback. I told her, "we are praying and the doctors and nurses are working very hard to help her. She may get much better and some day come home and play with you.  Or, she may go to heaven and have no more pain. Chloe said,"yes, she might go to heaven with Bella". She said this as she was stroking my hair then pulled me down to kiss me. She totally blew me away; a complete role reversal. And she was right. I guess she is much closer to the spirit world than I am, only having been on this Earth for three years. When Family Child Life at the hospital prepared her for Elle's death, she seemed to get it right away. She and her cousin drew pictures to give to Elle.  Chloe's was of swans.  When she finally came into the room, I was holding Elle wrapped in a soft blanket and she walked up and said, "Oh, Baby Elle is born". What a perfect way to put it. She asked to hold her hand, was delighted that we dressed her in the polka dot dress that Chloe bought for her, and held her and kissed her head. It was beautiful.

We will miss her forever and are so comforted in the thought that her short life impacted others so much more than we could have in a long lifetime.

I believe that Stefan's and my grandparents were waiting for her in heaven with open arms. I believe she walks with Jesus and rejoice that she is in paradise without suffering. I believe she knew how much we loved her and always will and will be waiting for us when it is our time. I also believe that worldly time is different from spiritual time and a day unto the Lord is like a thousand years.  Maybe to Elle, no time really will pass until she sees us although it will be an eternity to us.  I believe God is good, and that He is crying with us even has He delights to have Elle with Him again, and will carry us through the pain.  There are so many things that I feel certain of.  It is like light in the darkness.

Her last look at the world

                                     

Elle's hand in Chloe's

Nurse Erin wrote this on the board in Elle's room the first day she took care of her and she was the final nurse to care for her

This was the view from the PICU hours before she passed



We will miss her for the rest of our lives.

                                          
Service arrangements will be announced.  Thank you so much for all of you who have loved and supported Baby Elle.