It is so much easier to blog about good news! Late this afternoon, Rachel was successfully extubated. Simply put, the breathing tube was removed, and she has been slowly returning to her silly self. Right now, Ralph is spending time with her in the PCCU.
From last Friday with our fears and tears to this Friday, it seems so much time has passed and yet it has only been one week. We are so thankful that with this one week, we can move from sadness to celebration. The range of emotions is exhausting.
Rachel is still in PCCU, and they are monitoring her tonight. If she continues to heal and progress, then they will make a plan for her to return home.
Being back at Mac, we were reminded of the complicated feelings that we experience with hospital living. Walking those halls, we see a lot of different kinds of sick. There are children pulled in wagons or toddling beside a parent attached to several IV lines. Yesterday, I saw a little boy that lived in the NICU next to Janneke in March 2009 - and he is still in hospital (in the children's ward).
It's hard to explain the complicated feelings; you feel torn between your sorrow with your own child and then guilt because there are other families whose burdens seem so heavy.
But we are so thankful that tonight, Rachel could be held by both Ralph and I, and that her eyes were once again alert. One of our docs said that this experience was only one example of caring for a child with unique needs - what may seem ordinary suddenly becomes risky. He agreed with our goal to focus on both Rachel and Janneke's quality of life. A test is only worth risking if it helps us improve their care and quality of life.
I think we are done with tests. Now we want to bring the girls to a lake, blow bubbles on the deck, go for runs along the canal and chase the geese. We want to be all together at home.
We are thankful for the care from the nurses in the PCCU, for the nursing care here at home for Janneke, and the respite help from Ashley, Kirsten, and Giovanna when the nursing hours were not available. We are thankful for friends and family who helped with Em and Soph, brought meals, flowers, and little surprises (laundry soap and freezies!) and prayed for our little ray of sunshine. These expressions of His love are not forgotten; they help us keep going when we feel like quitting.
We will let you know when Rachel is coming home, and we will continue to keep with updates on our family's life. This blogging thing is odd - a public view of a life we'd rather keep private. Yet we know in sharing our story with you, you are company for us on our journey. Thanks for sharing our joys and our sorrows.