Nov 30 - Whole Hearted Hope.

Colossians 1:5 "the faith and love that spring from the hope that is stored up for you in heaven and that you have already heard about in the word of truth, the gospel"...I read a devotional today about HOPE. It said, "in scripture, hope refers to the confident expection of good.
In the New Testament it is linked with two other vital words, faith and love".

Before Kaitlyn was born I had a picture of me on a trapeze and before me was God holding out his arms, calling me to let go of the trapeze bar and leap into his waiting arms. As we have been contending for Kaitlyn I felt that God was again calling us to be WHOLE HEARTED in our love and fight for her. That there was no looking back, just looking ahead with hope and with our whole hearts. When God says He works all things out for the good of those who love Him, I feel that as much as Kaitlyn and we have suffered, that the good is that God has been cementing our love for our daughter...faced with the decision to let her go, it just felt wrong. Who are we to decide to take her life. So our only choice and response was to pour our hearts and prayers into
advancing forward despite the risks. I've been using a devotional called Living Life. This month the focus was on 2Chronicles. As I read about the battles they fought I see how the battles we have faced are like the impossible odds the Kingdom of Judah faced, yet the good Kings placed their trust in God and He won the battles for them. In one battle they didn't even have to fight. The enemies picked each other off so that the people of Judah just had to pick up the booty. It took them 3 days to collect everything. I stand on this testimony that speaks about the kind of God we love and believe in.

Another hard truth I have learned is that working out our salvation in the midst of trials is all about a choice. We just have to choose to stand with God and trust that he is good all the time and that He is a BIG God. These are truths and testimonies given by people at NJ that have impacted me significantly.

Today Kaitlyn had brownish sputum coming up from her lungs. They have sent a specimen to get cultured. They have her on a course of antibiotics right now to be preventative against infection. Please pray for no infection in the lungs as this complication would only set her back.

On Friday the doctor had said that Kaitlyn was not a candidate for life support. The breathing machine that is pumping oxygen into her lungs is a form of life support so I thought that meant they were going to turn off her machine if she didn't recover despite the successful procedure on Friday that saved her life. They had said that this procedure was just buying us and her more time...I clarified these ominous sayings today...they meant that further life support wasn't an option but as it is her current breathing apparatus is adequate...had the procedure on Friday not worked out and she required heavier artillary, they weren't going to be able to offer it to her.
I know one parent here with a daughter on heart/ lung machine that requires 3 nurses to take care of her...I guess this kind of life support would not be offered so praise God that Friday was successful and that she didn't require further or more complex support.

She is resting this week. The doctors assured me that they will take care of Kaitlyn in the ICU as long as it takes. This has been reassuring as I was anxious that they would give up fighting for her if she didn't get better soon. The past 2 weeks seem so much longer.

We gave her a sponge bath yesterday and we might be allowed to hold her today...she smelt like a sweet smelling baby yesterday. The nurse also swaddled her. This simple gesture made me cry because this is the smallest normalcy she has had so far. She was so content and after a wakeful period of flailing arms, the comfort of being swaddled soothed her to sleep. She looked so happy, the way it should be for a baby!