Afraid to and afraid not to

We had a peaceful night for the most part. Her fever comes and goes and the blood cultures will be a little while still so we wait.

Her stats on the vent are great and they even turned all the settings off for two hours this morning and she breathed on her own the whole time.

Charlie Brown is working!! They have had to empty the bag several times.

I am cautiously optimistic. I’m still struggling because we have seen these things before and within a few hours it can change drastically.

I’m afraid to be off the vent. That has kept her comfortable and pain free and without it I’m afraid we’ll start that pain game again which triggers her respiratory problems and everything is a vicious cycle.

I’m afraid that since the ostomy has output that we will feed her soon. It tricked us before and I’m afraid it is tricking us again and we will feed her and end up with a blockage again.

The bottom line is, we need to move forward and I need to trust. I need to live my verse from Proverbs 31 that my friend gifted to me and be “clothed in strength and dignity and laugh without fear of the future.”

How dare I not praise God for all this progress. He is so good to us. I know that when my eyes are focused on the work He is doing here and not on my fear that I see Him EVERYWHERE. This story has not played out how I would have planned but He is using our precious girl, like he always does, to bring glory to the kingdom of God and I hope drawing others closer to himself. He is for sure drawing us nearer and nearer to Himself every day. It is a constant mental spiritual battle but God wins. It is my choice and I trust him.

I have debated whether or not to share this picture but it’s my favorite. There is so much peace and love in it. She is listening to my friend read her books while resting comfortably in her bed. Gosh, I love her so much.