Day 284

Ava's gasses were 77, 70 and 70 again. They didn't do any changes to the vent settings but her gasses went a bit higher than yesterday's and the day before. Ava's nurse today who hasn't had her too much, mostly when she is getting sick or is paralyzed, said she was really crabby during the day and kept giving her drugs to sedate her. I came in tonight and the night nurse didn't want to wake her because of that. But Ava woke up to my delight and she was acting a little spastic which I hear about, but I walked over to her, talked to her, suctioned her trach, changed her wet diaper and she immediately got better. I picked her up and rocked her and patted her back, which I love to do, and she loves as well. She has all these lines from her antibiotics, sedation, and monitors, so it's kind of difficult. I can't wait for the day for everything to be gone and it's just Ava smiling at me. I read her our favorite book "Peekaboo Kisses" which she absolutely stares at and has parts were you can touch and feel. If you haven't seen the book at all I highly recommend it. All babies seem to love this book and they even have a few others, but my little ladies when they were babies, tore the two books we had apart. We put her back in bed in her red seat that helps prop her to an almost sitting totally upright position (depending on how much you prop it up) and I put her monkey around her neck to stabilize her neck and she went to sleep. She kept looking at me when she was trying to fall asleep and it looked like she was thinking "you're not going to be here when I get up and I like you." Maybe she really is getting used to certain people and if we aren't around, she can't help but be sad. Oh how I wish I could care for her 24/7.

Tomorrow they are going to do another bronchoscopy probably in the early afternoon. They are going to put the camera right into the left bronch and spray a steroid right on the spot of her left lung that is bad. They think that it's not getting the pulmicort that she needs because the tube is so small. They are also going to spray another type of steroid onto her left lung that will help clean the lung and get rid of any mucous that is there. This could possibly make her lung grow a great deal, a bit or not at all. Pretty exciting though. Now I feel like we're getting down to business. Coming up with ideas and implementing them.

I also wanted to edit yesterday's post but I couldn't for some reason so this is a video from yesterday.

Last night I found a great podcast from InTouch for Living featuring Dr. Charles Stanley called "The Thrill of Trusting God". It basically told me that if you really, truly believe in God and you have prayed to God to help, and you have had a mental image of the result of your prayer from God, then you must stop asking and thank God for what he is going to do. Coincidentally, a friend of mine told me the same thing earlier yesterday before I even heard this podcast. Now, I'm not sure if I have ever shared this with any of you before, but while I was pregnant with Ava, we were walking out of Target and I turned around to look at my two other little ladies and they were walking behind me in a row, from tallest to shortest, just like little ducklings. I instantly felt like one is missing, and I could just see little Ava walking behind Ariana. I have felt that way for some time and I have shared it especially when I was in the hospital hoping Ava wouldn't come right away. That image has given me faith and a sense that I am supposed to have three living children. God has given me that image and I feel like he gave me one more. I can imagine Ava standing up in front of a room full of people, when she is older, and speaking about her life journey and how God has changed our family and saved her life. I look forward to that day, and hope that you all can be there to see it as well.

Praying for Ava to have peace and thanking God for the miracles he has done and will do for Ava...