Sweet Little Angel Girl: PICU Day 7

Where to start????? It seems as though we have been on an emotional rollercoaster this week. Our sweet child has been through the ringer. She has had a lung and a half collapse, then reinflate then try to collapse again. The PICU staff has worked aggressively on Ava to help her little lungs strengthen. We had a mishap yesterday and two physicians didn't communicate with each other and doubled up on pulling back AG's breathing tube. This caused her to basically be extubated for a while, until they got the second xray back. In turn making her work harder and made her co2 levels increase. In laymans terms, she went without adequate oxygen for to long. Thus was a major setback. I was quite fired up over this initially and very vocal to my friends. Realizing this wasn't doing anything but keeping me in a uproar, I just thank the Lord that they realized it before it was too late. There has been a lot of praying coming from the PICU this time around. That is nothing new from AG's room though. She is fighting and is still here. That is more than some families have. I have to constantly remind myself that at least I still have a reason (Ava) to have something to fight for. That is a struggle that I am having with myself. since they have moved Ava to a private room inside pICU, I am able to stay with her. On saying that, I am doing this blog from my iPad, so please overlook any grammatical errors. This hospital stay seems to be taking a toll on the family. I'm not sure if it is because of the stress, worrying about Ava's daily advances/set backs or the possibility of being here another two months. That's right, another two months. The drs are pretty much attributing AG's diagnosis to her inability to swallow her secretions due to her incomplete esophagus. We have spoke to various specialist about a fix, whether temporary or permanent. All of our thoughts and consults have lead to finding out it's going to be a "go big or go home" deal, literally. We either do nothing and go home and continue suctioning her every 30 to 45 mins or do the esophageal connection surgery that will demand a 6-8 week recovery period in the hospital. I know most of you are thinking thus is a no brainer, but until you physically see the toll thus has taken on our family, the high risk that are involved with the surgery and the possibility that Ava may have her last days trying to recover from a surgery that adults have a problem recovering from,then you can't see the full picture. I am praying for the Lord to lead mine and Bryans heart to the correct decision, with Ava's best interest at heart. The thought of Ava never going home with us is gut wrenching. My inlaws took Trace to our house yesterday to get some things and the first thing he did was run to Ava's room and look in her bassinet fir her. All I can do is cry. Can you imagine what is going through his little mind? He thinks Batson is our home. When he walks in the hospital he says "moma dada". Poor Landon is rolling with the punches. Without my family and friends jumping in and helping with him, I'm not sure he would be as well off as he is. At least in PICU we are able to schedule a time that Landon will be able to come see Ava. I love the fact that they have a child life coordinator that takes your child and shows them the machines prior to them ever setting foot inside the room. This allows them to touch and ask questions about the equipment so they aren't so overwhelmed by it. What a fantastic idea!? We will hold off doing that though until she comes off the vent. Even though she is able to open her eyes, she is still not able to move her head as freely bc of being taped. I guess my thoughts are I really don't want him to see Ava like that. Anyway, Ava has had some amazing first time experiences. She got to fly in a helicopter and she received her first celebrity autograph! A sweet sweet friend went to a children's miracle convention in Washington and told this celeb about AG's story and why she wore a pink bracelet. He signed AG's pink bracelet!!! Guess who? Mark Willis! Thank you Amanda for allowing Ava to have another first :) tomorrow I am making a list of all the things I want to feasibly accomplish with Ava Grace and make my goal, crossing each one off of my list. Send me some suggestions. One thing I really want to accomplish is to take Ava Grace to church. I want her to be dedicated to the Lord and have that connection strengthened. I was baptized the weekend before her birth and it was an amazing feeling! I miss my church and my preacher so much. Bro Mark came to visit us the other day and I felt so blessed that he took time out of his day to travel 2 hour to just see and pray with us. That's a GREAT preacher for you!!!!!! Please keep praying for our strength, wisdom and understanding. Pray for Ava's strength and uncomplicated recovery. The Lord is good in all times and is making the unexpected time we will and have already had even possible.

"I came naked from my mother's womb and I shall have nothing when I die. The Lord gave me everything I had, and they were all His to take away. Blessed be the name of the Lord! In all of this Job did not sin by blaming God".