An Extra Special Prayer Request

Last week was a week of setbacks and this week hasn't started off on the right foot. I know I said I would update once a week, but I decided to do a mid week update and ask for a little extra support and prayers. At the end of last week, we were trying to reduce the fluid in Brody's chest. They had taken him off his feeds and put him back on IV nutrition fluids. This wasn't the greatest solution for a baby who desperately needs to gain weight, but it would hopefully solve the fluid issue once and for all. Monday was looking pretty good. Brody's fluid output was greatly reduced and we were headed in the right direction. That afternoon I went to pump and while I was gone his nurse went to lunch. When I came back, I saw a dr and 3 or 4 nurses standing around Brody and looking at a computer. I asked if everything was ok and they said his chest tube came out. We don't know exactly how it came out, but it was out. The plan was going to be to get an X-ray and make sure all was good on the inside. Since he hadn't had much output on the chest tube that day they were just going to leave it out and keep monitoring. If they saw issues later with fluid they would put one back in. He did pretty good the rest of the day and the X-ray didn't show any issues.

Tuesday when they rounded on Brody the Dr discussed that his major issue was that Brody was severly malnourished. With trying to fix the fluid issue, his nutrition was struggling even more. They were maxed out on what he could  be given through the IVs and Brody needed to be able to retain as many of the calories he was given as possible. The dr mentioned that if he showed signs of struggling to breathe that they were going to put the breathing tube back in. They didn't want him wasting all his calories struggling to breathe. He had spiked a fever of 101 overnight so they were going to be running tests to see if he had an infection. I left to go pump and when I came back the nurse said he threw a huge temper tantrum and though he was calm now, his breathing was really high from his fit and we needed it to come back down. I left later to go grab a quick bite to eat and on my way back up they called and said that the dr decided to put the breathing tube back in.

So, as of right now, Brody is back on the breathing tube and staying heavily sedated. They don't want him wasting any energy moving around fighting the breathing tube or trying to breathe over the ventilator. They want him storing all the calories he can. He is already looking so much better. They gave him blood which has helped his color and he isn't looking so wrinkly. Needless to say these last few days have been filled with high volumes of stress and a heavy weight of emotion.  Yesterday it seems all I could do is stand next to his bed and pray and cry. Now that I'm sitting here with him and he's all sedated I wonder if he knows I'm here. Does he recognize that he's squeezing my finger? Does he feel me rubbing his head? Does he have any idea how loved he is?

The Dr's here are amazing and so compassionate. One of the drs we have been dealing with walked by and saw me upset. Brody isn't specifically one of his patients anymore, but he stops and checks on us. He reassured me that it was going to be ok and that Brody would get better. His heart was doing well and everything Brody was going through wasn't  anything unexpected. These were the things they can fix and, in Brody's case, it was just going to take time. Another  dr that has had Brody as one of her patients the longest has been on the night shift this week. When they rounded yesterday to fill in all the night shift people on the cases you could see it was hard for her to see Brody back on the breathing machine and sedated. She had been championing his progress and you could tell the set backs had effected her too.  Seeing and hearing the compassion these doctors have for Brody is comforting. They truly care about him and its amazing to see them have that emotional connection to him as well. It isn't just about the medical stuff with them.

I don't know what this next week will look like, but I pray the set backs are over and we can truely start to move forward again. We have received lots of kind thoughts and support through this process and it truly has made all the difference to Trey and I. There is no way we would make it through any of this without it, so please keep doing what you are doing. Though we may not comment back on  posts or Facebook, every message is read and appreciated. I thank God everyday for all the people supporting us and sharing our story with others to rally additional support and prayers. It is crazy the different random connections that have been made. Some of our favorite stories consist of total strangers that ask about Brody or communicate a message to us. We have even heard stories of Brody being on prayer lists at churches where we have no idea who or how it happened. Truly amazing and a feeling I can't even begin to describe.