Just Keep Swimming- Week 5

It has been another long and difficult week. I started the week thinking this would be a week of progress, but again we have experienced setbacks and  difficulties. On Tuesday, Brody decided he was done with his breathing tube and wanted nothing more to do with it so he self excavated himself (coughed it up). Very scary moment. I was watching over him while the nurse was turning him. I saw her step back and call to one of his doctors to give her a hand because his breathing tube came out. Multiple doctors came over and things got crazy. They were grabbing for the manual breath pump, repositioning him, barking orders and rushing around. I stepped back and watched from the side, but felt myself starting to panic, so I stepped into the hall. I knew he was ok. They had already taken the settings way down and were going to start trials to see if he could tolerate not being on it. Seeing them rushing around him just freaked me out and I knew I needed to hold it together. They decided to leave the breathing tube out and put him on high flow oxygen and see how he did. He was tolerating things ok at that point. Wednesday morning he was breathing a little heavy and the surgeon wanted to put him on a different type of oxygen. When I got there they were working on getting him on it. I could tell the nurses weren't crazy about this plan. Once they got him on it he threw a massive fit and could not be settled. His heart rate sky rocketed to over 200 bpm (normal is 120-160). They tried giving him the good meds and it had zero effect on him. The nurse called the doctor over to monitor him and explained what was going on and he quickly decided to abandon this plan and go back to the high flow oxygen he was on. After the fact, the nurse explained to me that system was the equivalent of driving down the highway with your head out the window. Who would like that? It seemed that Brody was taking his medical care into his own hands. Brody's X-ray that morning showed his left chest tube was starting to come out. They had the surgeon come by and remove it and would monitor the fluid situation.

Thursday when I arrived Brody was really struggling to breathe. The doctor came by to observe and talked to me. It looked like we were going back on the breathing machine. I was fine with it because I hated seeing him struggle like that. His weight was back down because now every calorie he was getting was being spent on struggling to breathe. The doctor talked with me for quite a bit and validated a lot of what I was feeling which was mainly frustration. I was frustrated with the set backs and how we weren't moving forward. Brody was now a month old and almost a month post surgery and here we were still dealing with complications from the surgery itself. Needless to say, it was another day where I was absolutely a mess. I just stood over him rubbing his head crying and silently praying. I was praying for God to heal Brody and allow him to move forward in his recovery. I told God that Brody was destined for greatness and we needed to get him through this rough patch. Trey called me shortly after rounds which was odd because we normally text all day because you can't be on your phone in the ICU. We talked shortly and he did his best to reassure me things would get better. Trey decided he was going to go ahead and come to the hospital to be with us. Days like this are when I really need him here by my side to remind me to stay strong for Brody, that Brody needs me strong and focused.

When we arrived Saturday morning, we were told Brody had an eventful night. At some point during the night his right chest tube had come out. Again, the plan would be to do daily x rays and monitor the situation to see if the fluid situation maintains itself our gets worse. Also, Brody's stomach had become very bloated and was extending out. The X-ray showed that it appeared to just be gas. They were going to give him some meds and let nature do its work. While this situation was working itself out, they took him off his feeds. This would be another day of not getting the full nutrition.

That morning the surgeon had come by to take a look at him. He discussed the overall plan of still being to keep him on the breathing machine and focus on putting on weight. His hopes are that some weight and strength can help work out some of the other issues he is having. If this plan ends up being unsuccessful, we are looking at going back in to surgery to repair that aortic valve that is still leaking. The surgeon was hoping to be able to put off that repair until he was one or two. This makes me incredibly nervous. I am not ready for him to go have his second open heart surgery. There was obviously a good reason why the surgeon wanted to wait until he was older/bigger. I worry about how he will recover from that surgery if he is still having so many issues recovering from this one.

On a different note, Trey and I celebrated our three year anniversary. I spent a lot of time reflecting on how far we had come and where we were. We literally have spent our entire marriage trying to get to this point, the point of being a family of three. Trey was convinced we were going to have a "honeymoon" baby and we would get to buy the baby a shirt that said "Made in Disney." Though things didn't work out the way we were hoping, deep down, I wouldn't change our journey for anything. Our fertility struggle brought us even closer together. Having Brody and navigating this journey has convinced me even more that God made Trey with me in mind. There is absolutely no way I could survive this journey with anyone else. He is my rock that keeps me going. Ultimately he is the rock that is holding our new little family together. Brody and I are so incredibly lucky to have him in our lives.


So, pretty much we are in the same spot we were two weeks ago. Brody has a breathing tube in his nose (since apparently he wasn't crazy about it being in his mouth) and we are trying to gain weight. He is back to being under 5 pounds. He is back to being on the IV fluids to help his tummy situation work out. At this point, we are back to not being able to hold him (it's actually been 2 weeks now). When you think about it, we were able to hold him off and on for one week. I can count on one hand how many times I have held, diapered and bottle fed my one month old. They keep saying they think what he needs is "time," and that's not the easiest thing to hear. Still praying for Brody's progress to start moving forward. Brody is the greatest blessing I have ever known and deserves so much out of life. We all admire his amazing fighting spirit and pray that he stays strong.