Two Steps Back- Week 3

Brody likes to sleep with one or both eyes open just to creep everyone out a little and keep them on their toes

 



This week has been a more difficult one. Brody is doing well, but is suffering from some minor setbacks that are preventing him from moving forward in his recovery. Our issue this week is the fluid around his lungs. I mentioned how they placed a tube in his chest to drain the fluid that was around his lungs. When doing so, something got damaged and now all the fats are draining from him. We are still having issues with all that draining. We need it to clear up and heal and it just doesn't seem to be happening at a satisfying pace. Brody started getting a "fat-free" formula and we started working on teaching him to bottle feed. He really was not interested in the bottle and wouldn't take much of anything. Since we couldn't get the fluid to clear up, he has been taken off feeds all together and put back on the IV fluids he was on prior to surgery. This makes him a bit irritable because he doesn't get the satisfaction of having a full belly. Early in the week he came off the oxygen which meant we could get the tube out of his nose. It didn't last long because he started to struggle to breathe because of all the fluid around his lungs and had to go back on the oxygen and is still currently on it. Also this week we found out that his left vocal chord is paralyzed. They don't seem overly concerned because it can be a common side effect of the breathing tube and should fix itself on its own. Because of the vocal chord, the doctors ordered an ultrasound of the neck and shoulder area to check for any kind of blockage that could be causing the issue. Through this process, they discovered he had a clot in his left arm. They started him on blood thinners that helps to stop the spread of the clot and should hopefully get it to clear up. He is on a shot twice a day for six weeks. After six weeks, he will have another ultrasound to see if the clot resolved. If it doesn't, he has another six weeks of shots. If we go home during this time, we will have to give him the shots at home. Not looking forward to that. Right now the shots are hard on him. He has zero fat on his body because he isn't eating and all the fats are draining out of him. Not having any fat for the needle to go into makes it hurt that much more. Brody has lost at least a pound since birth, but we can't focus on gaining wait until this fluid issue is resolved.

The greatest highlight of the week was that we were finally able to hold him. We had to wait a good week and a half after surgery before we could hold him. Way too long. It's been nice to be able to comfort him and snuggle him. It really is the best feeling. I know the family has also enjoyed being able to finally hold him. Since the line came out that prevented us from holding him, that meant he also got moved to a crib. He really could care less about this, but I love seeing him in the crib and it is a bit more comfortable to lean on and interact with him.

This week has been an emotionally trying week. To sum it all up, I am just tired. I am tired of watching him struggle. I am tired of the process. I am tired of having to "visit" my child. I am tired of kissing my baby goodnight and driving across town. I'm just tired. I think I have left the hospital crying almost every night. Poor Trey feels helpless that there is nothing he can do or say to fix it, but there isn't. I want my baby at home with me. The surgeon warned us that the most frustrating part of the process can be the recovery. It takes time and patience. We have watched other babies come, have surgery and leave just speeding past Brody. I know every baby and situation is different, but I just want Brody to get better and truly move forward in recovery. Once we get the fluid from his lungs gone and get going on feeding again we get to move down to the 15th floor which is the big step. Here Brody would have his own room and one of us would stay with him 24/7 with his nurse monitoring him in the hallway. There is a pull out couch to sleep on and I wouldn't have to leave him anymore. This would be his phase before getting to come home.

Brody has the biggest eyes I have ever seen. I sit and stare into them and my heart completely melts. I feel so much love in that one little stare. This is the picture I take home with me, but it brings out both sides of the emotional spectrum. That thought fills me with all the love and happiness, but at the same time makes me sad and feel guilty for leaving him across town. I miss him from the moment I step out of the room until the moment I walk back in the next morning. I know we are moving in the right direction and he will recover at his own pace, but I just wish there was more I could do. I know I say it a lot, but I just feel so helpless.

I hope and pray that this week brings advancements. I pray that this fluid situation resolves and we are able to go back to feeding and can work on putting on weight. He is a fighter and is taking everything that comes his way like a champ. Looking at him you wouldn't be able to guess that he had open heart surgery 2 weeks ago.

 FINALLY!!!

Love when he looks me in the eye

 OH-

 -IO

 Working on our feeding

 Finally got to meet his cousin

 And his cousin went and bought out the gift shop! (Not pictured: "Thinking of You" balloon and Superman balloon)

 One of the pictures from our photo shoot with "First Memories." A volunteer organization that comes and takes pictures and gives you a couple of scrapbook pages of your pictures and a cd of all the images. Really helps to take a step back and celebrate your little one.

 My favorite picture ever! Love this kid!