A Week of Progress- Week 7

Finally, it seems we are getting somewhere! (I better not say that too loud though). This week has been a big and busy week for Brody. This week the central focus was checking on Brody's digestive system to make sure nothing is wrong anatomically so that we could proceed with feeds. On Tuesday, Brody took a field trip down to the first floor for some X-rays. They injected a dye into his bottom and took a series of X-rays to make sure there weren't any issues with his bowels. No issues there! Thursday he went for round 2 of his tests and made a field trip back down to the first floor for an upper GI. Here they would feed a dye through his feeding tube and watch it navigate its way through his digestive system. They would conduct X-rays every 30 minutes for a couple of hours to monitor and see where it went. No issues there! We had the green light to start feeds. He started late Friday on his fat free formula and has been tolerating them well. Everyday they are able to take them up more. This week has marked the milestone of being back up to birth weight! Hopefully as we increase his feeds more and more, the weight will pile on. He isn't pooping yet which we need him to do at this point. It's difficult because we need him to poop, but he doesn't have much in his system to make poop. He is being fed less than one ounce every three hours (he is still getting his basic nutrition through his IVs until he gets to full feeds). Hopefully we can get everything moving in the next day or so. Thursday was also a big day because he got rid of his breathing tube! Yay! He has tolerated being off it very well. He is currently on a C-Pap which basically shoots oxygen up his nose. They do this to help him transition better off of the breathing machine. It's weird to think you have to "teach" your baby to breathe. They have already been able to take these levels down a bit which is great. His other excitement came on Friday when he decided to get rid of his PIC line. This was his IV lines that went into his leg. What they think happened is that he started kicking his feet and got the lines stuck between his toes and basically pulled it out. For those keeping record, Brody has managed to get rid of three chest tubes, a breathing tube and now his PIC line all by himself. That evening during rounds when they reported he got rid of his PIC line all the doctors were shocked. They had never heard of a baby losing his own PIC line before. It's really quite comical and we all had a good laugh. Overall, an amazing week of progress. I hope and pray we keep moving in this direction. I always get a little nervous when we start moving forward for that fear of a set back, but I am trying really hard to just focus on being thankful for where we are in this moment. 

On a completely different note, it is back to school time. I am finding it really weird not being in that groove of getting ready for school and not being at work. I even have started to miss it a little. It just doesn't feel like summer is over. I think I have just skipped summer all together. I sat down and thought about it. I have only been out of a hospital for 10 days since June. I was admitted to the hospital in early June and was there for two and a half weeks. I was released and 10 days later we checked in to have Brody and have been here ever since. Even had everything been "normal," I still don't, know if I would be ready. I don't think any mom is ready to leave their baby and head back to work. The second I take one look at Brody, I miss it a lot less. This kid is my world and I couldn't imagine being anywhere else, mentally or physically, but here. It has now been 4 weeks since I last held him and I am struggle to be patient. We still need a little less going on, but I know my time is getting close. 

  Brody's breathing tube

Brody's new C-Pap machine comes with a fancy hat. 

A Little R&R-Week 6

For four weeks now the plan has been to keep Brody on a breathing machine with some sedation and allow him to just rest and put on weight. Every week though it seemed like there was all this other stuff going on that would prevent him from actually getting the opportunity to store up some calories. Finally, this last week our plan was able to be put into play. Brody has had a very restful week without a lot of excitement. The nurse one day apologized that they weren't doing much and were rather maintaining then moving forward. I told her I was not sorry. There had been a bunch going on every week with him and I was glad he was just able to relax. He has had a really good week and has seemed very comfortable and relaxed.

I mentioned at the end of last week that Brody was having some tummy issues. Last weekend his tummy got huge and bulged out. On his X-ray you could see a large pocket of gas sitting in his belly. They put a tube in his belly that is attached to a suction to help relieve some of the pressure. It went down at the early part of last week and they started him on some pedialite for a few days to see how his tummy tolerated things. On the second day, his tummy started acting up again and so they have stopped that. He hasn't pooped in days. Pooping would help, but at the same time, he isn't on feeds that would make him poop. There seems to be a lot of things that end up working against each other.  Today, he will be going for a special test to see what is going on. It could possibly mean he may have to have another surgery to fix whatever might be going on. I'm really hoping that isn't the case.

His weight has been another area of concern. They don't tend to weigh babies with the breathing tube very often because they don't want to risk the breathing tube falling out or any extra harm. They did weigh him at the early part of last week and he was 5.4lbs, so definitely moving in the right direction there. Hopefully that trend continues.

Prayers for another uneventful week!

No picture this week. I don't like to post pictures when he has the breathing tube in and a lot of other stuff going on. It can be a lot to take in and I don't want people to have that image be what they are focused on. He really is doing a lot better than what his appearance would show. Fingers crossed for a picture next week!

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.

Moving On- Week 4

There is no doubt that last week was the hardest week of my short time as a mom, but could arguably have been the hardest week of my life. So many set backs, but in the end all the decisions that were made were truely in his best interest and seem to have made his situation better. Since my mid week post, his fluid situation has improved. An x ray on Friday showed additional fluid around his left lung, so they went ahead and put a chest tube in on that side. He has stayed pretty sedated and on his breathing machine the whole week giving his body time to rest and store what few calories he was given. This seems to be working well. He is looking a million times better and has a little meat on his bones. He isn't back to his birth rate yet and preemie diapers are still a little big, but he is moving in the right direction. His heart is doing well. None of these problems are a result of his heart function and are just complications from the surgery itself. He did get his stitches and bandages removed and his scar seems to be healing nicely. We want to come up with a fun story for him to tell people about his scar.

 Our goals over the next few days are to lessen his dependency on the breathing tube and hopefully get it removed. We are lowering his sedation to help with that, but that also means he will be a lot more irritable. We will be working on increasing his feeds and calorie intake to get him to gain some weight. Today we will be re-examining his left chest tube. It hasn't had any out put recently and his X-ray shows fluid, so that means it will probably need to be re-positioned. Lastly, this week will mostly be a balancing act of fluids. He is taking in a lot of fluids through feeds, meds and different things, but we have to make sure those fluids come back out as well so he doesn't turn into a marshmallow again. Hopefully we can solve this fluid/chest tube dilemma once and for all. We had a lot of support and encouragement last week which was well needed. I just keep telling myself that when Brody grows up and becomes a famous sports player (a non-contact sport that is), we are going to have one heck of a story to tell on Sports Center! Here's to the hope of a much better week!