Round Two! Ding! Ding! Ding! Ding! Ding! (Trey titled this one)

Brody made it through surgery like the champ that we know he is. Surgery day was incredibly long and exhausting. They came and got us from our room around 7 and put us in the holding room. I held him while we waited there to soak up all my time with him. We met with the anesthesiologist and went over a few things and right about 8 am I placed him in the doctor's arms to be taken back to surgery. I did so much better than I thought I would. Leading up to surgery just thinking about them taking him back would make me burst into tears, but I didn't cry. I kinda gave myself a pep talk that morning to stay strong. Brody will be needing more surgeries in the future and he will be aware of what's going on. I needed to practice being strong because he can't have me breaking down when he goes into surgery when he is older. I chocked up quite a bit on the walk to the waiting room, but handled it pretty well. Trey and I both kept to ourselves intitally, and I finally did lose it a little, but once they started giving us updates I seemed to feel better and better. 

The updates seemed to move really slow. It was well into the afternoon before they were actually to his heart and working on it. It takes a while to get him all set up and then it takes even longer to cut through all the scar tissue. They surgeon really takes his time to ensure he doesn't damage anything, and I am ok with that. With this procedure they took his pulmonary valve and made it his new aortic valve. His pulmonary valve isn't normal, but it functions well and they felt like still making that switch would give Brody the best outcome and put him further out before needing another surgery (rather if they put in a fake valve that wouldn't grow with him). They then put in a donor valve that would be his new pulmonary valve. The surgeon told us the valve came from a 5 year old so it was big and would hopefully buy him a lot of time before he outgrows it. It's a little hard to take that in. For Brody to get that much needed valve, a 5 year old had to make his/her way to heaven. We got a card that we are supposed to hang on to that says he has this donor valve. It also provides an opportunity to write a letter to the donor family. I know I plan to write something, but I just need a little time. I don't know how to find the right words to say to that family. Surgery was finally over and we met with the surgeon at 8pm. He was happy with how things went and how things looked. His hope was that Brody would have a good weekend and they could keep him moving through the recovery process. We finally got to see Brody about 9 or 10 and he looked so good. They even had him in the same bed space as last time. All the nurses asked how we managed that. He looked so much different this go around. He had a few less lines and tubes, but I think his size made it less overwhelming. There was more space for all the stuff to go. We didn't stay long because it was late and we were exhausted. We wanted to try and get some sleep while we knew Brody would be nice and sedated. 

Friday morning we came to see him and he had a pretty good night, but we were facing our first possible complication. Brody's EKG was showing an irregularity with ST depressions (believe me I just pretend to know what I am talking about). Anyways, this can sometimes be a common occurance after surgery, but is a little more concerning with the type of surgery Brody has. There was concern that his coronary arteries weren't pumping blood through like they should. During surgery these arteries had to be cut and reattached, so it makes sense for there to be concern. They wanted to get him into the Cath Lab quickly, so they could intervene sooner than later if in fact there was an issue. In the cath lab, they would sedate him again, inject contrast into his aorta, and then go through an artery in the groin to the heart to take pictures of the coronaries and make sure they were functioning properly. The whole thing was only going to take a few hours, so we got our buzzer and waited. Our first update was just that they had him sedated again, and the second one was that they were done. Everything looked good and there was no obstruction. They even called his surgeon in to look at everything and he was very happy with what he saw. So we were back to being on the road to recovery again. 

Over the weekend Brody stayed pretty sedated. He spiked a fever on Saturday, so they did some blood cultures and everything came back negative. Awesome! Sunday his urine output slowed way down and so there was conern that his kidneys were not functioning like they should. We were also back to having issues with fluid in and around the lungs, so they increased his diuretics. This seemed to do the trick and we were back in business. 

Monday morning his fever spiked again and they did a rapid results culture to where we would find out in a matter of hours if he had an infection rather than waiting 24-48 hours. Everything has come back negative with that also. The thought is that after surgery you expect a period of time where they will have a fever. Brody's immune system is already compromised, so it may mean that his time frame is extended. Again, they are being very cautious and not writing anything off.They took out his chest tube today and we are looking at getting rid of the breathing tube in the next 24 hours. Last time we went back and forth with the breathing machine, so they want to make sure he is really ready before they get rid of it. 

People ask us how we are doing and we immeditely start giving the Brody update. They then ask, "but how are YOU doing?" Trey and I are doing well. We feel very cautiously optimistic. We hear good news, but we are still reluctant because of our history. I keep waiting to have the rug pulled out from underneath me. We are so greatful for how things are going though. Everything seems to be moving along smoothely. We both just want to pick him up and snuggle him, but we have a little bit of time before that can happen. Hopefully we will lose the breathing tube tomorrow, and we can hold him then. I keep saying I miss him. I sit here all day next to him, but I still miss him like crazy. I miss holding him (obviously), I miss him being awake and laughing and interacting with me. It will all come in its own time, so for now I will sit here and hold his hand. 

Brody and Daddy

Picture from Cath Lab of his Aorta. Everybody looks at his picture and says "Nice Coronaries!)

Our blanket from Project Linus for this go around

"How you doin?" 

Twas the Night Before Surgery

Brody's first holidays were amazing. It was so nice to get to have him home and share all the festivities with him and with family. I spent a lot of time thinking and trying to implament what I would like to have as family traditions. We nervously decided to take Brody to church on Christmas Eve. I love the Christmas Eve service at our church and really wanted to take him with me to service. I knew there would be a lot of people there, but I figured if I held him real close to me we should be good. It was a great feeling to hold him in my arms and listen to all the carols and holiday worship music. The music was a little loud for his liking, but we made it through the service with no major meltdowns. One Christmas Eve event that I am hoping we will not be making a tradition was our trip to the ER. Right as we were pulling into the neighborhood to come home from my grandmothers, Brody decided to pull out his feeding tube, in the middle of his feeds. Trey and I heard him start fussing and start gagging. I immediately stopped the pump and tried to push the tube back in, but it was so far out that when I touched it the rest came out. Because of the stress involved with putting in a new tube, we have been told to take him to the ER rather than do it ourselves at home, so to the ER we went. I called ahead and was happy to hear that there was no wait. We got there and were taken back pretty quickly. There were some difficulties getting the tube down, but after a couple of hours we were on our way back home. Christmas morning we woke up and opened gifts. Of course Brody is still too little to have a clue as to what was going on, but we went through all the motions anyways. We made two pit stops to see family and just like that Christmas was over. New Year's was rather uneventful as well. We were home and in bed by ten and woke up to all the fireworks to know it was now 2014. 

It was during these holidays last year that our world was turned completely upsidedown. Two days after Christmas 2012 I had my first regular OB appointment where we were diagnosed with the Cystic Hygroma. We have been living this crazy journey for over a year now. It seems like it has been so much longer than that though.

Our cardiologist has always told us if there was any funny business with Brody that we needed to bring him in right away. Around New Years, Brody started getting very irritable. He wasn't sleeping at night and during the day he would just wine and fuss and was pretty inconsoluable. It felt like the only time he wasn't crying was when he was actually sleeping. After a few days of this we finally decided to take him in. Trey was working, so I had my mom ride with me. I took him to TCH downtown because I assumed we would be admitted and I wanted him to be with his doctor and surgeon because they always said if anything came up we would be going to surgery sooner. We brought him in and as I am filling out the paperwork, Brody is screaming. They took him to do vitals and when they looked at his history in the system they decided to admit him as a trauma. They sent us to the trauma room and immediately about 5 different nurses started working on getting an IV and drawing blood. A couple of doctors were asking me all the standard questions and everything was happening very fast. Think about the ER scenes on TV or in movies. The entire time Brody is screaming. I have gotten pretty comfortable with handling situations like this, but even this one was getting to me. After they got all their labs, cardiology came and looked at him and, as to be expected, we were admitted over night for observation. Brody and I made it to our home on 15 and got settled in finally about midnight. The next morning during rounds they said that he looked good. His ECG looked normal, his chest x ray looked the same and though they didn't have blood work back yet, he wasn't showing any signs of infection or viruses. They said as long as we were comfortable that we could take him home. We were good with that. The main thing we wanted to make sure of was that there wasn't anything funky going on with his heart. We also knew he had a cardiologist appointment later in the week. We later found out that all of his blood work came back negative for infections and viruses!

Now we are back at TCH and being admitted for his surgery tomorrow. Though you are never ready to send your baby off to surgery, and heart surgery at that, I am ready to get this done and be able to put this surgery behind us. You can tell that it is time. He isn't sleeping well at night. He has pretty much stopped eating by mouth. He constantly wants to be held and he just naps all day. He is fully awake very little. Nerves are out in full force. They have told us that this will be a bigger surgery than his first one. This time they will be taking his Pulmonary Valve and making that his Aortic Valve and then putting in a fake Pulmonary Valve. He will spend time in ICU and the big question everyone keeps asking is how long will he be in the hospital. The answer... who knows? His recovery the first go around wasn't exactly smooth sailing, but we are praying that the fact that he is bigger and stronger will work to his benefit this go around. He is looking at an extensive recovery since there will be several things they will be checking on and monitoring. I keep asking for an estimate at how long we can expect and I can't seem to get a clear answer. So, tonight we will get to stay with him, and I'm sure none of us will get any real sleep. They will come to his room and get us about 6:30 am and take us to a holding area. When everyone is ready, they will take him for surgery around 7am. I really am anxious about the moment when they physically take him from me. I have woken up in tears thinking about it and I just pray that he stays strong enough for the both of us and isn't screaming. We ask obviously for good thoughts and prayers tomorrow for Brody. He will be in surgery all day and we all will be anxious for the day to go by quickly. 

One of Trey's co-workers dresses up as Santa so we were able to get a picture. We weren't going to be able to because of all the germs of being in a mall around other germy kids

Christmas Eve

Christmas Eve in the ER

Baby's First Christmas

 

Christmas Day

 

Cousins

 

Go Pack Go!

 

Happy New Year! 

 

ER visit #2

 

Playing with my Chistmas present 

 

Snuggle time! Mommy's favorite time of day!

 

6 Months!