Home! False Alarm! Back Home!

It's been a while since I have been able to update everyone because honestly I feel like I haven't had a moment to sit down and think. While in the hospital, Trey and I made the decision to give Brody a G- Tube. This would replace his current NG feeding that was going through the nose and instead, surgicallly place one in his tummy. This is meant to be more long term and in the long run is safer and much easier to deal with. It was very obvious we weren't going to get anywhere with the bottle any time soon, so at this point it made the most sense. Before we left the hospital the first time, the idea of a G-tube was debaetd amongst the doctors, but Brody's heart surgeon did not want him going through another surgery the way his heart was. Now that his heart was much better, everyone was on board. It always sucks to have to go through another surgery, but compared to heart surgery, this was a breeze. The day of surgery we sat around and waited most of the day. They had a round-about time they were going to do the procedure, but had to wait for the OR to free up. Our heart surgeon insisted that this surgery take place in the Cardiac OR with a Cardiac anestesioligist just to be safe and nobody argued with that. Once again, I handed Brody over to be taken to the OR at about 3:45, by 5:15 we were talking with the surgeon. Everything went well. They wanted him to spend one night in ICU and the next day we were sent back down to the floor. 

We spent this next week slowly introducing his feeds again through his new G-Tube. His throwing up his feeds had stopped which was very exciting. On Saturday, we were released from the hospital and back home once again. 

Our week at home started off great. We were getting adjusted well and towards the middle of the week Brody started having very runny diapers and then started throwing up his feeds. By Saturday morning, he had thrown up his feeds every feeding since late Thursday night. We decided to take him in to the dr to be checked out, but we both knew what was likely going to happen. After leaving the pediatrician's office we headed downtown to Texas Childrens Emergency Room. I will say the one bonus to our situation is we never have to wait at the ER. We are always taken right away which is awesome because the waiting room down there can get crazy. After hanging in the ER for a while, we were admited, to try and figure out what was going on and to see if they could get him to tolerate his feeds again. Saturday afternoon they stopped his feeds and put him on IV fluids in order to give his bowles a rest. Sunday morning, we started introducing feeds again starting with some pedialite. He did well. No more issues throwing up and we were released from the hospital Monday afternoon. 

We are back home again and working on getting adjusted. He still is intermittenly throwing up his feeds, but it is not every feed. I changed the brand of forumla, but I don't think that did much good. I have no idea what is causing him to get sick. He is on a couple of antibiotics which could be the problem, but I am clueless on how to go about solving the mystery. He just has so many different things going on it's hard to pin down one thing. It's a bit frustrating, but I have gotten used to the smell of puke. He has a bunch of appointments coming up, so hopefully I can talk with some people and try and figure it out. We are starting to introduce and work on solids with Brody. He is all over the place with how he is doing with that. In the morning he does pretty well, but in the afternoon and evening it's hit or miss. He still wants nothing to do with the bottle and screams everytime you put it in his mouth, so we are focusing our attention on his solids. I am in the process of trying to set up his OT and PT services which should help us move along. 

I have been an emotional basketcase lately. Brody isn't sleeping great lately so I am exhausted. No surprise. I don't think you really plan on having a baby and getting great sleep, but it has been rough. I am really hoping we can get to a point soon where he will sleep through the night. On top of being exhausted, I have been really frustrated. The feeding stuff is incredibly stressfull and frustrating. I never know if what I am doing is good and I'm just tired of having to deal with it. When I dreamed of having a baby, none of this was in the plan. I get that not everything always goes as planned, but it's hard to grasp sometime. I feel like I accepted the heart issues and what that would mean for us, but I was not expecting the feeding issues. I was warned during pregnancy that it would be something they would have to work on with him, but because of his difficulty with recovery from the first surgery, everything took a completely different turn. I feel like my enitre life revolves around this pump. He gets fed every three hours sitll and because he has issues with throwing up, they run over an hour. That's a long time to be hooked up to a machine and to try and stay still. A lot of the time he will lay down and nap while his feeds are going which helps, but it sucks to be trying to navigate carrying your baby around while pushing an IV pole or carrying a feeding pump backpack. It is even more difficult to try and get outside the house. As soon as I start to feel bad about our situation, I start feeling incredibly guilty. I shouldn't be so upset because he has a good heart and is doing well. I know there are parents out there going through way worse and would do anything to just have to deal with feeding issues at this point. I try and remind myself of this when I start to get down and to focus on embracing the good that we have.  

Things overall are headed in the right direction. I am in the process of looking at returning to work next school year which is kinda exciting. As much normalcy that we can have the better. I am hoping by that time, our doctor appointments will have calmed down and he will be better adjusted to being home (eating better, sleeping better, moving along developmentally). At the end of the day, all that matters is that I have a happy, healthy baby boy. 

Kisses before G Tube surgery

Our newest sock monkey friend

New G Tube. In a couple of weeks, all of this will be replaced with a little button port that we attach a tube to during feeding. 

A little bored hanging in the hospital, but check out the view of both cheeks with no tubes!

Brody and Daddy's selfie

My nephew Tyler participated in Jump Rope for Heart in honor of his cousin Brody. So proud of this boy and how much he loves his cousin. 

 

Tyler showing off his mad jump rope skills

Play Time

Waiting for some grub in his new high chair

Fairfield opening day for baseball! We are "those" parents that put inappropriate shirts on their kid and think it's hilarious. 

8 months! Finally in the 5th percentile for weight (though we are still behind on our height)

From Blogger iPhone client

Better Recovery

Brody's recovery has been going well, but not without our hiccups. From a heart standpoint, Brody has a baeutiful heart. All the doctors are very pleased with how it looks and how it is functioning. Brody had an extended amount of time on his breathing tube. They did trials here and there to see how he would tolerate breathing completely on his own and we went back and forth and after about a week, we were able to take it out. He stayed on oxygen a few more days, and now he is clear on a respiratory stand point as well. 

Brody has contracted 2 different viruses. The first one is known as CMV and he apparently contracted this before surgery. We spent that one night in the hospital at the begining of January where they did a complete work up and this came back positive from that blood work. They said most people have CMV and don't even know it. If you were to go to the doctor they would just say you have a cold and you would never be tested for it. He was only tested because he was in the hospital and already had a compromised immune system. He gets IV meds twice a day for this and they check his blood weekely to determine when they can switch him to oral meds. While in the hospital, he somehow contracted RSV. Apparently the vaccine he gets every month to protect him against it was not effective. They said a lot of the time vaccines aren't as effective in kids with weakened immune systems. Because he has this he is on contact precautions. While in ICU we had our own private room (with a tv) which made ICU life a little easier. Whenever nurses or doctors come in to mess with him they have to wear disposable gowns and gloves. He isn't on any kind of meds for this, they just let it run its course and manage side effects. The good thing about both of these viruses is that he hasn't had any complications or side effects from these. If you didn't know he had it, you wouldn't be able to tell.

After 2 weeks in ICU, we made it to the floor! This is way better than the 10 weeks we spent in ICU last time. Our biggest struggles are our meds and feeds. Before going home we are trying to get him off some meds he doesn't need anymore and trying to work on our feeding. Eating has always been a struggle and it really isn't going that well. Brody will barely take a pacifier most days which is very different than pre-surgery. We started working with his occupational therapsit and we can't get him to take anything by mouth. At this point, we are able to rule out his heart as being the issue behind the feeding issues. We started him on some solids and he has done awesome with that. The doctor says he may just be one of those kids that goes straight to solids and sippy cups and never take a bottle. Sounds good, but the problem is we are still a ways away from that point. In addition to not eating, he is having some serious reflux issues. After or during almost all feeds he is spitting up quite heavily. It really breaks my heart to see him going through thatThere are still decisions to be made and hopefully we can figure out everything soon so we can get home. 

On a different note, February 7-14th is CHD (Congenital Heart Defect) Awareness Week. In the time I have spent at the hospital and talking to people a large number of people never knew their baby had an issue until something went wrong. The fact is 1 in 100 babies are born with a CHD. That is a crazy statistic because you think you would here more about it, but you don't. In utero, at about 20 weeks the heart is developed enough to check for defects. The biggest thing they will check for is to see if it has 4 chambers. When I was pregnant they said if you can see all 4 chambers, you can rule out a number of very serious heart defects. After delivery, they can do a very simple test to check for heart issues called a pulse oximeter screening. They put this little probe on the bottom of the foot or hand and check to see how much oxygen is in the blood. If there isn't enough oxygen, this can point to a possible heart defect and can lead them to ask for further testing. It really is quite simple. The state of Texas passed a law last year requiring hopsitals to perform this test on all newborns and soon this should be implamented state wide. Be proactive and ask about the heart during ultrasounds, and ask for the pulse ox screening once the baby is born.

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! 

Home For The Holidays!

I realized that I haven't updated the blog in a while and several people have asked about it and how Brody is diong. We spent four long weeks in the hospital waiting for surgery. Brody was scheduled for surgery like 5 different times, but was bumped because other cases would come up that needed to be addressed and were more urgent. They finally decided that Brody was doing well enough and gaining good weight to be able to be sent home and wait for surgery. Originally, they were talking about doing surgery the first couple of weeks in December, but we were able to schedule for January which meant Brody would be able to be home for the holidays. I was having a really tough time in the hospital accepting that we were going to be missing all of his first holidays. We missed out on Halloween, but Brody wore his costume for a couple of hours at the hospital. I felt like I was sitting in the hospital and Brody's life was just passing us by. I was overcome with joy when we were sent home a couple of days before Thanksgiving. Though we were released, we were going to have to be very careful to keep Brody from getting sick and monitoring his weight. He was going to have weekly appointments between the pediatrician and the cardiologist and was going to spend a lot of time at home.

We were able to go visit family on Thanksgiving which was awesome. It was the first time we were able to take Brody out of our house and have him at a family function (though we had hand sanitizer strategically placed everywhere).  I was sad when we got home that night and I realized I hadn't taken any pictures of Brody's first Thanksgiving. I really have to be better about documentation.

Our doctors' appointments have gone well so far. His first appointment didn't show progress in gaining weight, so they gave him one more week and if he didn't make good weight gain we were going to have to discuss moving up his surgery. At our appointment a week later, he was back on track to gaining weight. What a huge sigh of relief. Doctor's appointments have become a two person job. When we are down in the med center there is no way of getting around carting the feeding pump. At some point, I have to feed him and push the rest through the tube. He doesn't like his car seat so he wants to be held the entire time which makes it very difficult for me to set everything up one handed. He is getting better about the car seat though. He doesn't scream the entire time we are driving and walking through the hospital anymore, but it is more of a day by day thing.

I'm very excited for Christmas. It's been difficult buying gifts because I know we are going to open them all and not do much with them for a while since we are going to have to turn around and go back to the hospital. I am trying to project where he might be by the time he is released from the hospital this next time and buy age appropriate stuff. It is going to be more of a just wait and see kinda thing though.

We have had some other big changes recently. The first big change was that I had to resign from my job. I was lucky that I had Brody over the summer because my 12 weeks of FMLA leave didn't start until the week teachers went back in August, so I had a bit more time. Even that wasn't enough though. I was scheduled to go back in November, but we were still in the hospital, so I was left with no other choice but to resign. I loved my job, but I know I am right where I need to be. Now that we know we are having surgery much sooner than we thought (originally we were hoping a year or so down the road) there really wasn't any other option. My hope is that this next surgery goes smoothly, things calm down and I am able to find another teaching job next school year. Our second big change was that we had to get rid of our miniature pot belly pig Brutus. Life with Brutus had gotten really complicated ever since I was in the hospital for two and a half weeks before having Brody. Then we were never home because we were always at the hospital and he got no attention. He started getting really aggressive with people and my furniture and we knew once Brody was home there would be no way for it all to work out. Luckily the breeder we bought him from was willing to take him back, so Brutus will be spending Christmas on the farm.

To end on a positive though, this last weekend we were able to have Brody dedicated at church. I have sat, and cried, through many baby dedications at church and was so excited to finally be able to take part in this ceremony. Through my entire journey to parenthood, from fertility to the present, I have found a deeper relationship with God and my faith has grown stronger. It was very important for me to stand before God and my church and promise to raise Brody to know and love God and share with him all God has done in his life. We all know God has been working overtime on Brody.

We have about a month until we go back for surgery and we plan to focus our attention on spending time as a family before life gets all crazy again. This next time in the hospital will be a bit more difficult. After Brody has surgery, he will spend time back in ICU where I will not be able to stay with him. I plan to try and stay in the Ronald McDonald House in the hospital when there is room and when I can't, I will be sleeping in the waiting room. I'm hoping by doing this I can keep with Brody's schedule as best as possible and be by his bed when he would expect me to be. It's never easy to think about your baby going for surgery, but I'm ready for it. I am ready to get this surgery over with and put this all behind us for a while. This will not be Brody's last surgery, but it should hold us off a lot longer.

Merry Christmas and Happy New Year from the Bishs!

 Happy Halloween

 

 Baby Dedication

 

One extreme to the other-Week 17

We have now been back in the hospital for 2 weeks and have gone from one extreme to the other. The first week we were here Brody had an echo to get a better look at his heart to see if there were any changes. The surgeon stopped by to talk and said that he did not see anything different with the echo and that he wanted to keep his plan of feeding and growing Brody. They decided to do a chest X-Ray to look at his lungs and they noticed that one lung was a little more wet than the other. They put him on a medication that is supposed to help get fluid off and started on CPT. He loves his CPT because they come in and beat on his back to try and break up the fluid. I call it his baby massage and most of the time it puts him right to sleep. This plan of treatment seemed to be working well and his following X-Rays showed a little less haze in that lung. The cardiologist was concerned at the fact that he only had fluid in one of his lungs. Usually you see it in both lungs or neither, so she wanted to do a little more investigating into why it would only be in one lung. She wanted to look at all the vessels around the heart and the ones going to the lungs to see if there was something funny going on. She scheduled another echo and pending those results, we would be able to go home this last Wednesday. I was pretty excited, but seeing as we are still here you can guess how things went from there. He had this other echo and there was evidence that the situation with his heart had gotten a little worse (not even mentioning anything with the vessels at this point). The cardiologist decided to send him for a CT scan in which they would get a better look at the heart and those vessels and actually be able to create a 3-D replica of the heart to get a better idea of what was going on. As of yesterday, those results had not been finalized and posted yet. They put Brody on continuous feeds at night to give him and his heart a break from eating. They would very slowly give him his feeds throughout the night, so that he wouldn't have to burn any calories and purely absorb all the nutrition. This meant he would not have to get up to eat which Mom would get to sleep a little better throughout the night, or so you would think. For whatever reason, I think I was up more with him on continuous feeds than when he was feeding by bottle. I don't know what it was, but he was very fussy all night long. I had them put him back on his gas medicine and that seems to have helped quite a bit. Finally, last night he seemes to sleep much more comfortably. 

What we do know is that the Cardiologist will be presenting his case at confrence to all the surgeons and cardiologists to determine a plan of action on Monday. We were under the impression that they would be determining if they would need to do surgery or how they could better handle his condition medically. What seems to be the case is that he is being presented for surgery to determine what they would need to do for a surgical plan. Last night, they started using the term "pre-op." They have put him back on the heart monitors, taking blood, etc. that seem to be making preparations for surgery. 

Needless to say we are a little stressed and nervous. We knew another surgery was in the plan, but were hoping to put it off for quite a while to get him bigger and stronger. That was always the surgeons hopes. With the potential for surgery so soon, it is really scary. The fact that we are having to do something so soon means that whatever they come up with will be a temporary fix and will need to be updated later on as he continues to grow, so more surgery. We endured a very long and complicated recovery after his first surgery, so I am nervous what it would be like going through surgery again. I'm just not ready to go through all that again. That sounds selfish I know, but in all honesty, I'm not ready for him to have to go through all that again. I try so hard to be positive and optimisitc, but it is a day by day, moment by monent struggle. Sometimes I feel so overwhelmed and like I'm failing miserably at being a mom and other times I feel like Super Mom. There are just too many different emotions and things going through me. I am just so ready to take this baby home and let him live a normal life. But will he ever get a "normal" life or will we always live in the shadow of this hospital? I am so greatful for all the doctors who follow him and are deciding his plan of care and I trust them completely. I know they have his best interest at heart. I pray that God gives them the knowledge to make the absolute best decision of care for Brody, I pray that God heals Brody and protects him throughout this process. I pray that Trey and I keep our sanity. I pray more for Trey in that he is having to work and deal with the stresses of that on top of the stresses of Brody's condition. It takes a toll on him I know, but he is an amazing father and husband and makes it all work. So, please continue sending up those prayers for Brody like so many of you have been doing all along. There is so much glory to be seen in what God has done so far and I pray for continued blessings. 

Brody passed out after his echo

Happy Halloween. Didn't get to go trick-or-treating, but at least he got to wear his costume for a little while. 

Too cute for words

Happy Babby

Snuggle time with Daddy

6am play date

He was hoping if he wore camo they wouldn't be able to find him to do blood work. 

Here We Go Again- Week 15 & 16

Our two weeks at home have been busy with adjustments (hince no blog update). I told Trey that first night back there would two things I would never take for granted, the softness of our bed and our tv. We all settled in quite nicely. Though I had been getting up to feed Brody in the hospital, for some reason I was way more tired doing it all at home. Brody adjusted quite nicely. He took off with his feeding and was a real rock star. Within one week we were able to take out the feeding tube and let him do his thing. We slowly were taking him out a little bit, but not too much. We still didn't want to expose him to too many people for the risk of getting sick. Still it was nice to start to live a normal life outside of the hospital. 

We had been going to multiple appointments a week trying to let everyone take a look at him and monitor him. That first week we saw the pediatrician and hematology( blood clot people). These were my first trips out in public with him and I was doing it on my own. Lots of work trying to hold him because he doesn't want to be put down and get bottles together and push a stroller. The second week we had another pediatrician appointment and a cardiology appointment. The cardioogist appointment was a little overwhelming. Our cardiologist is the same dr who did my echos when I was pregnant, so she knew our background. She said the night before our appointment she spent quite a bit of time reading his file from his hospital stay since she had been gone most of the summer. She told me that his echo was conerning particularly that leaky aortic valve. She said that if someone came in off the street with a heart looking like that she would be admitting them to the hospital. Not the most comforting thing to hear. We talked for quite a bit and she said she would be getting with our surgeon to discuss his outlook and plan for Brody so she would know how best to monitor us. She said she would be monitoring him very closely which meant we would be seeing a lot of each other as she wasn't comfortable going more than 3-4 weeks without seeing him. I could live with that and would actually feel better knowing he was being so closely monitored. 

Well, over the weekend Brody started slacking on his feeds. There isn't a whole lot of wiggle room since we are trying so hard to get him to catch up on his growth. By Monday, it had gotten to the point where he was finishing less than half a bottle (and we now didn't have a feeding tube to give him the rest). The cardiologist had said she wanted us to call with the slightest sign of funny business, so we decided to give her a call. They wanted us to go ahead and bring him in to be checked out and deep down I knew what that meant. 

We have now been admitted to the hospital again. For now, they will be putting the feeding tube back in and monitoring him, but the surgeon and the rest of the cardiologist team will be developing and implamenting a plan for that aortic valve. Trey and I feel comfortable with him being here because he just didn't seem right this last weekend, but are very nervous and scared for the road ahead. I am not ready to send my baby off for his second open heart surgery. I really was hoping we would have more time in between, but it doesn't seem like that will be the case. I am trying to stay calm and not panic, but it's very scary. So, here we go again. So many people have been praying for us along the way and we desparately need the prayers to continue. I don't know exactly what will be going on and how quickly things will happen, but I will try and update as soon as I have more information. Thanks in advance for the love and support. 

First Sunday Football Watching! Guess who got him dressed in the morning!

Snuggle time with Daddy

He tolerates being put down to play for all of about 10 minutes

Tummy Time

I love when we get to snuggle like this. You know he is sleeping good when the padifier falls out and his mouth hangs open.