Last week was a week of setbacks and this week hasn't started off on the right foot. I know I said I would update once a week, but I decided to do a mid week update and ask for a little extra support and prayers. At the end of last week, we were trying to reduce the fluid in Brody's chest. They had taken him off his feeds and put him back on IV nutrition fluids. This wasn't the greatest solution for a baby who desperately needs to gain weight, but it would hopefully solve the fluid issue once and for all. Monday was looking pretty good. Brody's fluid output was greatly reduced and we were headed in the right direction. That afternoon I went to pump and while I was gone his nurse went to lunch. When I came back, I saw a dr and 3 or 4 nurses standing around Brody and looking at a computer. I asked if everything was ok and they said his chest tube came out. We don't know exactly how it came out, but it was out. The plan was going to be to get an X-ray and make sure all was good on the inside. Since he hadn't had much output on the chest tube that day they were just going to leave it out and keep monitoring. If they saw issues later with fluid they would put one back in. He did pretty good the rest of the day and the X-ray didn't show any issues.
Tuesday when they rounded on Brody the Dr discussed that his major issue was that Brody was severly malnourished. With trying to fix the fluid issue, his nutrition was struggling even more. They were maxed out on what he could be given through the IVs and Brody needed to be able to retain as many of the calories he was given as possible. The dr mentioned that if he showed signs of struggling to breathe that they were going to put the breathing tube back in. They didn't want him wasting all his calories struggling to breathe. He had spiked a fever of 101 overnight so they were going to be running tests to see if he had an infection. I left to go pump and when I came back the nurse said he threw a huge temper tantrum and though he was calm now, his breathing was really high from his fit and we needed it to come back down. I left later to go grab a quick bite to eat and on my way back up they called and said that the dr decided to put the breathing tube back in.
So, as of right now, Brody is back on the breathing tube and staying heavily sedated. They don't want him wasting any energy moving around fighting the breathing tube or trying to breathe over the ventilator. They want him storing all the calories he can. He is already looking so much better. They gave him blood which has helped his color and he isn't looking so wrinkly. Needless to say these last few days have been filled with high volumes of stress and a heavy weight of emotion. Yesterday it seems all I could do is stand next to his bed and pray and cry. Now that I'm sitting here with him and he's all sedated I wonder if he knows I'm here. Does he recognize that he's squeezing my finger? Does he feel me rubbing his head? Does he have any idea how loved he is?
The Dr's here are amazing and so compassionate. One of the drs we have been dealing with walked by and saw me upset. Brody isn't specifically one of his patients anymore, but he stops and checks on us. He reassured me that it was going to be ok and that Brody would get better. His heart was doing well and everything Brody was going through wasn't anything unexpected. These were the things they can fix and, in Brody's case, it was just going to take time. Another dr that has had Brody as one of her patients the longest has been on the night shift this week. When they rounded yesterday to fill in all the night shift people on the cases you could see it was hard for her to see Brody back on the breathing machine and sedated. She had been championing his progress and you could tell the set backs had effected her too. Seeing and hearing the compassion these doctors have for Brody is comforting. They truly care about him and its amazing to see them have that emotional connection to him as well. It isn't just about the medical stuff with them.
I don't know what this next week will look like, but I pray the set backs are over and we can truely start to move forward again. We have received lots of kind thoughts and support through this process and it truly has made all the difference to Trey and I. There is no way we would make it through any of this without it, so please keep doing what you are doing. Though we may not comment back on posts or Facebook, every message is read and appreciated. I thank God everyday for all the people supporting us and sharing our story with others to rally additional support and prayers. It is crazy the different random connections that have been made. Some of our favorite stories consist of total strangers that ask about Brody or communicate a message to us. We have even heard stories of Brody being on prayer lists at churches where we have no idea who or how it happened. Truly amazing and a feeling I can't even begin to describe.
Wednesday, July 31, 2013
Monday, July 29, 2013
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!
Wednesday, July 24, 2013
Slow and Steady- Week 2
Brody's second week has consisted of a very slow and steady recovery. We started off having issues with getting the extra fluid to drain, but finally we had some success. Because he had so much fluid to lose and an x-ray showed quite a bit of that fluid around his lugs, they put in a chest tube to help drain. This really helped to do the trick. The rest of the week consisted of getting that fluid out so we could move forward with other aspects of recovery. Eventually they started coming off his meds and started decreasing his levels on his breathing tube. By the end of the week, he was quite annoyed with the breathing tube. His sedation and pain meds were off and so he was more aware of how annoyed he was. On top of that, he was still being fed liquids through his lines and so he wasn't feeling completely satisfied food wise. For about 3 days straight he would not sleep; literally would not sleep. He was very fussy and agitated and nothing really worked to get him comfortable because we still couldn't hold him at this point. His fussiness also was a side effect of the withdraws he was having from not being on his narcotics anymore. My little guy was now fighting a drug addiction. It sounds funny, but it is completely normal. They put him on a special medicine that helps to wean him off of the dependency and they take the levels down day by day. You can't just pull these babies off the drugs all together because the side effects could be harmful to him and his recovery. Finally, they had worked with his breathing enough that he was able to come off the breathing tube. I was one happy Momma when they removed that thing. Brody seemed to be a lot more content and finally started sleeping. Brody started being fed on a continuous drip that went straight into the belly. When they started this, they noticed his chest tube was filling with fat. When inserting the chest tube, something got nicked and now his fats were draining out of him (not a good combo for an already tiny baby). It wasn't anything the doctors did wrong, because the thing that got nicked, can't be seen. Now what they have had to do is put him on a special formula that is fat-free, but high in calories. Eventually they will be able to take out the chest tube and all will be well. Each week we see him get better and better and it really has made things easier on us. My goal is to try and update this blog every week, but it can be difficult to get done. By the time we leave the hospital, get home and eat dinner it's time to pump and go to bed to be up early the next morning. So, I end up choosing sleep over getting on the computer. I love to put my updates out there because I know so many people our interested in Brody and have embraced his story. I love hearing stories from friends and family about people we don't even know asking about Brody and how he is doing. Just recently we heard Brody had made the prayer list at a church and we have no idea who goes there that even put him on the list. Truly amazing!
2 Weeks Old - 10 days post surgery
The window washers scared the poo out of me. Not what you are expecting when you look out the window of the 17th floor. Way cool though.
Brody is able to receive mail. You have the option on Texas Childrens' website to send a patient a greeting card. We started asking for these greetings so that we could make them into a book and show it to Brody when he is older, so he knows just how many people were rooting for him. It is amazing how many of these we have gotten from people we don't know. It really has been a nice piece of encouragement for all three of us. If you would like to send Brody a message, click on the link below. All you need is his name (Brody Bish) and room number (CVICU 18).
Tuesday, July 16, 2013
And Then There Were Three!- Week 1
It's been a while since I have been able to update this blog because, as you can imagine, we have been quite busy. We welcomed our precious baby boy, Brody Lawrence Bish, a week ago and his first week has been an eventful one.
Labor Day
Fair warning some of this may be TMI so if you want to skip ahead feel free. I'm not an overly reserved person when it comes to talking about this stuff so I'm going to lay it all out there. As much as I use this blog to inform others of our story, I also use it as my own form of therapy.
Sunday July 7
We checked in at the hospital about 5 pm. Once I was all settled, a Dr came in and put a balloon in my cervix that would hopefully get dialation started. At my previous Dr.'s appointment I was already 2cm. In some women, this process may bring on contractions though that is not the intention. I was one of the lucky ones that started contractions. The contractions really picked up that night and I was in quite a bit of pain. Sleeping was not going to be an option. The nurse gave me a couple of rounds of pain meds, but Brody was not tolerating them well, so we decided to go ahead and get my epidural. This was a major cause of my anxiety. My back is very sensitive to touch. If you touch my back it sends a shiver up my spine that causes me to jump. I was terrified this was going to happen during my epidural and I was going to end up paralyzed. Maybe I was being a bit dramatic, but it was more of a fear of the unknown. So, about 1:30 am they came in and got things started. They made Trey leave the room and had me sit on the side of the bed squeezing a pillow. The first thing they did was give me a shot to numb the area. It really was not that bad, but I was fighting contractions the entire time I'm trying to stay still. My nurse was in front of me holding a monitor on my belly to monitor the heartbeat. She had me squeeze her arm as needed which I did a few times. I started to feel bad though, so I switched to massaging her arm. Episdural process went well. I was feeling good and contractions seemed to calm down a little at that point. The goal was to try and get some sleep, but it was clear that was not going to happen.
Monday, July 8
In the morning, my Dr. came to check on me. He took out the balloon and checked me and I was 3 almost 4 cm. dilated. I was bummed, but he seemed to think it was a good start. We started the Pitocin to bring on the contractions and thus the waiting game had begun. We would be monitoring his heart rate very closely. If there was any sign of distress we were off for a C-section. In the late morning, we started taking bets on what time he would arrive and his size. I noticed an interesting expression on the nurses face when we were guessing afternoon. I asked her what she thought and all she said was "some time tonight." I didn't like that answer so much. I was already tired from not sleeping and was ready to get this show on the road. Also, I was always used to my sister's labor experiences which never lasted very long. So the wait continued. Brody's heart rate maintained and we were very hopeful things were headed in the right direction. Periodically throughout the afternoon they checked me and I was progressing. Slow and steady. I was exhausted and wasn't able to get much rest, not to mention the fact that I was starving. I hadn't had anything, but ice chips since arriving at the hospital. As the evening progressed my contractions started getting more intense. I was actually needing to push the button for the extra kick of my epidural rather than the automatic doses it would give me. Finally, about 9:30pm it was show time and we were ready to push. I got out a couple of pushes and we stopped for a while. I was having a cramp like pain, so we hit the button for my kick of epidural and I laid on my side for about 30 minutes to try and get Brody to drop more, so I wouldn't exhaust myself by pushing for hours and hours. That seemed to do the trick because after about 30 minutes I was feeling a lot of pressure. During this time we were looking ok. Brody had a couple of dips in his heart rate and my blood pressure was falling occasionally. They had me on oxygen and we were back to pushing. For a while they had me lay on my side and push and then there were times they had me push every other contraction to give Brody a break. After I went a couple of rounds of both of us looking good we were back to pushing every contraction. I pushed and pushed for what seemed like forever and I will admit I got a little cranky with people in the room. I didn't yell at anyone I just got a bit snippy. For instance:
Trey: You're doing great Babe! Keep Going!
Amber: Oh, What do you know? You've never done this before!
Amber: It hurts. It hurts really bad.
Mom: I know
Amber: You don't know! You had C-sections!
(At which time Mom totally throws Stacy under the bus and tries to say she said it.)
Stacy: You're doing great! Is there anything I can get you? Wet rag? Ice chips?
Amber: Yes, you can get this head out of my vagina!
I pushed for what seemed like forever. His head seemed to be right there the whole time. By this time most of the epidural was gone and I was feeling quite a bit. If someone said "you're so close, he's right there" one more time I was going to explode. Finally, they brought in the on call Dr. to deliver and at this point I knew I was close. They NICU Dr's also started to arrive to get ready for Brody, but I didn't pay much attention. The only people I was concerned with at that time were the two people at the edge of the bed that were going to get this child out of me. I pushed about 4 or 5 more times and there he was. My baby boy was born at 11:26 p.m. weighing 5lbs 15 oz and measuring 19.8 in. They immediately took him to the baby bed and started cleaning him off and assessing him. I was calm, cool and collected and I remember telling my mom, "I just need to hear him cry." When he came out I know I heard him make whimpering sounds, but I was waiting for the real deal. Not long after that, I heard my baby cry and instantly began sobbing. I was so grateful that he was here and was doing ok. I couldn't see much of what was going on, but I knew he was in good hands. There was a rather large team of Dr's taking care of him. I started drinking some water because my mouth was so incredibly dry. I may have drank it too fast because it wasn't too long after that that I ended up throwing up. After about 20 minutes or so I heard one of the Dr's say, "Now let's get you wrapped up, so Mom can hold you before we leave." This was one of the greatest unexpected gifts every. I was told that there would be a chance they would take him without me getting to hold him, but because he was doing so well, I was going to get 5 minutes with my baby. He opened his eyes and looked at me and it was truly love at first sight. He was perfect!
It was time for him to make his way to NICU. One of the hardest things was watching them take my baby. I wanted nothing more than to see him and love on him, but our time together was so short. I handled it a lot better than I thought I would. It really helped knowing he was in good hands and so many people were dedicated to him. Trey and my sister made the journey with him and they immediately started running labs and scans to assess his heart. They got me cleaned and settled in a room at about 3:00 am and Trey came and joined me about 3:15. There wasn't going to be any where for Trey to stay with him and we were both exhausted. We knew we wanted to try and get some sleep so that we could join him first thing in the morning and try and get some insight about his heart. Again, there wasn't much sleep that was going to happen that night.
Tuesday, July 9
My nurse came and woke me up about 6:30 am to make me go to the bathroom. I was feeling really sore and swollen, so I opted for some pain meds. I didn't go back to sleep because I was anxious to get up so we could head over to the hospital to see Brody, so I was going to get through the day on no sleep. I ordered me some breakfast ate and quickly got ready. Trey wheeled me across to the hospital to the Cardiovascular Intensive Care Unit (CVICU) to get a good look at our baby. He was beautiful. We spent the morning with him and we had a few visitors. In the CVICU, you can only have 2 people by the bed side at a time, one of which being a parent, so that means Trey or I are there taking people to see him one at a time. That afternoon we headed back to my room to again try and get some sleep and head back to see him in the evening. Trey took a nice little nap, but I still was unable to sleep. We went back and saw him that night and things were looking good. They really couldn't tell us much about the heart because they were still running their tests and images and wanted to have the whole picture before talking with us.
Wednesday, July 10 & Thursday, July 11
These days consisted of more imaging. Apparently all the different Dr.'s wanted their own pictures and were seeing things a little bit differently. They were constantly having discussions about what they saw and what they thought would be the best course of action. During the day, we were finally able to hold him. They had told us that because of the line they had going directly into an artery in his umbilical chord that we couldn't hold him because if that got damaged some how that it wouldn't be good. Our nurse carefully allowed each of us to hold him and it was awesome. It has been so hard to just stand and stare at our baby. We want so bad to hold him and love on him especially when he gets fussy.
By this time, you could tell that he was having to work really hard to breath and it broke my heart to see him struggle like that. He was still doing well enough to not need a breathing tube, but it broke my heart to see him like that. He was doing a lot of sleeping mainly because breathing was so exhausting. All along he had been being fed through fluids in his IV. We were working on teaching him about a bottle, so that after he recovered from surgery he would be a little familiar with what to do with it in when the time came, but again it took all his energy to breathe, so he really wanted nothing to do with the bottle. Finally, Thursday evening a surgical plan was developed and we got to meet and speak with the surgeon. It looked like his heart condition was a little better than they had thought it to be when I was pregnant. He has a small aortic arch which would prevent blood from going to the rest of the body. The plan was going to be to repair that by using tissue from the sac around the heart to replace the narrow section. He had a hole in the bottom chamber of his heart which would be patched up. His aortic valve seemed very small and would need to be replaced with a donor valve and his tricuspid valve was very leaky and would need to be assessed further before figuring out what to do. The plan for surgery would be to repair the aortic arch and the hole for sure and then examine and the aortic and tricuspid valve and if they could be repaired easily that would take place as well. I had been released that morning, so we had put our name on the list to stay in the Ronald McDonald House inside the hospital. We were on the waiting list for a room and didn't find out until 10:00 pm that we had a room. We finally got settled into bed about 11:30 pm and tried our best to get some sleep since they wanted us to be at Brody's bedside by 6 am.
Friday, July 12: Surgery Day
We woke up early after a restless night sleep. We were by Brody's bedside at 5:45 am and were waiting for the events of the day to begin. We got to spend some time with him and talked to a few of the Dr.'s. About 8:00am the anesthesiologist came and explained what they were going to do and we signed all the consent paperwork. A little while later it was time to go. We walked with him to the doors of the operating room tears streaming down my face. They allowed me one last moment before they wheeled him through the double doors. They assured me they would take good care of him. Another very difficult moment in my short time span as a parent, watching your 4 day old baby go off for open heart surgery. I was a mess. Trey and I both were. I can't even put it into words. We stopped outside the elevators and hugged each other and stared out the window to try and relax ourselves before joining the rest of our family in the waiting room. We got to the waiting room and again I lost it. I was so scared for my baby. I hated that he was having to go through all this. I felt so helpless. When we checked in at the front desk they gave us a pager, a lot like the ones you get at a restaurant when you are waiting for a table. The pager would go off every hour and a half or so when someone was ready to give us an update. Our first update basically said he was under anesthesia and was stable. At our second update, they told us the incision had been made and the surgeon was taking more images of the heart from the inside and discussing his surgical plan again with other Dr.'s. Our third update said he had repaired the aortic arch and was looking at the aortic valve. The next update said he had opened the aortic valve (not replaced it) and he was closing the hole in the bottom chamber. The next update we were told he was assessing the tricuspid valve. Finally, at about 5:45p.m. we spoke with the surgeon. He confirmed everything he had done and was pleased with the way things had gone. He more so had temporary fixes for the aortic and tricuspid valves and wants to wait on surgically repairing those until he is bigger. The hope is that he will tolerate those fixes until he is about two or so (the longer the better). We still had about another hour and a half before we would be able to see him. Finally, we made our way up to see him and though they tried to prepare us for how he would look, nothing can really prepare you to see your baby like that. Brody was laying flat on his back with his mouth wide open. He had a breathing tube in his mouth and a million different wires all over. I couldn't do anything but cry. He was sedated and would be staying like that for days until he was better recovered. We only stayed about 10 minutes or so before we left. The nurse was really busy getting him settled in and set up and my heart was breaking the longer I stood there. We had a room at the Ronald McDonald House again and we were going to try and get some more sleep. When we got back to the room I sat on the edge of the bed and just cried. I hated seeing my baby like that. I hated how helpless I felt and how badly I just wanted to hold and comfort him.
These last few days on our road to recovery have been slow. Overall he seems to be doing well. He really isn't experiencing anything that wouldn't be expected. His heart seems to be functioning well and our problem has been fluid retention. After a major surgery like that the kidneys kind of shut down and take a break. They placed a catheter inside his belly to drain the fluid. He is being pumped with fluids to keep him hydrated and medicated, but the catheter isn't draining any of it. They replaced the catheter once with no change. They talked with the surgeon on Sunday and he wanted to come in and change it himself, so he did. The catheter seems to be in the right place now, but we are still having difficulty getting the fluid to drain. The biggest side effect with the fluid retention is that he is really puffy and swollen. His x-rays shows he has quite a bit of fluid around his lugs, but the good thing is he seems to be tolerating it well and they haven't had to adjust his breathing system. It has been a very slow process, but the Dr.s say he is headed in the right direction. Today, his kidneys have started coming around and he is producing urine. This is helping get rid of some of the fluid, but he still has a ways to go.
These last few days have been filled with so many different emotions. We have started coming home to sleep and getting up early to go to the hospital for the day. It is so hard to leave him at the hospital and come home. Every day I am filled with so much guilt. I know he has the best baby sitters there are and he is in good hands, but you can't begin to imagine how it feels to leave your sick baby half way across town. We have a number that we are able to call and talk to his nurse about how he is doing whenever we want. We call before going to bed and then we even set an alarm to call in the middle of the night to talk to his night nurse before the shift ends so we can hear directly how the night was going. Once he recovers from surgery, we will be able to move out of CVICU and into an actual room on the Heart Center floor. Here we will have a pull out bed and one of us will stay with him 24 hours a day. Once he has recovered from surgery the rest of his time in the hospital will be spent learning how to eat and such. They told us this can be one of the most long and stressful parts of the recovery process.
My emotions have been on over drive lately. I already mentioned the guilt I feel when I am not right by his side. When I am by his bed side I just feel completely helpless. There is nothing that I can do to make him feel better or anything. I have tried to throw all my energy into breast pumping because I feel like that is the one thing I can actually do for him. I am having a really hard time seeing him in the condition that he is in. I hate seeing him all puffy and with so many wires. I was telling Trey today my fear that he doesn't know who we are and that he won't feel connected to us. I don't feel like I have had a real chance to bond with him and it breaks my heart. I also told Trey that I don't feel like a mom. I am trying hard to stay strong for Brody, but the emotions, stress and sleepiness is a lot to handle. One thing that has helped us stay strong is all the love, support and prayers we have gotten from family, friends and strangers. We have received so many encouraging messages and they really have helped us through all this. Please continue to keep my new little family in your prayers. We are praying for strength and healing for our Brody.
In the morning, my Dr. came to check on me. He took out the balloon and checked me and I was 3 almost 4 cm. dilated. I was bummed, but he seemed to think it was a good start. We started the Pitocin to bring on the contractions and thus the waiting game had begun. We would be monitoring his heart rate very closely. If there was any sign of distress we were off for a C-section. In the late morning, we started taking bets on what time he would arrive and his size. I noticed an interesting expression on the nurses face when we were guessing afternoon. I asked her what she thought and all she said was "some time tonight." I didn't like that answer so much. I was already tired from not sleeping and was ready to get this show on the road. Also, I was always used to my sister's labor experiences which never lasted very long. So the wait continued. Brody's heart rate maintained and we were very hopeful things were headed in the right direction. Periodically throughout the afternoon they checked me and I was progressing. Slow and steady. I was exhausted and wasn't able to get much rest, not to mention the fact that I was starving. I hadn't had anything, but ice chips since arriving at the hospital. As the evening progressed my contractions started getting more intense. I was actually needing to push the button for the extra kick of my epidural rather than the automatic doses it would give me. Finally, about 9:30pm it was show time and we were ready to push. I got out a couple of pushes and we stopped for a while. I was having a cramp like pain, so we hit the button for my kick of epidural and I laid on my side for about 30 minutes to try and get Brody to drop more, so I wouldn't exhaust myself by pushing for hours and hours. That seemed to do the trick because after about 30 minutes I was feeling a lot of pressure. During this time we were looking ok. Brody had a couple of dips in his heart rate and my blood pressure was falling occasionally. They had me on oxygen and we were back to pushing. For a while they had me lay on my side and push and then there were times they had me push every other contraction to give Brody a break. After I went a couple of rounds of both of us looking good we were back to pushing every contraction. I pushed and pushed for what seemed like forever and I will admit I got a little cranky with people in the room. I didn't yell at anyone I just got a bit snippy. For instance:
Trey: You're doing great Babe! Keep Going!
Amber: Oh, What do you know? You've never done this before!
Amber: It hurts. It hurts really bad.
Mom: I know
Amber: You don't know! You had C-sections!
(At which time Mom totally throws Stacy under the bus and tries to say she said it.)
Stacy: You're doing great! Is there anything I can get you? Wet rag? Ice chips?
Amber: Yes, you can get this head out of my vagina!
I pushed for what seemed like forever. His head seemed to be right there the whole time. By this time most of the epidural was gone and I was feeling quite a bit. If someone said "you're so close, he's right there" one more time I was going to explode. Finally, they brought in the on call Dr. to deliver and at this point I knew I was close. They NICU Dr's also started to arrive to get ready for Brody, but I didn't pay much attention. The only people I was concerned with at that time were the two people at the edge of the bed that were going to get this child out of me. I pushed about 4 or 5 more times and there he was. My baby boy was born at 11:26 p.m. weighing 5lbs 15 oz and measuring 19.8 in. They immediately took him to the baby bed and started cleaning him off and assessing him. I was calm, cool and collected and I remember telling my mom, "I just need to hear him cry." When he came out I know I heard him make whimpering sounds, but I was waiting for the real deal. Not long after that, I heard my baby cry and instantly began sobbing. I was so grateful that he was here and was doing ok. I couldn't see much of what was going on, but I knew he was in good hands. There was a rather large team of Dr's taking care of him. I started drinking some water because my mouth was so incredibly dry. I may have drank it too fast because it wasn't too long after that that I ended up throwing up. After about 20 minutes or so I heard one of the Dr's say, "Now let's get you wrapped up, so Mom can hold you before we leave." This was one of the greatest unexpected gifts every. I was told that there would be a chance they would take him without me getting to hold him, but because he was doing so well, I was going to get 5 minutes with my baby. He opened his eyes and looked at me and it was truly love at first sight. He was perfect!
Tuesday, July 9
My nurse came and woke me up about 6:30 am to make me go to the bathroom. I was feeling really sore and swollen, so I opted for some pain meds. I didn't go back to sleep because I was anxious to get up so we could head over to the hospital to see Brody, so I was going to get through the day on no sleep. I ordered me some breakfast ate and quickly got ready. Trey wheeled me across to the hospital to the Cardiovascular Intensive Care Unit (CVICU) to get a good look at our baby. He was beautiful. We spent the morning with him and we had a few visitors. In the CVICU, you can only have 2 people by the bed side at a time, one of which being a parent, so that means Trey or I are there taking people to see him one at a time. That afternoon we headed back to my room to again try and get some sleep and head back to see him in the evening. Trey took a nice little nap, but I still was unable to sleep. We went back and saw him that night and things were looking good. They really couldn't tell us much about the heart because they were still running their tests and images and wanted to have the whole picture before talking with us.
Wednesday, July 10 & Thursday, July 11
These days consisted of more imaging. Apparently all the different Dr.'s wanted their own pictures and were seeing things a little bit differently. They were constantly having discussions about what they saw and what they thought would be the best course of action. During the day, we were finally able to hold him. They had told us that because of the line they had going directly into an artery in his umbilical chord that we couldn't hold him because if that got damaged some how that it wouldn't be good. Our nurse carefully allowed each of us to hold him and it was awesome. It has been so hard to just stand and stare at our baby. We want so bad to hold him and love on him especially when he gets fussy.
By this time, you could tell that he was having to work really hard to breath and it broke my heart to see him struggle like that. He was still doing well enough to not need a breathing tube, but it broke my heart to see him like that. He was doing a lot of sleeping mainly because breathing was so exhausting. All along he had been being fed through fluids in his IV. We were working on teaching him about a bottle, so that after he recovered from surgery he would be a little familiar with what to do with it in when the time came, but again it took all his energy to breathe, so he really wanted nothing to do with the bottle. Finally, Thursday evening a surgical plan was developed and we got to meet and speak with the surgeon. It looked like his heart condition was a little better than they had thought it to be when I was pregnant. He has a small aortic arch which would prevent blood from going to the rest of the body. The plan was going to be to repair that by using tissue from the sac around the heart to replace the narrow section. He had a hole in the bottom chamber of his heart which would be patched up. His aortic valve seemed very small and would need to be replaced with a donor valve and his tricuspid valve was very leaky and would need to be assessed further before figuring out what to do. The plan for surgery would be to repair the aortic arch and the hole for sure and then examine and the aortic and tricuspid valve and if they could be repaired easily that would take place as well. I had been released that morning, so we had put our name on the list to stay in the Ronald McDonald House inside the hospital. We were on the waiting list for a room and didn't find out until 10:00 pm that we had a room. We finally got settled into bed about 11:30 pm and tried our best to get some sleep since they wanted us to be at Brody's bedside by 6 am.
Friday, July 12: Surgery Day
We woke up early after a restless night sleep. We were by Brody's bedside at 5:45 am and were waiting for the events of the day to begin. We got to spend some time with him and talked to a few of the Dr.'s. About 8:00am the anesthesiologist came and explained what they were going to do and we signed all the consent paperwork. A little while later it was time to go. We walked with him to the doors of the operating room tears streaming down my face. They allowed me one last moment before they wheeled him through the double doors. They assured me they would take good care of him. Another very difficult moment in my short time span as a parent, watching your 4 day old baby go off for open heart surgery. I was a mess. Trey and I both were. I can't even put it into words. We stopped outside the elevators and hugged each other and stared out the window to try and relax ourselves before joining the rest of our family in the waiting room. We got to the waiting room and again I lost it. I was so scared for my baby. I hated that he was having to go through all this. I felt so helpless. When we checked in at the front desk they gave us a pager, a lot like the ones you get at a restaurant when you are waiting for a table. The pager would go off every hour and a half or so when someone was ready to give us an update. Our first update basically said he was under anesthesia and was stable. At our second update, they told us the incision had been made and the surgeon was taking more images of the heart from the inside and discussing his surgical plan again with other Dr.'s. Our third update said he had repaired the aortic arch and was looking at the aortic valve. The next update said he had opened the aortic valve (not replaced it) and he was closing the hole in the bottom chamber. The next update we were told he was assessing the tricuspid valve. Finally, at about 5:45p.m. we spoke with the surgeon. He confirmed everything he had done and was pleased with the way things had gone. He more so had temporary fixes for the aortic and tricuspid valves and wants to wait on surgically repairing those until he is bigger. The hope is that he will tolerate those fixes until he is about two or so (the longer the better). We still had about another hour and a half before we would be able to see him. Finally, we made our way up to see him and though they tried to prepare us for how he would look, nothing can really prepare you to see your baby like that. Brody was laying flat on his back with his mouth wide open. He had a breathing tube in his mouth and a million different wires all over. I couldn't do anything but cry. He was sedated and would be staying like that for days until he was better recovered. We only stayed about 10 minutes or so before we left. The nurse was really busy getting him settled in and set up and my heart was breaking the longer I stood there. We had a room at the Ronald McDonald House again and we were going to try and get some more sleep. When we got back to the room I sat on the edge of the bed and just cried. I hated seeing my baby like that. I hated how helpless I felt and how badly I just wanted to hold and comfort him.
These last few days on our road to recovery have been slow. Overall he seems to be doing well. He really isn't experiencing anything that wouldn't be expected. His heart seems to be functioning well and our problem has been fluid retention. After a major surgery like that the kidneys kind of shut down and take a break. They placed a catheter inside his belly to drain the fluid. He is being pumped with fluids to keep him hydrated and medicated, but the catheter isn't draining any of it. They replaced the catheter once with no change. They talked with the surgeon on Sunday and he wanted to come in and change it himself, so he did. The catheter seems to be in the right place now, but we are still having difficulty getting the fluid to drain. The biggest side effect with the fluid retention is that he is really puffy and swollen. His x-rays shows he has quite a bit of fluid around his lugs, but the good thing is he seems to be tolerating it well and they haven't had to adjust his breathing system. It has been a very slow process, but the Dr.s say he is headed in the right direction. Today, his kidneys have started coming around and he is producing urine. This is helping get rid of some of the fluid, but he still has a ways to go.
These last few days have been filled with so many different emotions. We have started coming home to sleep and getting up early to go to the hospital for the day. It is so hard to leave him at the hospital and come home. Every day I am filled with so much guilt. I know he has the best baby sitters there are and he is in good hands, but you can't begin to imagine how it feels to leave your sick baby half way across town. We have a number that we are able to call and talk to his nurse about how he is doing whenever we want. We call before going to bed and then we even set an alarm to call in the middle of the night to talk to his night nurse before the shift ends so we can hear directly how the night was going. Once he recovers from surgery, we will be able to move out of CVICU and into an actual room on the Heart Center floor. Here we will have a pull out bed and one of us will stay with him 24 hours a day. Once he has recovered from surgery the rest of his time in the hospital will be spent learning how to eat and such. They told us this can be one of the most long and stressful parts of the recovery process.
My emotions have been on over drive lately. I already mentioned the guilt I feel when I am not right by his side. When I am by his bed side I just feel completely helpless. There is nothing that I can do to make him feel better or anything. I have tried to throw all my energy into breast pumping because I feel like that is the one thing I can actually do for him. I am having a really hard time seeing him in the condition that he is in. I hate seeing him all puffy and with so many wires. I was telling Trey today my fear that he doesn't know who we are and that he won't feel connected to us. I don't feel like I have had a real chance to bond with him and it breaks my heart. I also told Trey that I don't feel like a mom. I am trying hard to stay strong for Brody, but the emotions, stress and sleepiness is a lot to handle. One thing that has helped us stay strong is all the love, support and prayers we have gotten from family, friends and strangers. We have received so many encouraging messages and they really have helped us through all this. Please continue to keep my new little family in your prayers. We are praying for strength and healing for our Brody.
Sunday, July 7, 2013
Dear Brody
Dear Brody,
Tomorrow is the big day; we finally get to meet you! We have been praying for this day ever since the day we got married and I can't wait to hold you in my arms and press my cheek to yours. I remember when I first found out I was pregnant with you, your whole life played out in my mind. I imagined giving birth to you, bringing you home, your first step, your first day of school, your graduation, your wedding and even you becoming a parent yourself. I was instantly filled with so much excitement for everything you would bring to our lives. You haven't even entered this world yet, but yet you have brought us so much joy. I know your Daddy is anxiously waiting to share anything and everything sports related with you. I will tell you this though, it is completely up to you whether you call yourself a Packers fan or Texans fan. He has so much to teach you and I pray that you turn out to be just like him because he is amazing.
As a new family, we have quite the journey ahead of us, but together we will get through it. We are a strong family of fighters that never quit and I know you will fit right in. When you get here, we need you to fight like hell (yes, Mommy said hell). I know the strength that you have because I have felt you kicking and moving around in my tummy for quite some time now and I pray that you recognize your strength early on. You are a precious gift from God and I can't wait to teach you about all His glory and everything He has shown us through you. There are so many people out there that have been talking to God about you and praying for you. From family and friends to complete strangers, you have enlightened so many people and shown them how wonderful our God is. You are a special baby boy and I will spend every breath I have making sure you always know that and thank God every day for the sweet blessing that you are.
I love you baby boy and can't wait to start our life together.
Love,
Mommy
Tomorrow is the big day; we finally get to meet you! We have been praying for this day ever since the day we got married and I can't wait to hold you in my arms and press my cheek to yours. I remember when I first found out I was pregnant with you, your whole life played out in my mind. I imagined giving birth to you, bringing you home, your first step, your first day of school, your graduation, your wedding and even you becoming a parent yourself. I was instantly filled with so much excitement for everything you would bring to our lives. You haven't even entered this world yet, but yet you have brought us so much joy. I know your Daddy is anxiously waiting to share anything and everything sports related with you. I will tell you this though, it is completely up to you whether you call yourself a Packers fan or Texans fan. He has so much to teach you and I pray that you turn out to be just like him because he is amazing.
As a new family, we have quite the journey ahead of us, but together we will get through it. We are a strong family of fighters that never quit and I know you will fit right in. When you get here, we need you to fight like hell (yes, Mommy said hell). I know the strength that you have because I have felt you kicking and moving around in my tummy for quite some time now and I pray that you recognize your strength early on. You are a precious gift from God and I can't wait to teach you about all His glory and everything He has shown us through you. There are so many people out there that have been talking to God about you and praying for you. From family and friends to complete strangers, you have enlightened so many people and shown them how wonderful our God is. You are a special baby boy and I will spend every breath I have making sure you always know that and thank God every day for the sweet blessing that you are.
I love you baby boy and can't wait to start our life together.
Love,
Mommy
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