It is Time

The time has come to dust off the OG Bish Family Blog (and my-oh-my how the Bish Family has changed). I originally started the blog at the very beginning of our parenting journey when I was pregnant with Brody. Occasionally a memory will pop up on Facebook from those early days and I will stop and go read the blog and remind myself of our story and just how far we have come and how much we have learned. Over the years, as I have met people who have struggled with infertility, had a high risk pregnancy, had a child with complex medical issues, etc., I have shared my blog with them, so they could hear the story of someone who has been there, done that. I would always send it with a cautionary statement that this was our unique journey and that it didn't mean their story would be the same. That first year (well almost 2 years if you count the pregnancy) was a whirlwind of crazy that when I go back and read, I am shocked and proud of all that we have conquered. Since the last post, in September of 2014, we blessed ourselves with two more kids, Colby (who will be 9 next week) and Zoey (who will be 6 in about a month). Throw in the dog, Chewie, that I said I would never own that has completely attached himself to me and made me his mom, it is safe to say our house is never quiet or clean. Also since that last post, we have learned so many things about Brody. Sometime after that last post, at the suggestion of his immunology doctor, we completed a very in-depth genetic testing to try and determine why his immune system seemed to be struggling to catch up. Was it the trauma his body went through during that first year  with the two heart surgeries that caused his immune system to be delayed, or could it be the result of a genetic disorder? With those results, we found out Brody had an extremely rare genetic disorder called Mowat-Wilson. His genetic disorder explained everything that we had been dealing with, with the exception of the immune system. At the time he was diagnosed, he was one of a handful of people in the United States that had been diagnosed with Mowat-Wilson. Over the last decade, we have seen the statistics go up as more genetic testing, research and literature have become available. Brody seems to be on the more severe side of the Mowat-Wilson spectrum. Believe it or not, medically, he is not as complex as some of the other MWS kiddos, but developmentally he is definitely on the more severe side. For those that do not know Brody, he is about to be 11, but developmentally is probably 9-12 months. He relies on assistance for all daily tasks (mobility, diapering, feeding, etc.) He is completely non-verbal, but we recently acquired an eye-gaze device and have been working on getting him to use it to assist with communication. We know Brody will require full time care for his entire life, but are hopeful some things will be learned with time. 

With all that being said, the main reason we are bringing back the blog is Brody will be having his 3rd heart surgery next Friday, July 5th! Over the last year or so, we knew we were inching closer to his next surgical intervention. Brody's cardiologist has followed him since the womb and we have a very good relationship with her. She knows I work in education and all I have ever wished for is if we could please do the surgery during the summer. We planned to have a Cardiology appointment in March, so she could have all the most up-to-date data and imaging to be able to move forward with presenting his case to the surgical team that would then hopefully give us first dibs on summer scheduling. Everything was going according to plan, but we did not take into account that Brody's surgeon, also the one that did his first two surgeries over a decade ago, would maybe want to take a summer vacation in early June. So here we are with our surgery date of July 5th!

On Tuesday, we met with the surgeon and discussed his plan. There will be 3 different things they will address in this surgery.

1. Conduit Valve: During his second surgery they replaced his Aortic Valve with a donor valve. Since it is a donor valve, it doesn't grow with him and he has outgrown the valve. We know that valve came from a 5 year old, so when it was placed when he was 6 months old, we knew it should last us a while. Couple that with the fact that Brody isn't a fast grower, it has served us well. 

2. Tricuspid Valve: This valve has been leaky and irregular since the womb. During the first two surgeries, there were other more critical concerns that needed to be addressed and the Tricuspid Valve was moderately leaky. Over time, we have monitored this valve and it is now on the severe side. Between the leakiness of the Tricuspid Valve and the leakiness of the donor valve, Brody's heart has been working pretty hard. He has been on blood pressure medication for a while to slow down how hard the heart works and since Brody isn't super active, this has kept him manageable. 

3. Aortic Patch: This repair suggestion was new to us. During the first surgery, they placed a patch on his Aorta to open it up because it was very narrow. Well the patch doesn't grow with him and so this will be addressed as well. The surgeon will decide if he will replace it with a new patch, tubing or something else. 

What we do know about this surgery is that it will be a long day, which is to be expected. It will likely take hours just to get to the heart because they have to be very careful navigating through all the scar tissue and the chest cavity. The surgeon has a plan for what he wants to address, but some of the "how" will take place in surgery once they place him on Bypass and get a good look at the heart. The surgeon mentioned he anticipates being able to close the chest in the OR and that he will come out on the breathing tube, which is to be expected. He mentioned he wants to get aggressive with getting him off the breathing tube and getting him sitting up in bed to help aid his recovery. Since our last surgery, TCH has expanded their Cardiology Unit and program. All of the CVICU rooms are private and come with a pull out bed for parents. This is drastically different from last time. During his first two surgeries, we were not able to stay the night with him while he was in CVICU and we had to get their super early just to try and get a comfortable chair for the day. Knowing that we can stay with him at all times and have our own private space, is super comforting and will do a lot for us physically and mentally. 

What we do not know about surgery... is everything else, haha. We don't have an idea on what or how long recovery will be. What I learned from last time is we are on "Brody Time," and he will run the show. There are hiccups that can happen and things that can and will pop up that will need to be addressed. Though our recovery last time was less than pleasant, I feel like we know so much more about Brody now that will aid in the process. Last time, Brody was a baby and his body was tiny and still developing. There was a lot of time and emphasis spent on getting him back on track developmentally. We worked tirelessly at trying to get him to eat by mouth and I felt like this kept us inpatient for much longer than we may have needed to be. We know so much more about Brody's norm and Brody's capabilities and the team will have a much clearer picture of what to plan for his recovery.

So here we are. This next journey will start in about a week and we are starting to do all the prepping to move forward. I have gone into full on nesting mode wanting to get everything done around the house that I have been wanting to do for months now. When we did this the last time, I remember saying " I am glad he is our first and we aren't trying to do this with other kids at home." Colby and Zoey are in good spirits and we have been trying to answer all of their questions the best we can. Being older, and more emotional, Colby is struggling a bit more. Every time we have talked about July, Colby is quick to mention "but that means surgery." He has always asked questions about Brody and wants to help care for him as much as an 8 year old can. He has known Brody would have another heart surgery and we promised him that we would be as honest as we can with him. The biggest mistake I ever made, well maybe not ever, but a couple of years ago Brody was admitted to the hospital for a few days and we told the kids he was at the doctor as not to scare them with the word hospital. Well after that, any time we said Brody was going to the doctor the kids would be worried that he wasn't going to come home and we would be staying at the doctors. I quickly decided that honesty was better and less scary overall. Zoey is aware of what's going on, but I think prefers to not talk about it. We were talking about it yesterday a little and she said "how did we even start talking about this?" I think she prefers to not think about it. The biggest struggle for her is going to be when one, or both of us, aren't at home. Lucky for them, we have an amazing tribe of family, friends and supporters that we know will be there for all of us during this time. 

The only thing we are asking for at this time is for prayers and good vibes. Our current prayer requests:

1. Brody: Strength, Healing

2. Surgeons/Doctors: Wisdom, Skills

3. Colby and Zoey: Comfort

4. The Tribe: Thanks

5. Trey and Amber: the Power to manage it all :)

 

Busy, Busy, Busy

It has been a while since I have updated about Brody. I guess that is mostly a good thing because it means he is doing so well. These last two months have been crazy busy for all of us. At the end of July, Brody had to have a minor surgical procedure done. One of his "marbles" did not drop so we had to go in and get it put in its place. (No, it doesn't seem Brody can catch a break ;) )We arrived at TCH early that morning and got him all checked in. We met with the anesthesiologist right before they took him back and she was very familiar with Brody. His cardiology team wanted him to have a cardiovascular anesthesiologist and the doctor we got was the anesthesiologist for his first open heart surgery at 4 days old. I remember her very vividly. I remembered as they started to push his bed down the hall she paused right outside the OR doors so that I could give him one last squeeze. I had already started crying and I know I had fear painted all over my face. She assured me she would take good care of him as if he was her own. I guess you don't forget the face of the person who takes your baby back for open heart surgery. Anyways, she reviewed his file and remembered him and the tough recovery road he had. She decided that she wanted Brody to spend one night in the hospital after the procedure just as a precaution since Brody has never been an "in and out" kinda kid. I laughed because that was so true and I already had a bag packed and waiting in the car as a realistic "just in case." The surgery only took about an hour and a half and everything went well. When we got to go see him in the recovery area afterwards he was not happy. I can't say that I blame him though. He was very cranky and irritable. Trey was finally able to hold him and get him to calm down some. He was gagging quite a bit which told me he was intubated during the surgery. We spent the entire afternoon in recovery waiting for a room on the old stomping grounds of the 15th floor. The recovery area we were in closed around 5 so they moved us to the hospital recovery area while we waited. Finally, that evening they had a room and we were ready to go. The nurse called the receiving nurse on the 15th floor to give report. When she heard his name, the nurse said, " Oh I know Brody! You don't have to go through his whole history." The nurse came back and told us that and I just laughed and told her, "Ya we spent quite a bit of time up there. Everyone knows Brody." When we got to the 15th floor, Brody was really, really mad. We got them to order him some pain meds, but it seemed to take them forever to get there and he was just screaming and couldn't get comfortable. Once he got his meds, he passed out and slept the rest of the night. I on the other hand, did not get much sleep. I was back to sleeping on the uncomfortable couch and dealing with nurses in and out and lights and sounds in the room and hall. I think I maybe slept a handful of hours. The next morning, the urology team came by at like 5 am threw the lights on and wanted to check on the incision. They need to work on their approach a little. The cardiology doctor came by later that morning and gave us the green light for discharge and we just had to wait on the paperwork to go through. While we waited, I took Brody for a little walk around the floor to see if any of the nurses we had the last time were there and we saw several of our old "friends." Everyone was surprised he was there, but were relieved when I told them we weren't there for anything heart related and we were already leaving. It's very bitter sweet to run into all these nurses and doctors that remember Brody. It's bitter because I wish the circumstances for how they knew him were different and it's sweet because I love that they remember him and care about him. Well the paperwork literally took all day and we were released just in time for the afternoon traffic. I didn't care though. I was just happy we were going home.

Brody recovered nicely. After that week, we resumed all of his therapies and life was back to our normal. In August, I officially went back to work. For the first week, I had my family take turns taking days off work to watch him. His baby sitter still had all of her summer kids all day and I didn't think it would be fair to her or Brody to start that week with adjusting to each other and his feeding tube. The following week Brody started going to the sitter's house and it went extremely well. Brody adjusted great. It was like he had been doing this all along. It is such a peace of mind to see how well he is doing with her and how much he is already loved.

This month is crazy with appointments and visits for Brody. A lot of these appointments I had to book before I ever knew I was going back to work, but once this month is over, his appointments will be able to fall on school holidays for the most part. I feel like Brody is being followed by almost every department within the hospital. We had an ultrasound done in July to check his spleen. They are still trying to figure out what could be the cause of his immune system issues and thought it could be caused by the spleen. Well it looked good and there were no issues there, but the abdominal ultrasound found calcifications (stones) in his left kidney and liver. The dr I spoke too didn't seem overly concerned, but said urology would continue to follow him for the kidney and GI would follow him for the liver. I already had a surgery follow up scheduled for September with Urology, so we will see what they have to say about it then. I am working on scheduling the GI appointment and will hopefully be able to do that over the Thanksgiving break.

I'm sure I have missed some other things that have happened these last two months, but overall Brody is doing great. I feel that he is growing stronger and advancing every day. We are all adjusting well so far to the changes that have come along with me returning to work. I am looking forward to appointments hopefully calming down over the next month, but until then, I will continue the marathon called life.


Brody's 1 year photos, courtesy of Eye Candy by Candace

Quick, act like you're sleeping

O-H-I-O

Go Texans!

He's thinking about it...

Dressed like Paw Paw

 

                                                           Big boy car seat

Football with Dad

Happy Birthday Brody!

The day we have waited for and prayed over for so long finally came. It seemed like such an accomplishment and victory to watch Brody celebrate his first birthday surrounded by so many family and friends, and boy did we celebrate. We started off with Brody's birthday party. We had a sports themed party and invited almost everyone we knew. We have had so many people walking this journey with us and I felt like this was a day for all of us to celebrate. The saying "it takes a village to raise a child," was so true for us, so I had to invite our village. Brody was passed around from person to person while I just got to sit back, relax and take it all in.

 

 We are good with the singing, just don't clap!

 I have waited all year to take this picture...

 

 and you can see it took some practice! :)

On Tuesday, we celebrated his actual birthday. We had a small dinner at my parents' house and ate more cake!

And we sing again, no clapping!

 

 

That Saturday we celebrated another anniversary, heart surgery. A lot of heart babies have a celebration for their heart day and I truly felt this was something worth celebrating. This was a day where I really got to take a step back and see exactly how far we have come. We had a really rough journey in the beginning, but I know that I would not be the mom, or wife, I am today had I not gone through that experience.

 

As a heart mom, I have learned the power and importance of family and friends. There is no way we would have made it through this last year without the support system we have had. From car rides, to meals, to hotel rooms, to visits, to listening, to crying, to praying, I relied so heavily on everyone. Sometimes it was me needing to be strong for others and convincing others that everything was okay that made a difference.

 

As a heart mom, I have learned the power of prayer. I would say really as a mom in general. We struggled so long just to get pregnant and I could never figure out why God was giving me that struggle. Looking back, I think He was preparing me for motherhood. Had I not of gone through that struggle, I may not have been strong enough for the experiences this last year has brought.

 

As I heart mom, I have learned about the impact of strangers. So many people that I have never met have connected to our story and followed Brody from the very beginning. I love when I hear about people I don't even know asking how Brody is doing. My absolute favorite is when I get introduced to someone new as, "this is Brody's mom." Brody has no idea the amount of people who have thought and prayed about him. Through the power of social media, I have been able to connect with other heart moms. This has been a true blessing. It is an entirely different form of support from people who are living a very similar story. I know that I have benefited greatly from the support of these other moms and I only hope that I can use my story to help guide and comfort other heart moms.

 

As a heart mom, I have learned that everything is worth celebrating. Brody can do the slightest of things and I am jumping up and down getting excited. I know this is probably true of most moms, but I feel like a heart mom has a little extra to celebrate. I would also like to add that Brody accomplished his goal I set for him and he is now sitting up on his own!

 

 

 

 







  Some people never meet their superhero;

I gave birth to mine

 Love the face

 

 

We have so much to look forward to with this little guy. Oh,  I can't wait to see the places he will go!

 

 

 



 

 

 

 

 

 





 







11 Months

Well other than a million and one different appointments, Brody is doing great. We stay very busy with his 4 different therapies. He still does not like going to therapy and typically will cry the whole time. I am in the process of switching his therapy over to "in home" therapy where a therapist will come work with him at home. I tried initially setting his therapy up this way, but had no success. My second attempt has worked out better and it's just a long process getting everything switched over and scheduled. My hope is that by switiching over to "in home" Brody might be a little more comfortable in a familiar setting and we might get a little more accomplished. Also, these therapist will be able to go to a baby sitters house, so I am also in the process of looking at going back to work. It's so bitter sweet to think about going back to work, but when you look at the big picture, I think it will be best for all of us. We are trying to get him more comfortable with being in different settings with different people to help with the adjustment of going to a baby sitter. I have noticed that he is getting better and better ad being able to adjust to different circumstances. 

We had our cardio appointment this last week and overall things looked good. The cardiologist noticed some changes on his echo and said these were things we just needed to watch and keep in mind for the future. His tricuspid valve that has always been leaky and has not been fixed yet is now measuring "severely" leaky. His new aortic valve that was placed during his last surgery is dilated. This is pretty common and not unexpected and the cardiologist hopes to manage both of these issues with his medicine. We will continue to monitor him for signs that he is not tolerating his heart situations and hpoefully we can still go a very long time before needing to surgically repair anything.  As she was telling me all this, my heart was sinking. I am not even a little bit ready to think about another surgery. My very conservative cardiologist did not seem overly worried by these changes and felt good enough to let us go 3 months until our next appointment. When she said that, I think I took a big breathe of relief. 

We have a couple of appointments coming up that will hopefully give us good news. Brody will have blood work done to check his immune system and see if his T-Cell count has improved. Hopefully everything will come back showing imrpovements and we can maybe come off some of our meds. He will then meet with infectious disease that monitors his CMV virus. If his blood work shows his immune system has improved he will get to come off his CMV medicince. This would also mean one less monthly appointment and blood work. This medicine can have some negative side effects on blood count and the liver, so he is needing to be monitored for any symptoms. At some point, if I can ever get everything figured out and coordinated, Brody will meet with a nutritionist to evaluate his feeds. He has fought hard to work his way into the 26th percentile and he has been on the same feeding regimen for a very long time, so we want to go over things and see if and what kind of adjustments we might need to make. 

This last weekend we celebrated Trey's first Father's Day. It was a nice day of just relaxing and spending time together. So often we are on the run and constantly going, going, going and it was nice for the three of us to get to sit around and be lazy. Trey does so much for Brody and I so we treated him with a gift of golfing fun. 

By the time we are ready for another post Brody will be one! I am so excited for his birthday and party. There is so much to celebrate! 

                                 11 months

         When we are tired of practicing sitting up

    Mission Accomplished. I put him in his jumper so 

    he would tire himself out and take an early nap 

    to be in a better mood for therapy. 

   Looking good in Michigan colors (hubby is a huge 

   Ohio State fan and wasn't amused with my 

   comment ;) 

    Cardiologist was running behind, so we got to eat, rest and watch 

    some Mickey Mouse Clubhouse

 

    Happy Father's Day!

10 Months

I guess the old saying, "No news, is good news,"  holds true. The big picture is that everything is going really well. We had our cardio appointment in April and we don't have to go back for 2 months. That is the longest we have ever been able to go. We started occupational therapy a couple of weeks ago and we are still getting adjusted. The first two visits Brody screamed the entire time and we didn't get anything accomplished. Our last visit was more of a success. He was in a decent mood going into the appointment and made it about half way through before getting upset. Even though he was upset, he was still cooperating and we were able to work through the crying fit. We had our first speech therapy this morning to work on his feeding issues. She was pretty pleased with his starting point and where we are right now which is encouraging. This week we will also start his physical therapy. In case you are lost, we have speech therapy on Mondays, physical therapy on Tuesday and occupational therapy on Wednesday and are awaiting the schedule for a developmental therapy. Talk about running out of time. Our other doctor appointments get squeezed in on Thursdays and Fridays right now, but because Brody is rocking it, we don't have too many of those.

A couple of weeks ago Brody had his first cold. We have been through a lot with surgeries and hospitalizations that you would think a little cold would be nothing for me to handle. The truth is it broke my heart. He handled it pretty well, but I had a hard time listening to him cough and breathe throughout the night. I was very happy when he was feeling better and was back to sleeping through the night.

I feel like everyday Brody is growing more and more. This month he accomplished rolling over and it came out of nowhere. We were doing our tummy time and all of a sudden he started rolling. Now it is difficult to keep him on his tummy for tummy time because as soon as you set him down, he flips. Our next goal is to be sitting up. We practice and try a lot, but we still have a ways to go. We still need to work on our upper body strength.

This last weekend I celebrated my first Mother's Day. This has been a difficult holiday for me for quite some time. For years it was the struggle to get pregnant and then last year there was the fear and anxiety over the pregnancy. This year was pure joy. This kid is my absolute world. I pour my heart and soul into everything I do for him and it's nice to have this one day to celebrate this relationship. I am so obsessed with him!

I am in the process of planning his first birthday party which is exciting. I can't believe it is almost time for that.

We take lots of selfies

The only thing better than being Brody's mom, is being batman's mom!

Selfie

He is starting to look so grown up

 

Here we roll!

 

 

Love making him laugh

 

We showed him the video of him laughing

 

9 Month Check-In

I absolutely can not believe that this kid is 9 months. Some days I feel like he was just born and others it feels like it's been forever. Brody is doing very well. We have been very busy keeping up with doctors appointments. Over the last 2 weeks, we have only had one day of no appointments. Everyone has been telling me that he is looking good and growing well. We are now in the 15 % for his weight and he is looking quite chunky (mainly because he isn't on the curve at all for his length). It's funny to be in a waiting room and people comment at how big he is. I laugh and say "We've been working really hard on that." His different specialists are happy with his progress. Here's a breakdown of his appointments recently. 

Cardiac Outcomes: They did an assessment for his development and it is no surprise that he is developementally behind, but we are working on getting him set up with his therapies and Trey and I feel like he is advancing more and more every day. 

General Surgery: I wanted them to look at his G-button to look at some redness. They gave me an ointment and it's been good. I found these cute little pads that go around the button that absorb some of the leakage to prevent skin irritation. 

Pediatrician: 9 month check up went well. He got a couple of booster shots and all seems to be well. We had to get some of his presecriptions switched over to 90 day supplies per the insurance. This has been somewhat of a headache, but once it is all set up should be smooth. 

Eye Dr: The developmental doctor wanted him to have his eyes checked because he really wasn't following the object she had and the CMV virus he had can be in the eyes and cause eye problems. Eye dr said his eyes looked really good and he didn't see any trace of the virus. Brody was following his light up toy just fine. I think Brody just didn't like the boring ring she was trying to use. 

Feeding Evaluation: We are in the process of getting him set up to work with someone on his feeding. We went for an evalauation with an occupational and speech therapist to see who could best help him with his needs. All in all, speech therapy is going to work on his feeds and a little with his communication and occupational therapy is going to work on some of his developmental delays. On a side note, at home Brody is doing a lot better with his baby food. He is willing to take more and we are having more sucessfully attempts than failed attempts. 

Back to the Pediatrician: During his feeding evaluation, the occupational therpaist noticed tightness in his neck and how he always had his head leaning. I always wrote this off as he just wasn't able to support his head yet, but they called in a physical therapist who said he had torticollis. They wanted me to take him to the pediatrician and get his PT orders revised, so they could start working with him sooner. (His PT evaluation was originally scheduled for May). His pediatrician changed the orders and that was that. She has been really good about helping us get everything set up. 

Allergy and Immunology: His immune system has not improved which means that there is probably something going on with that. Brody and I both had blood work done so that they could look at his genetics and try and figure out why he is having immune system issues. 

PT Evaluation: We met with the physicial therapist for her evaluation. She gave us some stretches to do at home and we will start going to her as well. She mainly will work with his Torticollis, but a lot of the stuff she does will also help with his development. 

We still have a few more appointments left. Urology wants to check his boy parts, Infectious Disease wants to check in on his CMV. His levels are at 0, but they want to keep him on the meds until allergy and immunology says his system is better. While on the meds they need to monitor him for side effects. Cardiology will do an echo and check his heart. They have noticed a slight change between the echo he had when he was released and the one he had last month, so they want to check again and see how things are looking. Our cardiologist didn't seem overly concerned last time, so hopefully things are still looking good. 

We stay very busy, but a lot of this should calm down. Most of these appointments we have had recently won't be every month, but once we get his therapies set up we are probably looking at three different appointments a week just for that. Luckily, I have been able to set those appointments up at West Campus which is a much easier drive. 

Mom and Brody Selfie

He is so cute when he sleeps. Sometimes we can't help but stare at him. I love when he looks like he is praying. We finally have him sleeping through the night which has been a huge blessing for Mommy! I bought a cooler pack for his overnight feeds, so I don't have to wake up and change them out. For the first time in a very long time, I have slept through the night. I never thought I would be so excited to get to sleep until 6!

I think he is going to be a blankie kid. He loves to have burp rags or blankets in his hands or by his face. 

It's early in the morning which means it is time to play! 

We go to check the mail in style 

The first time my friends and I were out together with all the kids. The most "normal" I have felt in a while.

Easter Bunny. He did so well. I was really nervous because he was really fussy that morning. He really doesn't care who holds him as long as someone is holding him even if that means it is a giant bunny. 

These two are so cute together. The big one really loves his cousin Brody.