Emotions

Ok guys...I'm sure you can all tell, but I am HORRIBLE at keeping this thing updated so I apologize.  I am not a writer in the common sense of the term.  I am an emotional writer, meaning that I have to extremely emotional in order to write anything...otherwise it is just me babbling and sound rather dumb lol  And while I have been extremely emotional lately, I have chosen to stay away from blogging about it for fear of letting out more than I am ready to at this point.  But for some reason I felt compelled to blog today.

Today, the day that the world stopped 13 years ago...OR the day that I will always remember as the eve of the 6 month anniversary of the day MY world stopped. The eve of the 6 month anniversary of Camden's diagnosis.  The eve of the 6 month anniversary of the day I felt like I was being delivered a death sentence for my son.  The eve of the 6 month anniversary where I have NEVER been more scared in my entire life.  The eve of the 6 month anniversary where MY ENTIRE WORLD stopped...and the rest kept going.

Tonight I am feeling rather emotional for many reasons. 
1. As you can tell, my world has gone on and it has been pretty great :)  Camden is growing and developing above average for his age (83%tile for weight and 94%tile for height) and his heart is STABLE!!  Our last appointment at TCH was in late June and they were very impressed with how he was developing and how his heart still looked the same.  They again reminded us of how severe his condition was and that we might be looking at surgery when he is 3 or 4 to implant a defibrillator...but that is to be discussed later.  He turned 1 on August 21st and looks more like a 2 year old everyday.  He is the epitome of a happy, outgoing, rambunxious, lovable, total unaware of his disease, toddler.  He is what keeps me going every single day and I thank God for allowing me to be his momma. That kid is some kind of special, I tell ya!

2. This month is Children's Cardiomyopathy Awareness Month and that means raising awareness and spreading the word about this horrible disease.  A disease that I knew absolutely NOTHING about until Camden was diagnosed.  A disease that is taking lives what seems like daily.  A disease that has no real rhyme or reason.  A disease that needs our help in funding.  With that being said, my AMAZING sister decided to get with one of her friends and come up with a fundraiser in Camden's honor.  Ever heard of Jamberry Nails?  No?  Well, you should check them out...they're pretty cool :)  Any way, my AMAZING sister buddied up with a friend that sells these awesome nail wraps and she came up with a design in honor of Children's Cardiomyopathy Awareness Month

 





See?!? Aren't they awesome?!  Any way, this AMAZING sister of mine and her AMAZING friend, whom I have never met, decided to start up this fundraiser to help raise awareness for Children's Cardiomyopathy.  Want to hear the amazing part?  Jamberry has agreed to donate 10% of all proceed to the Children's Cardiomyopathy Foundation!!  This is a non-profit organization that is pivotal in helping to find a cure for this horrible disease and this organization is seriously underfunded.  So yeah, when I heard about my AMAZING sister and her AMAZING friend were wanting to do this, I cried...ok, I bawled.  This woman has never met me and she is helping me and my family.  This is woman that God is working through, ya'll and I for one could not be more thankful.  Here's the link to the party for you all to check it out and buy some cute wraps!!  It's all for a great cause....and you don't have to pour a bucket of ice over your head to raise the awareness for it ;)
https://www.facebook.com/events/775367112520501/

3.  There have been some other events that have occurred in my family that I'm not quite ready to share yet, but just know these need prayers too and they are contributing to my emotional night.

4. I follow quite a few Cardiomyopathy pages on Facebook and lately I have seen so many posts of kids taking a turn for the worse, or being taken WAY too soon.  And by kids, I mean BABIES!!  These babies have not lived yet and because there is not a cure for this disease, these beautiful babies lives are being lost.  It tears me apart to know that parents are going through losing their child to this disease. I don't understand why it has to take babies...I don't understand how those parents are going to continue on...and I don't understand why we haven't found a cure yet. This infuriates me and brings me to tears all in one.  These babies....these beautiful, precious babies.  Tonight, and every night I will pray for you

5.  Tomorrow will be 6 months since Camden's diagnosis.  SIX MONTHS!  It seems to have gone by so quickly yet still seems like it was yesterday.  It is still hard to believe I have a son with a horrible heart disease.  It is STILL hard to say those words, no matter how many times I say them.  And yes, I have had to stare myself in the mirror and say them until I stopped crying because they are words that I speak about almost daily.  Six months ago on this night I was nervous, but had no clue the storm we were about to walk in to.  No clue that our beautiful son had such a shitty, shitty heart.  But thank God we found it when we did.  Camden is under the care of a great cardiology team at TCH and he is doing wonderful!

A few days ago a friend of mine had posted something to one of the Cardiomyopathy groups and someone that commented had said this
"Life isn't promised for any of us...any one of us could be hit by a bus at any moment, cardiomyopathy or not, but for families dealing with this reality, it's kind like we live in the center divide of the freeway.  The risk is greater and there is a constant reminder as freight liners come screaming by our front door."
This is so very true.  I have always, for as long as I can remember, lived in fear of losing a loved one.  And now, this is my reality. 

So tonight, I leave you with this...love your loved ones deeply and fiercely.  Never let them go a single day without knowing the depth of your love.  No one is invincible and tomorrow is NOT a promise.  Live like our heart warriors live...unaware and totally happy.

Sweet dreams, y'all

 

~~~Heart Warrior Momma

Life as of late

So, I realized I have not written anything for a while and there are a number of reasons for that
1. I'm a teacher/coach and this time of year is absolutely NUTS-O for us
2. We are in the heat of wedding planning (just 20 days away)
3. I am a mom to a completely adorable little boy and all my free time I want to be spent with him

and then there's the last reason, probably the truest reason out of all of them...

4.  There is part of me that feels if I don't write about it, if I don't talk about it, then Camden's disease isn't real

While I know his disease is 100% real and is not going away, not talking about it is a nice escape from the scary reality of it all.  But, since it is real and I promised myself to use this mode as an outlet for my fears, worries, dreams, and hopes; here's an update on what's been going on in our world since I last posted.

Our visit to TCH (Texas Children's Hospital) was quite an experience.  It was a long drive there, where Cam did great and slept most of the way, and an even longer appointment.  Our appointment was scheduled for 1:00 and since we had never been there, we decided to get there early so we would be on time.  On our way to the hospital I started feeling very nauseous but figured it was just from nerves, being in the car for so long, and not eating for a while.  Once inside the hospital, we made our way to the elevators and found out we had to go up to the 20th floor for cardiology.

I REALLY GOT NAUSEOUS THEN

We walked out of the elevator and through the glass doors for the cardiology floor and I started to tear up.  I walked to a corner to try and gather myself but that's when I lost it.  My chest got tight. I couldn't breath. I had tunnel vision. I felt EXTREMELY nauseous. I started sweating. I could not control myself.  I didn't know what was going on.  (Of course, we all know that I was having a pretty bad panic attack)  Luckily, my wonderful mom brought me back to reality. After a few minutes I was able to compose myself and walk over to join the rest of the family (Yes, we brought the whole fam-damn-ily with us to Houston)  We got Cam checked in and they told us just to wait and they would be calling us back in a little while.  He was taken back for the height, weight, pulse, and blood pressure then we were sent back into the waiting room to wait for the sono tech to do the echocardiogram.  All of this waiting was driving me nuts!!  I just wanted to see the doctor already...little did I know it would be quite a few more hours before that would happen.  

Fast forward a few hours and the doctor has walked in and is now talking to us about Camden's disease.  He told us from the echo that his septum wall was at 1.1cm and he had a severe obstruction.  He went through the whole schpeal of explaining the disease to us...AGAIN, just so we could get in our minds how this disease works and understand it all.  When he got to the "worst case" part I wanted to tell him to stop, don't even tell me....that wasn't going to be my son.  But the fact of the matter is that it COULD be, so he continued....

He made us all very aware that while Camden is doing great and isn't showing any negative signs or symptoms it is very likely that he could go into cardiac arrest.  My mom, being the amazing woman that she is, tried her best to get him to tell us that wouldn't happen to Camden, that he is a different case, but that's just not how it is.  We were all faced with the cold, hard truth that Camden could go into cardiac arrest at any moment and there wasn't anything that any one of us could do about it.  Now, I know I haven't been a parent for very long, but I'll tell you....that is THE hardest part to swallow.  Probably the part that has kept me from writing for so long, I don't want to admit it. 

It took us (my mom and I) to actually wrap our heads around that, but once we did the doctor told us he wanted to send Cam home on a 24 hour heart monitor, just to see what his heart does outside of the hospital; upped his dosage of propanolol to 9mg a day, and said that he wanted to see us back in 3 months.  He also recommended that we get an appointment with the genetics clinic to find more out about Camden and how he carries this disease.  When we finally left the hospital, 6 HOURS LATER, I was emotionally and physically exhausted. I still didn't feel how I had expected to feel, but like I said in my previous post...I'm not sure that I will ever feel good when leaving one of his appointments.

The waiting to go back has been hard.  The bigger he gets and the more active he becomes I can't help but be scared that he is pushing his little heart too hard.  While I try not to focus so much on that, it is pretty difficult.

My sister sent me a link today about an article on "Mother's of Sick Kids" and there was something in that article that really resonated with a tip of what I am going through.  The article talked about typical things that mother's of sick kids go through that other mother's do not. 

"Grieving the loss of the child you envisioned yours would be and coming to accept the reality of the one you have"

Those are some powerful words right there, and I'll tell you....they can't be truer.

There are things that Camden will NEVER be able to do, never be able to experience, never be able to even try because of his disease and that tears me apart inside.  I am going to do my best to give him the most amazing life as possible and not let him focus on things he can't do, but for now I'm grieving for those things.  

So there you have it, our life as of late...

--Heart Warrior Momma

Doctor appointments

I figured that I would give everyone an update on Cam since that is why you are all reading this.

On Friday, March 28th we had Cam's first cardiology appointment since his diagnosis.  And let me tell you, I had anxiety about this appointment all week long.  I was so scared his disease was going to worsen and he was going to be hospitalized again.  Of course I let my fears and worries get the best of me.  Cam's doctor was very pleased with the progress he was making with the propanolol.  His heart rate was 117, pulse ox was 100%, and he had a normal EKG.  After the doctor came in and did the echo she said that his septum wall was still measuring 1.7cm and his gradient reading was anywhere from 54% to 77% for the duration of the echo but she did not want us to focus on the gradient as it changes so frequently.

In case you are having a hard time following, all of this is GOOD NEWS!!   I was glad to hear my fears were just that, fears.  However, leaving his appointment I expected to feel much better than I did.  I still had knots in my stomach like something, I have no clue what, but something was wrong.  Maybe it's just me wishing for a miracle, maybe it's me still thinking about the worst, or maybe I will feel this way for the rest of my life...either way, it wasn't a feeling I expected.

Cam has an appointment with the team at Texas Children's Hospital tomorrow, April 1, and I find myself feeling all of the anxiety I felt last week.  We are finally getting to meet with the experts and hear what they have to say about Camden's condition.  I am worried sick that they are going to tell us it is a lot worse than we are thinking.  Even though every other doctor has told us he is doing great, I am still worried sick.

I am hoping for the best tomorrow.  We have a long day ahead of us tomorrow with driving to Houston, and at least a 3 hour appointment with the doctors running all kinds of tests on Camden.  I hope my baby has a great day, I hope Sean and I are strong enough for each other, and I hope the doctors are able to answer all of our questions.

For now I sit, and wait, and worry...

--Heart Warrior Momma

I just don't get it...

I have never been a woman of extreme faith, nor have I ever claimed or pretended to be.
I grew up in a church, was baptized, went to youth group, and on many mission trips....but after I graduated high school, I think I went to church maybe 10 times?  I have never felt "religious".  I have always questioned my faith and tried to find where I fit in that scale.

On the day of Camden's diagnosis, after the initial shock and utter disbelief had worn off, I was angry....pissed even.  Angry at the doctors for not catching this sooner, angry at myself for possibly giving him this disease, but the most angry at God.  If there was such a thing as God, how in the world could he allow such a horrible disease?  And why in the hell did my son, MY BABY, have to get it?!?!  I could not, and still can't, wrap my mind around it.

Why does a perfectly innocent child have to have such a horrible thing happen to them when there are terrible people in the world that are perfectly healthy?!?!  I don't get it...it doesn't make sense and it isn't fair. (please spare me the "life's not fair" speech)

I have asked so many people for prayers because it seems like the right thing to say, but does that even matter?  Why pray to something and someone that did this to my baby?  Once again, I just don't get it.

I am trying not to hold onto my anger, but it's proving to be rather difficult.  I can hold it together in front of people but on my drives to and from work is where it gets messy.  I yell and scream at God. I cry. I curse him. I hurt. And I am angry.  Angry that my child has this disease, angry that this will be with him for the rest of his life, angry that there are no answers to our questions.  Just plain angry.  And still, I just don't get it.

--Heart Warrior Momma

What can I do??

Since Camden's diagnosis everyone has been so loving, warm, and consoling.  We have received many calls, texts, messages, comments, and visits.  The way people open up and show compassion when your world is knocked on end is amazing to me and we appreciate every bit of it...but there is something that irks me to no end.

Upon hearing the news about Cam, most people's response has been "Oh my!! I am so sorry...." And my thoughts on that are, Why?  Why are YOU sorry?  Did you give my son this disease?  Did you wish this upon my family?  Of course not!  You say sorry when YOU have done something...
I'm sorry I broke your lamp.
I'm sorry I spilt wine on your couch.
I'm sorry I ruined your favorite shirt.
YOU caused those events so you should say you're sorry.  You don't say you are sorry when you find out my son has heart disease.

At the end of their "I'm so sorry" comment, people say "Let me know if there is anything I can do."  So, here is what you all can do.

STOP BEING SORRY!

Plain and simple.  There is no need to be sorry for us.  Instead, be thankful.
Thankful Cam's pediatrician didn't just wait it out
Thankful we found his diagnosis so young
Thankful he has not been affected by all of this
Thankful the beta blockers are working
Thankful we have an AMAZING family to help us through it all

Cam is a fighter and we will all get through this, but we won't get through it by people feeling sorry for us.  We will get it through it by being thankful he is a happy, healthy baby boy.

Lift Cam up in prayer daily and thank the Lord he is healthy in every other way possible.  And next time something major happens to someone, think twice before saying "I'm sorry..."

---Heart Warrior Momma

Words

Heart disease
Severe
Hypertrophic cardiomyopathy
HCM
Beta blockers
Surgery
Surgical myectomy
Heart transplant
Cardiac arrest

These are words I never thought would be a part of our lives...of my son's life... my 6 MONTH OLD'S life!!  Unfortunately I have had to familiarize myself with these heartbreaking words.  While some of them are not what we are facing at this particular moment, they are possible and part of this disease.  Even as I typed some of them my hands were trembling, my heart was racing, and tears are welling up in my eyes.  I still can't even say them all without crying.  These words are now a part of our lives...and scary as they may be, they are our reality.  I am going to try and describe these words to you so that you may better understand our little man's condition.

Heart disease-  Cam's poor heart is not well.  We are so blessed that this disease has not stunted his growth or development.  The fact that his heart is so incredibly diseased and that it has had no adverse affect on him at all is amazing.  This helps me find comfort.

Severe-  His condition is bad...not the worst it could be, but it is bad.  This by no means is a death sentence, please understand that, it is just something that must be monitored closely.

Hypertrophic cardiomyopathy- This is the name of Camden's disease.  Basically his heart is too strong...

 

Above is a picture of two hearts, on the left is a "healthy" or "normal" heart and on the right is a hypertrophied heart.  As  you can see, the muscle on the right is much larger...aka too strong.  Because the muscle is too large, it does not allow for the lower left ventricle (the lower side of the heart on the right)  to fill completely up with blood and push it through the aorta to the rest of the body. 

 



• This is what amazes me about Camden:  According to his cardiologist, the thickness of the septum muscle (the muscle between the two ventricles) is "normally" 6 mm...when they did the echo, they found that the thickness of Cam's septum muscles is 17 mm!! Almost 3 times the size it should be!  Hearing that was originally very scary, but to think about how well he has developed, how much he has thrived, and his ability to constantly be on the go with his heart performing so shitty completely amazes me!

HCM- an abbreviation for Hyptertrophic cardiomyopathy.It is important to know that my little man's heart will never be "normal" the thickness of his septum wall will never decrease and there is nothing they can give him to prevent it from increasing, all we can do is hope and pray. 

Beta Blockers-  These are used to slow the heart rate down to allow for the left ventricle to fill up with as much blood as possible and then forcefully shoot that blood into the aorta...just as taking slow, deep breaths allows for oxygen to get to the rest of the body.  Camden is currently on 5.5mg of propranolol and is doing great!!  The cardiologist eventually hopes to up his dosage to 8 mg.

Surgery- the possibility of surgery is there, but it is not something we are to focus on.  It is just something  I have to mentally prepare for in case we do get to that point.

Surgical myectomy-  This is a procedure where they go in and scrape off some of the muscle.  The cardiologist assured me that we are not going in that direction right now, but should his muscle thicken, it is something we will have to consider.  Part of me wants to have this procedure done for my piece of mind...it allows the left ventricle to fill up with more blood, and doesn't make the heart work so hard.

Heart transplant-  WE ARE NOT HERE!!  But, many people with HCM do get heart transplants.  I have a hard time with this because if my baby does need a heart transplant then that means I have to pray for someone else to lose their baby and as a mother, I would never wish that on anyone.

Cardiac arrest-  This is the scariest of all these words to me...the possibility that my baby could go into cardiac arrest.  The good thing is that the beta blockers will not allow his heart to reach a dangerous point...but the thought of "what if" is in the back of my mind every single day

•  Because this is a possibility we all asked to be trained in infant CPR.  Now, I have had CPR training before as I have worked with kids for quite a few years, however when it came time to demonstrate that we knew how to perform CPR on the infant  doll, I lost it.  I had never imagined I would have to think about doing this on my baby boy.  This was a very hard experience for me to get through in the hospital...thank goodness for the support of my family!

Words. Scary words.  New words.  All of these words are now a part of my life, Sean's life, Camden's life, our families lives and while they are very scary, it is important to be educated and prepared for all of them.

Camden has shown us how strong he is from day 1, basically holding his head up from the day he was born and now his strength is more important than ever.  They call kids with this disease "Heart Warriors" and I think that is perfectly fitting for my little fighter

--Heart Warrior Momma

The day my world stopped

I have never done this blogging thing before, but since Camden's diagnosis I have needed write down my thoughts, feelings, and fears.  So I have decided to keep this blog so everyone can be aware of his story, and our journey through this terrible disease.

In order to share Camden's story, it's important to start from the beginning. 

Camden had a cough for a while, I thought it was because he had just learned to crawl around and was now in closer contact with the pet hair and the allergens in the carpet. His cough got worse so my fiancé took him to the doctor and they said it was normal and would go away on its own. One week later I felt like something wasn't right so I decided to take him back to the doctor and insist that they now convince ME, momma, that he was ok...that was on Valentine's Day. The doctor (not his normal pediatrician) was doing his exam and lingered a bit longer on his heart. He asked me if Camden had ever been diagnosed with a heart murmur. Of course I said no, and he assured me that it was probably nothing, it sounded to him like a VSD murmur but just to be safe he recommended that we see a cardiologist to get it checked out. I freaked of course, but we went on with the appointment. He decided that Cam was wheezing and it might be asthma so he put him on a nebulizer. I left the doctor office and immediately called my fiancé crying. I was so scared.  I then proceeded to call my mom, his mom, and my sister.  All of whom assured me that Cam would be ok.  There are TONS of babies that have heart murmurs and they usually close up by 2 years old. My fiancé had a VSD murmur when he was younger and it closed up by the time he was 12 with no complications so I calmed down a bit.  We called the list of recommended doctors and the earliest any of them could get us in was March 12!!  Talk about a freaked out momma...I'm impatient to begin with but now that the possibility of my son having a heart murmur is on the table I was 10x more impatient!!

SO... fast forward to Wednesday, March 12 and we are at the cardiologist appointment. They did the initial check up and didn't see anything wrong, his pulse ox was 100% and even his EKG was perfectly normal!! Camden was the epitome of a perfectly happy, healthy 6 month old baby boy!! The cardiologist came in and listened to his heart and agreed that it was probably a VSD murmur but wanted to do an echo just to be sure. THANK GOD HE DID!! Once the echo was over, it took quite a while for him to come back in the room and I knew right then and there that something was wrong. As soon as the doctor entered the room, you could see it on his face....he said "I am so sorry, but Camden has sever heart disease" I know he kept going but I honestly cannot remember anything else he said. Luckily I had my mom and fiancé there with me... I asked what we do next and the doctor said that since he is so severe that he has to be admitted to the hospital immediately. We weren't allowed to take Cam to the hospital by ourselves....we had to wait for the ambulance to get there. The doctor told me he would be put on beta blockers and monitored for at least 24 hours and that if they didn't work that we would be transported to Houston for surgery. I WAS SCARED SHITLESS!! I thought " there is NO WAY this is happening to MY son!!  This is the kind of stuff you read about or see movies on Lifetime about...no way in hell this is real!" I still had really no clue about this disease that had been diagnosed and was so confused. When we got to the hospital they put Camden on 4mg of propranolol 3xday with the hopes of increasing his dosage. We were told the next day that the propranolol was doing its job and his heart rate was decreasing well with no side effects...the cardiologist came in and told us that she wanted to do another echo on Friday to give the propranolol more time to do its job and upped his dosage to 5 mg 3xday. During the echo on Friday I had her explain everything to me. She told me his original gradient from the first echo was 100 and he was now down to 47...YAY!! We were all so relieved....then she dropped the bad news on us. His septum muscle was at 17mm. I wasn't quite sure how bad it was until she told me that a normal heart has a septum thickness of 6 mm.  I felt like my whole world fell apart all over again.  Even with the excellent news of the gradient decrease, I could only focus on the negative. Luckily, Camden was doing so well they had no problem with sending us home later that day.  They upped his propranolol to 5.5 mg 3xday and we are set to go back to his cardiologist in two weeks.  Because he is so severe and they aren't very equipped to treat him in San Antonio, should he get worse, there is a team of doctors in Houston at Texas Children's Hospital (TCH) heading up his case.  We have to schedule an appointment to meet with them so they can do some tests and we can familiarize ourselves with the facility.

I am having the hardest time still wrapping my mind around all of this.  And I am still unsure of how to deal with it...I have cried every single day since he was diagnosed and not sure if the day will come when I don't cry.

For now I will hold on to the fact that my beautiful baby boy does not seem to let his disease slow him down.  He is still the happy, healthy, active little monkey we know.  It's crazy how I have learned so much from HIM in the past couple days...

--The Heart Warrior Momma