Our "normal" trip to the zoo

  Every Saturday we try to do an activity together as a family. Thankfully my husband has weekends off and since we don't see him much during the week we are grateful for this time together. We had never been to the local zoo here yet with the boys and we had a coupon of course, so we decided to go. 

  We got there right when it opened,it was a beautiful day. We got started walking. We brought a double stroller for the boys just in case the zoo was too much. Immediately my boys wanted out of the stroller and walked to the exhibits all on their own.  They loved seeing the animals and being out in a new environment was an adventure for them.

  As we continued exploring the zoo and going from exhibit to exhibit I couldn't help notice something. My 3yr old Shane who has heart defects, wanted to take breaks and ride in the stroller. I probably wouldn't of thought twice about this if he was the only child . His 2yr old brother wasn't slowing down at all. When I offered the stroller to him when Shane would get in Jeremy refused. Jeremy has a healthy heart. He didn't stop once wanting the stroller till the very end when nap time over took him.

  Of course I knew Shane had heart defects. We suffered with hospital visits and surgeries his first year of life. I always knew he gets a little more fatigued running around our house. SO why did Shane's frequent need to sit in the stroller surprise me so much? I guess it's because as the appointments get few and far between I "forget"? I also see him as a young boy now and not a baby who's activity level is quite different now! As Shane grows his precious heart is taking on more and I'm learning his new "normal" activity level. 

  These moments In life I want to be "normal" and for the most part they are. It's just a reminder once again of my sons fight with CHD in infancy and daily with every heart beat he takes. I hate being reminded of more open heart surgeries to come and think of the pain he will be in, the caution in his daily activities he will need to take. I'm grateful his condition is "fixable" and that he will continue on and be with us as long as he is monitored by doctors. Shane will always be behind his younger brother in energy level, but that doesn't mean he can't just take a break and continue on like Shane does. We still had a great time at the zoo no stroller ride will stop that. I will soak up these times as much as I can. I love being these boys mom.

Emily😃

Spreading awareness for CHD (congenital heart defects)

  If you are Facebook friends with me you know about this week. February 7-14th is Congenital Heart Defects Awareness week.February along with Black History month is also Heart month. As we talk about love and see hearts all around us we are reminded of Hearts and some are broken ones. As
seen in previous posts my son was born with several heart defects and still fights CHD with every heart beat he takes. This is something that was unknowingly thrown into my life with a newborn. So this is something I'm passionate about. Here are some facts about CHD....

• Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
• Congenital heart defects are the #1 cause of birth defect related deaths.
• Congenital heart defects are the leading cause of all infant deaths in the United States.
• Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.
• Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood. 
• More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
• There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
• In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

Research Allocations & Impact

• Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
• Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
• The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem.
• In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.
• Via ...http://www.childrensheartfoundation.org/about-chf/fact-sheets 

Do these facts surprise you? They surprised me too. When I was pregnant I didn't hear or know of anything about CHD yet 1-100 babies are born with them. I had no knowledge that my baby had anything wrong with him till after he was born even after having the normal routine ultasounds. After Shane's birth his cardiologist even looked at the ultra sound videos and couldn't see anything. Some people are never diagnosed because they go undetected. Most however that are diagnosed as said above will have major Open heart surgery to repair it. In Shane's case he will have multiple surgeries throughout his life.  

The CHD road not only affects the person itself but the families surrounding them. Its a long hard road and doesn't stop at just heart surgeries.  Here is a short version of my sons Shane's Story.

Shane 8 days old before first Heart Surgery

Shane 3 m old After 2nd heart surgery

Shane recovering in hospital

 At 8 days old the day after Christmas our precious Shane stopped eating and breathing weird, as first time parents we were very unsure of what was normal. We decided to take Shane to the ER around 2am. When we arrived his body temp had dropped to 94 degrees, they couldn't read any blood pressure and immediately was put on oxygen. Within a half hour we were told he needed to be life flighted to primary children's hospital. Shortly after that he was put on the ventilator because he no longer could breathe on his own and his body was very lifeless. When we got to Primary's he was diagnosed with two holes in his heart(ASD,VSD) a pinched Aorta (Coarctation)right outside of his heart. He was also diagnosed with left ventricle non compaction cardiomyopathy a poor pumping left side of his heart. Shane has endured two heart surgeries and barely missed being listed on heart transplant list. Later on Shane was diagnosed with a bicuspid aortic valve leak (BAV) because of this leak his heart will need multiple valve replacements (open heart surgeries) throughout his life. As doctor projects the first before he is twelve.
Every time Shane heart beats it is fighting. Our story is just 1-100 born every 15 seconds. Not only do we endure heart surgeries and countless doctors appointments( that are an hours away) but most CHD kids endure, feeding issues, physical therapy, developmental delays, ENT oxygen dependency, and more susceptible to sickness .As is mostly the case in Shane's life. Help spread CHD awareness. 

There is a GO RED awareness going around to change your facebook profile picture to help others feel free to choose any of these pictures below. :) Or google CHD Awareness pictures.:) 

 Lets  get the word out about these defects. So Change your Profile picture to Red or a heart. So we can spread Awareness.

One of many echos done

 

Wearing Red for my Warrior

 Every day Research and medical science is evolving and there are things being done today that were not even known 20 or even 10 years ago. If you would like to donate for research in discovering more about these defects and finding out why... you can donate here. http://www.intermountainhealinghearts.org/donations  This organization donates funds for research and helps families suffering with CHD.  

Post Tonsil/Adenoid Removal Update

Shane had his follow up with his ENT today at Primary's. It's been about 6 weeks since his tonsil/adenoids and vocal chord injection. The doctor said  it all looked like it healed well. We also discussed the improvements we have seen in Shane since the surgery. There have been lots! He hasn't been having frequent gasping episodes, he breathes normal when he sleeps, and has been sleeping better as far as quality of sleep it seems too. Shane also hasn't been coughing after everything he drinks. Shane also doesn't sound so nasally and congested all the time now. We haven't noticed any difference of volume of his voice which was a question, but we are not concerned about that at this point. So the question is now are some of these improvements because of tonsil/adenoids removal or vocal chord injection? The vocal chord injection only lasts around 5 months so if things start coming back then we know it' was improved because of the injection. If things start coming back then he said they will look into a nerve vocal chord surgery through Shane's neck that will be a permanent fix. So we will see what time will tell. Our next appt is in July.

 We also met with genetics last week this was the first time in 3 years since we saw them last. Shane has a duplication of the 16th chromosome so they want to see for study purposes if any things Shane possesses are related with this duplication. Shane has some of the characteristics  related with this duplication and as he developed other things may "occur" that they see with duplication. We are not to worried about any of it but I think it's fascinating and would love to get us tested too (nathan and I), but not in the cards right now.

As for us the Cox family...  We were all sick over valentines, all with different sicknesses. Shane started his special Ed preschool on jan 26th with the time I wanted.

First Day of Preschool

 
 After going through everything there were moments where I didn't even think he would come home from the hospital. Here we are the first day of preschool. What a battle this has been he may not be at a normal preschool to start off,but I know that this special Ed preschool has the needs and training to help in his speech and development delays. I'm so grateful there are wonderful programs like this before school starts to prepare him and get him caught up to what lies ahead.

 It can be such a scary task sending you hardly verbal 3 year old to teachers you don't know. Their training however is specialized with these special kids who need that extra boost in life.

Feelings relived

  Shane my 3 year old who has/had heart defects got his tonsils/adenoids out last Friday. Since he has a paralyzed vocal chord also,  his ENT Suggested also injecting his vocal chord with this anti wrinkle type serum. No not botox! :) This surgery would help with his breathing(minor sleep apnea/breathing blockage when sleeps)  and hopefully with his swallowing also. I wont bore you with all the technicalities, but this surgery was needed. 

   Although as a mom you question is this really needed? Does my son really need to be put under anesthesia and as a heart baby this means a ton more than a perfectly healthy baby.  Does he really need these out?You always think of the risks out weighing all the good that come from it.  As a mom who spends many trips traveling down to Primary's children's Hospital I have learned the doctors will not suggest surgery unless its absolutely necessary. I had to trust the doctors, nurses and everyone else with this procedure. 

   This Surgery though its not nearly as serious as Shane's two heart surgery's it brought back memories in every aspect. Having Shane Fast before surgery brought up the memory of trying to make Shane as a baby fast. Getting him registered putting him in his hospital gown. Last but not least the most horrible memory of saying goodbye at the "yellow Line". Where the anesthesiologist and Shane continue going while you have to stop. Saying goodbye to my much older Shane made it even harder its different when they are babies knowing they wont remember this. Shane is starting to get to the age where he will start understanding and remembering these things. My husband and I both cried as we got to the waiting room. This also brought back memories of hours of waiting while Shane was in heart surgery. We pointed out where we sat each surgery and all those emotions come flooding back. I looked around the room hearing some conversations of surgeon updates these children have bone surgery this one having this surgery. Seeing parents crying, pacing because their waits had been long. I just wanted to go hug everyone and say I have been there it will be ok. 

  All went well with Shane's surgery, he had a tough time coming out of anesthesia which he did before many times but, what a trooper he is. It was very different seeing my big 3 year old actually know mom was around and wanted to be held and communicate with us. Very different from just a baby in a bed. Since Shane is not " normal" he stayed the night at Primary's after surgery for observation and to make sure all was well. My husband stayed with Shane at the hospital and I went to my in laws where my little 21 m old was getting watched by grandma and grandpa. I spent the night saw my little Jeremy briefly in the morning kissed him goodbye and headed back to the hospital. 

  We made it home. recovery was full of many sleepless nights and meds around the clock. We made it through like we always do. Now we will just hope and pray all future surgeries go as well. :) 
  

Our Heart Journey is on going....

  First we were sadden to hear the our beloved Cardiologist for Shane is leaving Primary Children's Hospital and going to Denver children's hospital. I took this news very hard.... I cried, got sick to my stomach then cried some more. Its not easy not being able to say goodbye to a doctor who shed tears with you,fought for your son and gave you difficult news,but also positive news. Laughed with us and saw our miracle boy grow. She knew our history and didn't want another replacement it just wouldn't be the same. So attending Shane's annual Heart appointment with out our familiar doctor I was worried. Not only was a worried about how Shane's heart was doing, but the "new doctor" too.

  We woke up early and left our home at 7:30am for an appointment at 9am. We arrived early but got in early. The echo is always first and usually takes some time

I'm amazed at how well Shane always does laying there having a stranger put goop and a strange device moving around on his chest. For at least 30 mins or more. He is such a trooper!

 

  I was watching the screen of the echo tech and nothing ever gets easier no matter how many times we do it. The more you do it the more familiar you get with the pictures of the heart and you can clue in to what is good or bad. Sometimes it's just a feeling sometimes you see it by the sloshing of red and blue together that shouldn't be together.  These appointments never get easier. 

  After the Echo we wait a little more because the doctor looks over the results. We met our new doctor's assistant she was very nice and we discussed what was new with Shane. Then the doctor came in and did it again. Our new doctor actually specializes in abnormal heart valves so we were actually grateful we got him and I'm sure our old doctor had that in mind, when we got refereed to him or however it works. After we got him all caught up. He gave us the results of the Echo, Good news is always first. He said that Shanes coarctation look great,VSD, ASd , patches look great also and his left side of his heart was pumping fantastic.  Then he gave us the bad news. Shane's BAV bicuspid aortic valve had a significant more leakage than the previous year and he said that surgery would be needed as it gets worse.  Most likely before he turns 12. As Shane grows his heart grows too so he might need two valve replacements before he turns 20. We will just wait and see. 

 The news of more open heart surgeries several in fact is hard to take, nobody wants to see your child suffer through that. As shane's valve leaks gets bigger his heart works harder and they dont want all the same things to happen like before. So we will go back in another year and hopefully not any sooner.:)

Happy 3rd Birthday my miracle boy!

  There were many days as you were fighting for your life I didn't think this day would come. This road has not been an easy one,. Your strength has fought many statistics and proven doctors wrong. Your smile allows me to see heaven and always be reminded of the TRUE miracle you are. When you throw your fits I remember you are strong willed,because thats how you fought for your life. I will always remember your first word because it was such a tasks for you to finally say it. I know this journey is not over with you and as you grow I continue to fight for you. 

 My precious Shane, I will not stop fighting for you because you didn't stop fighting when your mom wanted to continually hold you. Shane your mom loves you and I hope you will understand one day that the lord saved you and gave you life when he didn't have to. He has a plan for you and I hope you full fill every bit of it, whatever it may be! You are such a great big brother and I love seeing your personality develop and Change. You were truly a blessing for us. I love you! Mom