Saturday, February 7, 2015

3 years

Today is the first day of CHD awareness week.

3 years ago, we made the journey to Children's Hospital of Wisconsin​ where I had a fetal echocardiogram done.  They brought us to a conference room and informed us that our unborn baby has Tricuspid Atresia with a Transposition of the Great Arteries and Coarchtation of the Aortic Arch.  Although we were terrified, we finally had answers after weeks of waiting for this appointment. I know this sounds like mumbo jumbo medical jargon to some of you, so I will explain.

Tricuspid atresia is the absence of the tricuspid valve.  That valve allows blood flow between the right ventricle and the right atrium. There is no blood flowing between those two chambers, causing his right ventricle to be too small to function.  In order to compensate, Owen's heart created two large holes, one between his two ventricles and one between his two atriums. This makes him a single ventricle patient.

Transposition of the great arteries is when the aorta and the pulmonary artery are switched. The pulmonary artery takes the de-oxygenated blood to the lungs to oxygenate it and returns it to the heart through the pulmonary veins.  The Aorta then takes the oxygenated blood out to the body. For Owen, all this blood was mixing in his heart(de-oxygenated and oxygenated) and his body/organs do not get enough oxygen.

Coarch of the Aortic Arch means his aortic arch is too narrow for blood to pass through.  They placed a patch in his aortic arch during his first open heart surgeries to widen it enough for blood to pass through.

In order to create blood flow through the body, they do a series of surgeries called The Norwood, The Glenn, and The Fontan.  These are temporary fixes and usually the Fontan needs to be revised in teen-adult years, if these kids don't receive heart transplants first.  Will the Fontan be Owen's last surgery? Most likely not, many things could happen in the years to come, he could go into heart failure and need a transplant, he could need a fenestration closed, he could need a pacemaker, who knows? There are all things that stay in the back of our mind.  The Fontan seems like it will be the end, but it never really ends for our kids.  They go through life using half their heart which causes many issues down the road such as poor weight gain, poor circulation, in some cases stroke or heart attack, to name a few.

What does this mean for daily life? On a daily basis we administer meds to Owen.  He receives baby aspirin as a anti coag, Enalapril to help regulate blood pressure and improve heart function, and he drinks Pediasure to help him gain weight.  We monitor him for signs of heart failure constantly (excessive sweating, blue lips/fingers/toes, excessive breathing, tiring out faster than normal).  We need to be extremely careful when out and about so he isn't exposed to someone who is sick.  That often means we need to cancel things because someone has or is sick.  It's a risk we can't take with Owen.  Even a simple cold or viral infection could cause him to be hospitalized in an ICU fighting for his life.  We go to the pediatrician's office at least once a month to make sure that the cough or runny nose he woke up with isn't something worse. We limit his public contact in cold and flu season, because everything goes around(And this year has be particularly scary) and he usually ends up catching it.  It's scary how easily he catches something from others.  We spend a lot of time at home, but that's okay because I have Owen here in my arms.

Some people may think we are overprotective or overreacting when it comes to germs and Owen, but honestly I'd rather be seen as overprotective than be pitied because my child passed away from a viral infection he caught.

So this brings me to my challenge for you for Heart Week/Month.  I want you to search for information on the internet on CHD's, I want you to educate yourself so you know what to expect if it ever happens to you, because honestly, the day before we received Owen's diagnosis, I wasn't a heart parent yet, I was a regular parent just like you.  Your world can be flipped around by one sentence and why not be ready for it, why not be prepared, know the facts, learn that it's not a definite death sentence, know your options.  If you are having trouble finding information, please ask me, I can provide websites. I want the whole world to know the facts.

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