Tuesday, February 25, 2014

3 years !


3 Years!

 


I can’t believe that it has been three years already. Though at times it felt like time was standing still, the reality is that it went by so quickly. Too quickly.  This past year has been a crazy one, for about a quarter of it we were dreading handing him over for another surgery and for another quarter of it we were battling the aftermath of it.  But in the end,  Jasiu proved that he can surpass all obstacles and began living his life to the fullest. Thriving really. Once he was past all the restrictions, dropped the medicine and realized that his little body is now as close to 100% oxygenated as it can be he began to show us what he is capable of. Not that he was behind on any developmental scales, but when I compare the boy we handed over and the fully healed  ball of energy and ENDURANCE, it is like a whole new world opened up to him.

 

In 3 years this boy has endured 3 open heart surgeries, 3 cardiac catheterizations, numerous echos, pokes, prods, IV’s doctor visits, you name it. We expected it all, knew it was in the cards for this boy and now we can only pray and hope that he can handle this new physiology for a LONG LONG time.

 

BUT.. despite all that what you see is a 3 year old boy that loves cars, trains, balls and sports, in all its glory.  You see a smiling little kid or a tantrum throwing little kid depending on the hour or minute, but there is no sign of “half a heart” in this boy. I would say he puts in twice the heart into anything he does. He absolutely loves his Polish heritage and loves his “ciupaga” “kapelus” and “skrzypce” he loves dancing and singing in Polish and can watch videos of the boys dancing to the point that about 50% of YouTube viewings are probably from us for at least 2 different clips. He now has a brand new favorite (thank you ciocia Ania for the introduction) which includes highlanders doing acrobatic tricks, so now we have Jasiu also doing somersaults, attempting cartwheels and standing on his hands… He can go on for hours.
 
Though he can be a stubborn, feisty and sometimes outright naughty boy, he is still so sweet, cute and cuddly as ever [even if it is mostly at bed time].  We love him to the moon and back, stay strong our little man !

 
Party at Pump it Up
 
Cake #1  - (1st picture is with Cake #2)
 
Specially hand made cake by Grandma - Cake #3


 

 

Friday, February 7, 2014

Awareness - { CHD Awareness Week }

          

Almost everyone knows that February is “Heart” month, Valentine’s Day is in February, the American Heart Association begins their “Go Red for Women” campaign spreading awareness for the #1 killer of women, heart disease. Stores are filled with red and hearts, and roses.

But did you know that February 7 through 14 is also National Congenital Heart Defect Awareness Week, spreading awareness for the #1 killer of BABIES.   Chances are that if you have been reading my blog for the last few years or are Facebook friends with me, you know, however the rest of the general public has no idea. 

This is sad because statistically heart defects are one of the most common birth defect affecting 1 in 100 babies (or 1 in 125 or 1 in 110, depending on which statistic you read, but it is still VERY common). That is a lot of babies born every day.  Heart defects range from mild to severe, but it’s still a heart defect! I have  met parents of babies with “just” a small hole in the heart and you can see and sense the same fear, anxiety and sadness in the parents eyes as Joe and I feel since the day we found out about Jasiu’s “severe”/ “incompatible with life [without surgical intervention]” defect.  It is heart wrenching to see your baby in any sort of pain, but to see them post-surgery is almost unbearable. So many parents walk this road and I as well as most of the “heart parents” I have met on our 3 year journey were just as na├»ve as we were before their baby was diagnosed, some of whom only found out only hours before their baby was rushed to the operating room. Can you imagine the shock, we at least had 4 months to “prepare” before Jasiu was born.   

 

Why is this important?  Awareness is the main purpose of this post. Though heart defects are not preventable, most happen before the woman even knows she is pregnant, awareness that such an issue can exist leads to asking the right questions at your 20 week ultrasound. It leads to asking for a pulse ox test before discharge from the hospital (in many states this is now required by law, including IL). It leads to more funding for research for treatment and even prenatal intervention.

 

Awareness is Key to getting the funding.  I am beginning to be active in the American Heart Association and posed a question to my contact about an awareness campaign for CHD Awareness, similar to the “Go Red for Women” campaign.  Though they are not working on anything in that magnitude yet, the AHA  is a good organization to donate. See the flyers that they sent me with information.    Another great organization is the Children’s Heart Foundation, though a smaller organization, nearly 100% of their funding goes to pediatric cardiovascular research, or Mended Little Hearts, I can go on.   Even though when you read how much money goes to research, it is still greatly underfunded compared to other diseases, there are so many great minds that are developing new techniques and new studies that they deserve equal funding.  I am not undermining cancer or other diseases, just wish there was equal awareness. Here is a piece by a fellow Heart mom, it’s worth your reading, she puts it so well. Blog: Accidental Purpose : Apples and Oranges

 

You may ask, ‘why do we need even more funding, wasn’t Jasiu’s CHD “incompatible with life” and now he and many kids like him are thriving?’.  Well glad you asked – We need more funding and research because even though Jasiu’s is thriving, the three heart surgeries did NOT fix his heart. All it did is prolong the life of his single ventricle. The hard truth, though I hate focusing on it, is that the Fontan is likely to fail. Current studies and data shows that the body does not like the Fontan physiology, his vital organs are doing extra work, they are strained and it wreaks havoc on the entire system over time.  Honestly it can happen tomorrow or years from now but chances are it will at some point and the current options at that point are medication and/or transplant. That is not a good option for many many reasons that I will not go into at this time. So we need more research because doctors and researchers are working towards other options, some options that only a few years ago we never even thought were possible but they are becoming a reality because of funding and supporters like you.  These single ventricle kids need a “cure”, a better option, and it can only be done through awareness and funding.

 

With Awareness comes funding, with funding comes research, with research comes hope, with hope comes life!

 

So this Friday wear RED to kick off and show your support for CHD AWARENESS and for Jasiu.

 

Being able to spread awareness through him is such a  blessing because though HLHS is incompatible with life on it’s own, with the help of God, great surgeons, hospitals, research and supporters like you, he is able to live – THRIVE with only “half a heart” but  as thankful as we are, we are still hoping for a full “cure” because as parents we want what is best for our kids.

 
 


Thank you and spread the awareness we owe it to all these kids battling this awful disease.