February is American Heart Month won't you be our Valentine?

This blog post is a beautiful one! We worked with Zachary's Mission and a very special family, the Kaushansky Family to showcase their story for American Heart Month. We invited Jessica, her son, Judah and Patricia, the founder of Zachary's Mission to join us for a Calendar photo session and share their story.  

Thanks Cindy & Bella Amici Studio for lending you beautiful studio space for the calendar photo session!

Thank you Jessica, Nate and Judah Kaushansky (aka J-N-J) for sharing your story!

From Jessica,

My name is Jessica Kaushansky. I’m a former actress, artist and graphic designer from Pittsburgh. My son Judah was born on September 10, 2012 with an undiscovered Congenital Heart Defect called Truncus Arteriosus.  Since that time forward, I am now Hospital Mom.

Judah, even at two, still requires 24-hour medical care. He has a tracheostomy, g-tube, pacemaker and 10 different medications to control his heart. His health may be a handful, but he’s the most awesome kid in the whole world. My husband is an IT wizard and I am full-time Hospital Mom. We keep a lot of love, music, laughter and fun in our lives – even if we’re always one step away from the Emergency Room.  We can’t complain about a thing! We are incredibly blessed with a beautiful and supportive family, an amazing little toddler and tons of love!

We were also truly blessed to be assisted by Zachary’s Mission, and to know Patricia Vince. This organization is a lifeboat for hospitalized families in so many ways – from gas cards to help with travel expenses, meals and (my very favorite item ever) the Zack Pack.  The Zack Pack is a handy backpack filled with all sorts of essentials for the uncomfortable life in the hospital. I still use my Zack Pack almost every day!

It is difficult to explain what a complex and painful journey it is to have a child with a CHD. But awareness, research and supporting organizations like Zachary’s Mission can go a long way to help critically ill children and their families.

You can read about Judah’s life’s journey at JudahK.com. If you’re a parent of a child with medical needs, you can find reviews and helpful tips at HospitalMom.org.

To find out more about Zachary’s Mission, visit ZacharysMission.org.

While I was pregnant with Judah, I took every precaution and made sure to take very good care of both of us. But if your child is born with a Congenital Heart Defect, chances are there was nothing you could do to either cause or prevent this #1 birth defect.

CHDs affect 1 in 100 births. That means the last time you went to see a movie, someone in that room had a child with a Congenital Heart Defect.

Congenital heart defects are the #1 cause of birth defect related deaths. CHDs 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 CHD. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.*

*From Children’sHeartFoundation.org Fact Sheets

Judah’s specific condition, Truncus Arteriosus, requires an open-heart surgery within days of his birth, and he also hit a number of complications – including a cardiac arrest when he was just two months old. Even now he requires 24 hour trained medical care.

Judah was hospitalized until he was 7 months old.  With the support of organizations like Zachary’s Mission, our family was able to continue to fight our battle, and become the CHD Warriors we are today.

We are overjoyed to tell you that, now two years old, Judah is a happy, smart and silly toddler with endless energy and a powerful will to play and learn! With good support, Heart Warriors like Judah can win any battle they face.

Judah’s intelligence, will, and great sense of humor will take him far. Thanks to lifesaving research, medical technology, and organizations like Zachary’s Mission.

Congenital Heart Defects affect 1 in 100 births, yet most people are unaware of these life-threatening diseases.  The term “Congenital Heart Defect” is a blanket description that encompasses hundreds of diseases of the heart, from murmurs and tears to massive structural defects like Hypoplastic Left Heart Syndrome (HLHS) and Truncus Arteriosus.

While our son was hospitalized, organizations like Zachary’s Mission came to our aid. Zachary’s Mission was founded by Patricia Vince, herself a Mom of a Congenital Heart Defect Warrior – Zachary. Zachary’s disease ultimately claimed his life and Patricia honors his memory by helping Heart Families continue to fight their battles.

Unless you are a part of a Heart Family, it’s difficult to understand the intensive journey it is to cope with a Congenital Heart Defect. That’s why awareness of CHDs and organizations like Zachary’s Mission are so important. So many families are dealing with this literally heartbreaking disease.

We asked Jessica a series of interview question:

Tell us how you learned of your/ your child’s/ family members condition and how old they were.

My son was less than 24 hours old when our incredibly thoughtful and talented nurse (she is now a part of our family!) discovered his murmur. In a matter of hours he was taken to Children’s Hospital of Pittsburgh, where his first Open Heart Surgery was performed when he was nine days old.

What has the most difficult thing in parenting your child with their condition?

It is very difficult knowing that he will have more open heart surgeries – and they could be as soon as this year, or they could be 10 years from now. That is never easy.

What has the most difficult thing you had with living with this condition?

It’s hard to worry so much! Between his trach, meds and his heart, exposure to any illness like a cold or a flu could be a trip to the ICU! I try very hard to let him run and play with other kids – to go do fun things in the world. But I always have to be very vigilant about exposure.

Tell us about daily life for you and your family with your child’s chronic illness, medical condition or special needs.

Judah needs a trained set of eyes on him 24 hours a day. Because he’s trached, his airway is compromised. So if the trach were to become plugged or to come out, he cannot breathe. So anyone caring for him needs to be able to handle his trach in an emergency situation.

He has vital meds every few hours, given through his g-tube. He is fed 100% of his meals via g-tube as well. I make him a special “blended diet” every day – so he has excellent nutrition!

Judah usually has a few doctor’s appointments through the week, as well as therapists who come to work with him to help him to use sign language (he cannot vocalize because of his trach), and to try to help him to learn to eat by mouth.

He is a glorious little goofball who charms everyone who meets him. He’s incredibly smart and expressive, and has a wonderful sense of humor.

Every day is a joy.

Tell us at least 3 tips, strategies or skills that help you and your family on a daily basis overcome issues and stressors.

1.    Take time to take care of yourself. At least once a week, do something good for yourself. (Though really, everybody should do this!!!)

2.    Eat well. And by that I mean, healthful whole foods. It’s amazing how much better you feel and think when you’re eating your fruits and veggies!

3.    Music! We always have music playing, we go to a parent-toddler music class, and I go to religious services once a week to sing and be grateful. Music is incredibly therapeutic. 

Tell us an inspiring story about your child on how they have overcome an obstacle at home, within the community or at school.

That day, I had intended to go home to get some rest, but I could tell Judah was not well, so I stayed with him in the CICU. At about 2am, a nurse came in to do some routine checks on his vitals and his heart just stopped. Just stopped.

I remember every alarm going off, and immediately every doctor and nurse was running to his aid. He was just blue and shaking. Someone took me by the arm and sat me in the waiting room. I frantically called my husband and just tried to understand what was happening. 45 minutes passed before anyone came out to tell me what was going on.

He survived. It took 45 minutes to revive him, but he survived. The nurses prepared us for the worst - saying that because his brain was deprived of oxygen for so long, there would be no way that he would be “ok” after that. 

But amazingly enough, after 5 days on ECMO, an MRI revealed his brain function was completely normal. Today, at 25 months, he even knows his alphabet, is running and climbing and can sign over 50 words. 

Judah is the most determined individual I have ever met. When he wants (or doesn’t want!) anything, he makes it happen! I’m absolutely positive that most of his progress and health is his own determination to feel better. He is that strong willed. 

I continue to learn so much from his positivity and determination every day. And he’s only two! I can’t wait to see what he does next.

Where do you go for support?

Our family, on both my husband and my side are so involved and supportive. We also have a new family in other CHD Warriors we have met on this crazy journey, and the wonderful group at my congregation that has prayed with us since Judah’s birth. We couldn’t do it without any of them.

We’ve also been helped by various nonprofit organizations that exist for the sole purpose of assisting families of hospitalized children. Organizations like Zachary’s Mission find multiple important ways to ease the strain. 

What keeps you, your child and your family moving forward?

Hope! Love! Like most people who tell about near-death experiences, we often feel that we have been given an amazing second chance. We are so grateful for every day we have - every moment with Judah is so important. He is a wonder, and it makes everything we do that much more special.

What do you wish you would have known before this journey?

CHDs are the most common birth defect and can be discovered at the 20 week ultrasound. There are many invasive tests to determine other kinds of birth defects, but I had no idea how common CHDs are. I truly wish I would have known more about this possibility, and what happens for children born with CHDs. I was very educated about my pregnancy and how to care for my new baby - and yet I was completely unprepared for and uneducated about CHDs.

How are you/ your child/ your family member doing today?

We’re great! We do know that Judah will be trached for significantly longer than we expected, and that he may be headed for another Open Heart Surgery within the year. But he is a smart and funny toddler who can’t be stopped!

Does your spouse or other family members have anything to share in the article?

Nate and I share everything! Daddy (Nate) is the “Trunk” of our tree – I’m just the loudmouth! My husband writes all the updates on Judah’s blog at JudahK.com, and has really entrusted me as our “SpokesMom”. All of our family supports us every day.

Do you participate in any fundraising activities or events for their condition?

There are many galas and events and organizations we love to support - for Congenital Heart Defects, for hospitalized children and their families.

We love Zachary’s Mission, which has a yearly gala – usually in November 2015 and The Children’s Home of Pittsburgh and Lemieux Family Center – theirs will be at the end of March in 2015. Both of these organizations do so much to care for critically ill children and their families. 

In addition, HospitalMom.org is comprehensive listing of events, organizations and more to help families of hospitalized children.

Thank you Zachary's Mission and the Kaushansky Family for sharing your incredible story and helping other understand CHD, sharing resources available and being an inspirations to others!

 Clicks for a Cause also supports the Pittsburgh Heart Walk and many other amazing non profits. Check out our facebook and website for ways we can support you in 2015.