LLJ Heart Month

Oh my sweet Lake Louise.

This month is American Heart Month.

As a girl I loved the symbol of the heart.

The HEART always had a meaning of love and life in my mind.

I have been doodling hearts since I was a kiddo (like most of us chickadees) and even now-a-days.

The heart … is beautiful.
The drawing of a heart is romantic and a way we show LOVE in a symbol.

Well, the heart means more than just love and life to me now.

That symbol not only represents love and life to me, it represents my sweet Lake.

Lake Louise, born on April 23 nearly two years ago with a severe congintal heart defect.

Her paritcular defect is called “Ebstein’s Anomaly.” 1 in 10,000 babes are born with her defect, but there is quite a severity spectrum.

She wasn’t so severe that she died in utero or just after birth, but she was quite severe.

A baby that most likely would not have lived even 20 years ago.

Lake was ventilated right after she was born.

She had her first open heart surgery (the Starnes procedure) at 2 days old.

She recovered in the NICU for 70 days (also enduring a stroke within the first couple of weeks of life).

Finally she came home, but nearly 70 days later she was back in the hospital for her second surgery (the Glenn).

Almost a year later Lake went in for her third surgery. Our surgeon (brilliant brilliant Dr. Tam) did not recommend the typical third surgery (Fontan).

He did a procedure where he rebuilt her tricuspid valve and allowed her right ventricle to work (a one and a half)! You see the other surgery shuts down the right ventricle all together and they are seeing the negative side effects on the kiddos who are now living with single ventricle hearts – their livers are being damaged, failing, and may have tumors on them from the abnormal pressures from the heart circulation.

Lake’s third procedure has brought us a whole new girl! She has been happier, more playful, less serious, more active and recently was dismissed from ECI because she is nearly “on target” for all of her motor, connive and speech skills! She will be two this year and the heart now represents love, life, faith, gratitude, grace, miracles, and complete adoration.

The HEART is amazing, but the hearts of our sweet babies are delicate and fragile.

More and more are being diagnosed with CHDs by the year!

Read some of the latest statistics about today’s babies:

• 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.
• Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.
• 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.
• Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
• In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

I am sure you know someone who has a heart baby, because 1 in 100 makes it a lot more common. I had a couple of friends give birth to heart babies last year and one is awaiting their heart journey. Her son will be born soon with a CHD that requires some serious surgeries. It’s a scary road for the heart families, but luckily medical advancements are helping treat these sweet children and now many of them are actually living to be adults! My hope is that we start to uncover WHY these heart babies are being born and how we can prevent these defects.

Now to share my heart with you… our sweet Lake, from this week.

Happy Heart Month friends – may you find a new meaning to the word “HEART!”

May preventions and cures be found soon!