Monday, February 7, 2011

Makes My Monday: Modern Technology Saves Lives

Lily..sporting the notorious NG tube...a few weeks before surgery

It's that time again....CHD Awareness Week....I am spreading awareness by sharing our story

What is a congenital heart defect?

Congenital means it is present at birth. Heart defects begin in the early stages of pregnancy when the baby's heart is forming.

Approximately 40,000 babies are born each year in the United States with a CHD. That equates to 1 out of 125 babies born with a heart defect. There are approximately 35 different types of congenital heart defects.


A Ventricular Septal Defect (VSD) is a hole in the ventricular septum - the muscular wall that separates the right and left ventricles, or main pumping chambers, of the heart.

This opening allows the movement, or "shunting," of blood between the ventricles. Most commonly, oxygenated blood from the left ventricle enters the right ventricle because there is greater pressure in the left ventricle and the resistance in the lungs is significantly lower than in the body tissues. This is known as a "left to right shunt."

Ventricular septal defects are the most common forms of congenital heart disease, accounting for 21% of all cases. They may be single or multiple and may occur in different parts of the ventricular septum.

Small holes usually close spontaneously in the first year or two of life. Large holes almost always require surgical closure in the first year of life. VSDs may be present with other heart defects.

My daughter, Lily, was diagnosed with a Ventricular Septal Defect at 7 weeks old. I was that parent...the one sitting with her mouth open listening to the daughter and thinking "no, not my daughter!" I was in shock that MY daughter had a hole in her heart which could result in open heart surgery. After Lily was first diagnosed, the days seemed to blend together. It seemed like every other day, we were off to see a doctor. We had weight checks at the very least once a week which later resulted in an NG tube being inserted in Lily's nose to "force feed" her the calories that she needed. It took everything in her little bottle to work at taking 1 oz from her bottle at each feeding. The NG tube fed her continuously helping her to gain 2 lbs before her open heart surgery. Lily had only gained 15 oz from birth to 7 weeks old. Her little body was burning calories faster than she could take them in.

The size of Lily's hole was considered medium to large (we found out later it was 11 mm...Large)

Larger holes may interfere with a child's feeding and growth and may cause rapid breathing, irritability, excessive sweating, and poor weight gain. The vessels which carry blood from the heart to the lungs and back again may become congested, or overloaded, with blood, resulting in congestive heart failure (CHF). This usually occurs when the child is 6 to 8 weeks old.

Lily was put on 2 to reduce the volume of the fluid in her lungs making it easier for her to breathe and eat...Lasix. And another to increase the squeeze (contraction) of the heart muscle and helps it function more effectively...Digoxin.

Due to Lily's slow growth, open heart surgery was required to patch the large hole. After surgery, the change was drastic! Lily had an appetite. She pulled her own feeding tube out and practically inhaled her 1st bottle. It was like seeing your child round the last corner in the big race...she was running under the finish line with arms raised "I DID IT!!!"

Seeing our little fighter for the 1st time on the way up to PICU surgery

I never knew anything about Congenital Heart Defects. I thought that heart conditions only affected adults...mainly women...because that is all the I would see on advertisements from the American Heart Association. I would see "wear Red for Women!" "Heart Month", etc.

Congenital Heart Defects not only effect the child but also the family around them. Your life is put on hold, everything changes. Washing hands becomes a MUST. Kids with CHDs have low immune system, and a simple cold and turn into something worse in the blink of an eye.

I know some of this may bore you...but spreading awareness is sharing facts and personal stories.

Help me spread awareness...not just for Lily...but all the kids out there (Addison, TJ, Lilyana, Max, Aurelia, Zoie, and Jacob)... and for the ones who didn't make it to see their 1st birthdays...Angel Sammy and Angel Andrew...I spread awareness for YOU! ♥

Lilyann...almost 3 years post surgery

*linking up with Cheryl from Twinfatuation for Makes My Monday...and spreading awareness for CHD Awareness Week 2011


Amy said...

Thank you for sharing. My twins had RSV when they were just weeks old resulting in intubation and an NG tube. Those few weeks were absolutely horrible, but I can't imagine how difficult something like this must have been. It's so good to see her so big and strong looking!She looks like an adorable happy child. Enjoy her. Thanks for commenting on my blog!

Cheryl Lage said...

Go Lilyann, and GO MAMA! What a tale, and so good for you to share your story and increase awareness.

Her bouncy, healthy self---and YOU---Make My Monday.

Thank you so much for playing along.

Marissa said...

what a powerful story! AMAZED by her strength :)

What a beautiful girl! Blessings to you and I would love to help spread awareness since heart disease is VERY close to my family as well :)