CHD Awareness Week

Once again it is CHD (Congenital Heart Defect) Awareness Week .  I love taking the time each year to reflect back on Allyson's Heart journey.  Here is last year's post.  

Allyson's CHD is not something that I think about every day, and for that I am so very thankful because it means we don't have to worry or think about her heart defect.  She is a strong, healthy, and very active girl.  A girl who has a mended heart.  

Reflecting helps me appreciate how far we have come when I look back on my little 8 month old girl having open heart surgery.  I still get teary eyed looking at pictures of her in the hospital and remembering the heart wrenching moments walking away from the OR with empty arms, the hours of waiting while she was in surgery, and seeing my sweet baby girl post surgery.  It was a very hard time for me and for our whole family, but I have grown so much because of this experience.  

I love that Allyson talks about her "heart doctor" even though she can barely remember her last check up with Dr. Bose.  It makes me even happier to know that she doesn't have to go back for a checkup until she is 7 years old.  What a change from the monthly checkups before and after her surgery.

While Allyson was in the NICU at Queen of the Valley Hospital she was diagnosed with a heart murmur.  The murmur was so loud that we didn't need a stethoscope to hear the added "swish" to her heartbeat.  After more testing it was determined that Allyson had a Ventricular Septal Defect, often referred to as a VSD.  A VSD is one of the most common, most treatable, heart defects.  We spent many doctor visits watching her heart hard at work and watching a small flap of tissue waving back and forth with the blood flow.  A flap of tissue that should not have been there, instead it should have been a solid wall of tissue separating the left and right ventricle.  Thankfully Allyson never had to endure the side effects that accompany most CHDs.  I never had to see her lips turn purple or blue and she was able to nurse without any difficulty.   You can read more about Ventricular Septal Defects here.

This was the first time I got to hold her after the surgery.  It was the morning after surgery while she was still under a heavy dose of morphine.  I remember being able to see her shortly after surgery but not being able to hold her.  She was asleep with the aid of some very strong drugs, she was just resting and there was nothing we could do.  I didn't want to leave her side.  After much encouragement from Allyson's nurse Steve and I headed to the hotel to get some much needed rest.  Even as exhausted as I was I couldn't wait to get back to the hospital in the morning and see my baby girl.

I am so very happy that both Eva and Colton were given a pulse ox test prior to us taking them home after they were born.  It is a wonderfully simple, non invasive test, that can help doctors recognize a possible CHD in babies.  

My happy chubby cheeked little girl in recovery.  When Dr. Bose was explaining what would happen during the surgery and how long the recovery would take I did not believe him that we would walk out of the hospital 5 days after Allyson had open heart surgery only needing baby tylenol for the pain.  The thought of Allyson healing that quickly was so hard for me to fathom I didn't believe it (obviously I knew so much more than our pediatric cardiologist).  Babies are so resilient and strong, it is amazing to watch their bodies heal themselves so quickly.

Just a few weeks ago Allyson had Mr. Spiker as a substitute in school.  He is a member of our Ward and has known Allyson since birth.  When I picked her up from school that day he told me how wonderful it was to watch her running around on the playground knowing the health trials she started this life with.  His comment took a moment to sink in and I realized that most days I take her health for granted.  When I stop and think about her heart journey I am truly amazed at the healthy 5 year old girl I have.  We are so blessed to have our sweet, sensitive, and loving Allyson in our family.  I hope that the more she learns about her heart journey she will learn how very blessed she is, and how her mended heart has made her stronger.