Happy Congenital Heart Defects Awareness Day!

I know it’s Valentine’s Day for most people, but we celebrate Congenital Heart Defects Awareness Day at our house as well.  It’s the end of Congenital Heart Defects Awareness Week, which started on February 7.  Congenital Heart Defects strikes 1 in 100 babies.  That’s about 40,000 babies every year.  We have two in our household.  Colman with Hypoplastic Left Heart Syndrome (more defects than I could count) and Rowan with his bicuspid aortic valve.

Rowan’s defect is a very common defect for siblings of a child with HLHS to present with. Most people who have a bicuspid aortic valve never even know they have one.  The only reason we know about Rowan’s valve is I insisted that the fetal echo specialist come and echo Rowan after birth to make sure his heart was healthy.  We see the pediatric cardiologist once every two years to check the sufficiency of Rowan’s valve, and it should not cause him any problems until he is somewhere in his sixties.  Thankfully, I will probably be dead by then.

Colman and I celebrated with an appointment at the Hem/Onc Clinic this morning and a blood draw.  Not much to report because we haven’t gotten the numbers back yet.  Then we stopped by Taco Cabana on the way back to school to get a bean and cheese taco, which is his favorite.  He was back in plenty of time for his Valentine’s Party this afternoon.

Colman has an appointment in Houston at Texas Children’s Hospital on Tuesday, February 19.  It will be another long day with an echo, EKG and doctor visit.  I hope that the echo will show that the thrombus that was in his left ventricle is completely resolved.  If it is gone, we can start to discuss taking him off the Lovenox injections.

Next week is going to be crazy.  Kevin will be out of town trying a case, so Liam will be staying with a friend Monday night so as not to miss school on Tuesday.  I will drive Rowan to my parents’ house in Victoria and they will keep him Monday night.  Then Colman and I will go on to Houston and spend the night so we can be at TCH bright and early for our appointment on Tuesday.

A huge thank you to everyone who is helping me out!

Our pediatric cardiologist here in San Antonio wants to do another heart catheterization to check Colman’s pulmonary pressures since he has been on the Sildenafil.  We will discuss whether TCH wants to do one as well, and, if so, where we will have it done.  There is only one way to check pulmonary pressures and that’s through a heart cath.

Colman seems to be doing really well lately.  He is back to his playful self.  Although he gets tired more easily now, I feel like he’s in a really good place compared to where we were this past summer.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s