Saturday, January 28, 2012

Our Experience with CHD

Our Story:

Tanner was born February 3, 2011. As far as we knew prenatally, he was perfectly healthy. After his birth he was still a perfectly healthy baby.

The day we were supposed to be discharged from the hospital and go home with our healthy baby was a day I will never forget.

Our pediatrician came to us in the hospital and told us that he could not feel his femoral pulses (in his legs), and was worried that it might mean something.

So we went to the NICU to have tests done and it confirmed that there was something horribly wrong with our baby's heart.

We were life flighted to Primary Children's Hospital in Salt Lake City, Utah where they performed more tests and found four different issues with his little heart.

1. Coarctation of the Aorta: Part of his aortic arch had a pinch in it that did not allow enough circulation. Later on, we found that it was not just a pinch but a bigger part of the aortic arch was very narrow.

2. and 3. ASD (Atrial Septal Defect) and VSD (Ventricular Septal Defect): Holes in the septum of his heart. The septum is the wall that separates the right side from the left side of the heart. He had a hole in both the upper and lower chambers of the heart which allowed blood mixture between oxygenated and non-oxygenated blood.

4. Subvalvular Stenosis (also called Sub-aortic Stenosis (SAS)): Ok, this one is hard to explain... it is one of the parts of the wall of his heart where one of the holes are, grew to the side and created a "flap." This flap was now almost blocking the aortic valve and needed to be removed or stitched back so that valve could get circulation and grow.
We ended up being life flighted to the Children's Hospital of Los Angeles to have the surgery done at 7 days old. We were lucky that he has only needed to have one surgery and hopefully no future ones (knock on wood).

This whole terrifying ordeal lasted about 3 weeks (not to mention all the doctor appointments afterward and for the rest of his life). We got home from LA the day before he turned 3 weeks old and we finally had our newborn baby in our own house.

Tanner is now a thriving healthy boy. It almost seems like he never had a problem with his heart at all. I am so happy that he is doing so well, but there is always the elephant in the room in the back of my brain that will always be stressing and wondering if something else will happen as he grows.

Our experience with Tanner's CHD (Congenital Heart Defect/Disorder) was the most petrifying experience of our lives. Another heart mom said this one day and I just love it. She said that she never thought about heart defects or wanted to be a part of the CHD world before our child was born. But now that he is here we would not change our experience for anything.

There is a CHD board on Pinterest that has many more stories of other children and adults that have been affected by CHD. You can read their stories here.

Help spread awareness for CHD week! February 7th - 14th!

Friday, January 27, 2012


Since the 1 year mark is coming up on Tanner's birth (woo hoo!) and also his surgery and hospital stays, I have been thinking and remembering more and more things that I did not include in this blog.

I am very happy that I am remembering some things and never want to forget them. There were so many things that happened both happy and sad in that time that I want to remember. We were told so many different and new things in such a short amount of time my brain was mush and could not get anything back out of my brain during that time. I want to have a record of what I can still remember before any of it becomes more dim than it already is.

I am going to be updating the blog with these little tid bits around the dates that they actually happened. I will put the actual date of when I wrote the post somewhere in there and also label them "after thought" so I, and also others will be able to tell a difference between in the moment posts and after the fact posts.
Wish me luck in remembering things!

Monday, January 23, 2012

Sunday, January 22, 2012

Heart Momma Dinner at Zupas

I was able to go to a dinner that a bunch of heart moms had put together so we could meet, get a break and talk. It was not an official IHH event, but we were able to get many of us together nonetheless.

If my thinking is correct, I want to say there were probably about 25-30 of us there. Some of them had already left before we thought to get a group picture together, so some of them are MIA. Sorry!

It was so nice to be able to finally meet these beautiful women. Most of them were "heart moms" like me. In which they also have a child or children with a CHD. Some of them have angels that are no longer with us. There are also "heart kids/adults." One came that was a heart kid herself and one of her children also has a CHD.

It was very informing to be able to speak with these ladies about their children and what they have gone through, and have yet to go though. The strength within these women was palpable and extended to each one even more.

I am so excited that I was finally able to meet some of these women. I look forward to many more activities that we are going to be doing together, and for the love and support I already feel from them.

Tuesday, January 3, 2012

11 Months Old

 This has got to stop. The growing thing.
 But not really.

 I am loving every moment of this!