Echo, Echo & more Echos

Heart defects seam to run in our family. Jacob who has Transposition of the Great Arteries (TGA) & his cousin Alec who has Tetrology of Fellot & Double Outlet Right Ventricle (TOF, DORV and a pacemaker) have serious CHDs. There are other relatives that have heart issues.

Earlier this year my younger sister, who has a heart murmur, had a couple of Echocardiograms looking for a hole in her heart. The doctors thought an ASD or PFO might be the cause of her migraines.

I have had migraines for years too. So in May I went and got an Echo too. With our family history, I had multiple doctors telling me I needed one to make sure. Thankfully all looked well.

Last month Jacob's oldest sister had pneumonia with a cough that lasted over 3 weeks. We did a round of antibiotics but the cough was still there. Her Pediatrician sent her for a chest x-ray. Her lungs looked clear but the Radiologist (who had no idea of our family history) noted that it looked like she has Pulmonary Stenosis (PS). WHAT??? Are you kidding me? This is supposed to be my healthy child.

A few days later we were siting in the waiting room of the pediatric cardiologist. She got a complete work-up with an ECG and Echo.

Electrocardiogram (EKG/ECG):


Echocardiogram:


The Cardiologist did say that the x-ray really did look like she has PS, but thankfully everything came back looking, sounding and measuring normal. Our sweet daughter has a healthy heart. So it was just some shadow or something on the x-ray that appeared to be a problem. Whew! I had 3 migraines waiting for her appointment.

Yesterday my other younger sister had an appointment with a pediatric cardiologist in California to have Echos on her two children (Jacob's other cousins on my side). Both have healthy hearts. Cousin Alec also had an Echo yesterday.

My family: eight Echos so far this year.
Any one else want an Echo? Oh ya, Jacob's Echo is next week.

When I asked my daughter what here favorite part of the cardiology appointment was she said:
"When the doctor said there was nothing wrong with my heart."
I agree sweet girl, that was my favorite part too.

Summer Heart Events

We have had a fun summer with Family Heart Camp and the Walk for Healing Hearts (we missed the Summer Picnic due to illness). Last night we went to the Red Barn at Southridge Farms in Santaquin for another IHH event. So much fun! We feel fortunate to associate with other heart families.

Today was flu shot day for the children (I got mine last month) and tomorrow will be H1N1 flu shots. We are hoping for a healthy winter.

Jacob has his big cardiology appointment in two weeks. Thanks for keeping us in your prayers.

Here are some photos of what we have been up to...

Heart Walk Group Photo:


Butterflies released by the Angel families:


The IHH Board of Directors:


Jacob at the Walk with his face painted:


Random cute picture of Jacob:


I didn't take photos at Heart Camp but a friend posted some great ones here.

Jacob's Heart Buddy

Aren't these boys so handsome. Jacob and Alex were born a couple of days apart and spent time together in the PICU. Alex also has a heart defect, HLHS. They were the first other heart family that we talked to at the hospital. I am so glad that we have been able to spend time with their family outside of the hospital too. These pictures were after a fun afternoon of playing at the park. We love you and your family Alex!

CHD Video

Here is a wonderful video montage of over 100 CHD survivors. This is put together by Paul Cardall who is awaiting a heart transplant. Jacob and his cousin Alec are seen at 4:59 minutes.

Poison Control & the ER

We had an exciting afternoon yesterday. Jacob was playing with his sisters when he got a hold of the remote control. He took the back cover off and decided it would be fun to try and eat the batteries. His older sister pulled one AAA battery out of his mouth and came and got me. We had talked last week about how batteries are dangerous if swallowed (ya, do you think we had been prepared for this event). We searched all over for the other battery and could not find it. Jacob was crying. I looked up online about what to do and how dangerous ingested batteries are. Then I called the Poison Control. The guy on the phone was really nice but made it clear that we needed to get Jacob to the Emergency Room for x-rays and treatment ASAP.



After a phone call to Dad and Grandma to meet us there we were on our way. When we got to the ER and I told the receptionist I thought my son might have swallowed a battery she asked “Is this Jacob?” Poison Control had called ahead to let them know we were coming. I thought that was pretty cool. Jacob's oxygen sats were about 95 (a little lower than normal). My husband arrived and sat with the girls until Grandma got there and took them home (thanks Mom!).

Jacob had two x-rays. I got to stand next to him in the radiology room. Jacob did so good laying still just like the tech wanted him to. Good job buddy! The tech said he didn't see anything. Here is the clear x-ray...



We still got to wait almost an hour for the doctor. It is difficult to entertain a two year old for that long with only a bracelet and a cell phone. We did have a neighbor working there at the time so he came over and checked on us which was nice. The doctor came in and asked “What is the best news I could give you?” I said “no battery”. So yep Jacob really hadn't swallowed it after all, thank goodness. After getting home Grandma had found the battery hiding so we really know for sure.



So that was our exciting adventure for the day. I ended up with a migraine but we also went out for dinner so that was nice. Hopefully no other ER trips anytime soon.

TWO Years Old!

Jacob is now two years old! We had a good time celebrating his birthday. He has been learning so many new things.


He loves playing with cars and animals. He is very much a typical boy. Jacob is also starting to talk a lot more.


His next cardiology appointment is in October. I am looking forward to the echocardiogram and seeing that things are growing normal.

This is a picture of my silly boy Jacob (with Grandma) when he got into the red sharpie markers...


In the last month or so I have been able to email and talk on the phone with a number of other parents who also have children with Transposition. Some have newer babies or are still pregnant. I have enjoyed sharing Jacob's story and hope that it is helpful for other parents to connect with a Heart Mom.

Croup Again

I know that I still need to post about Jacob's 2nd birthday and all that is going on, but we have had a crazy busy few weeks!

As the title suggests, Jacob is sick with croup again. Since we stayed in last winter so Jacob would not get RSV and end up hospitalized, he has been catching every illness this winter. This is our third time with croup (besides all the other illnesses he has had). Poor Jacob has had a fever for the last three days.

In January when he last had croup I got freaked out a little. Jacob has a soft murmur from his switch operation. When we took him in the nurse practitioner at the pediatricians said he had a loud pronounced murmur. We had been told from cardiology that if something goes wrong with his heart the murmur can get louder. So I was totally worried. After a call to the cardiology department a nurse told me that murmurs can sound louder when the kids are dehydrated or have elevated heart rates. I told her I was still learning about when to worry and when not to!

I am so looking forward to the warmer weather and healthy kids!

18 month Cardiology Visit

Today was Jacob's annual cardiology appointment. The doctor said that he looks great! They did a chest x-ray and an EKG and both came back looking normal (no echocardiogram this year). We are so thrilled. Doctor Etheridge said we can let him go to church this winter (as long as no one in nursery is sick) and that he should be able to fight RSV and other illnesses like a non-CHD child his age. Woo hoo! Also Jacob has been authorized to go to Disneyland and ride anything that is age appropriate! So fun for him and us.

A few weeks ago we were reading through the surgical report from Jacob's open heart surgery. In there they noted that they closed an Atrial Septal Defect (ASD) during the surgery. What??? We had totally missed that information. The medicine they were giving him kept that hole open so oxygenated blood could mix and then during surgery they have to close that off. So it may or may not have been a true ASD. Either way it is fixed and will not be a future concern.

His next cardiology appointment will be in a year when they will do the echo and see how things are growing in there. One thing that they will be watching is the pulmonary artery as it is slightly enlarged at the base where it goes into the heart. If it enlarges too much it can cause thinning and there would be a concern of it rupturing. We are not even close to that point, but it is something they will have to keep an eye on as he grows.

Jacob is very active. He loves to climb, look at books, run around the house, knock on doors he wants opened (even the refrigerator) and make car sounds when playing. It is so fun seeing the difference in how a boy behaves after having two girls.

One thing I have been wanting to post is some of the x-ray photos of Jacob. This is two days after his Arterial Switch operation. You can see the chest tubes, pacemaker wires, feeding tube, breathing tube, and wires holding his sternum closed.

This other x-ray is a profile when he was 3 weeks post-op showing the sternum wires again.

Thanks for all the love and support you all show our little family!

Fun Run/Walk

I just wanted to write a little about the Intermountain Healing Hearts Fun Run/Walk from last weekend. We had an amazing turn out with almost 300 people participating! It was so great to see all these people gathering to support family and friends effected by congenital heart defects. I especially loved the short program after the run to remember those angels who had left this life due to their heart conditions. I am so glad our family and friends were able to participate. Thanks everyone!!! I forgot my camera so here are some photos I "borrowed" from friends blogs...

Some of the participants

More participants

18 of the CHD Survivors (some had to leave before this picture was taken)

Jacob is the one in the front row trying to run away...

Another view of the CHD group (I am holding Jacob up in the back row)

5 of these CHDers live in my neighborhood

IHH Board of Directors: Carolyn, Mike, Me, & Brynn (not pictured: Kristen)

Jacob's next cardiology follow up is a month away. We are expecting a good report as he appears to be doing so well...

Transposition Survivor

Last weekend we traveled to California for my sister's wedding. During the reception a family friend came up to talk to us and introduced her husband who was born with a heart defect. He said "I am a Transposition survivor".

When LJ was born with Tranposition of the Great Arteries (TGA - just like Jacob) his parents were told to take him home to die. Luckily he survived until he was one year old (due to a procedure that created a whole in his heart allowing some oxygenated blood to mix). At one year old he was big enough to have open heart surgery. LJ is now 35 years old!

As we talked I just started crying. What a blessing it was to see him as an adult. Hearing his story was truly an inspiration to me. He gave me some advice about parenting a child with a heart defect and talked to me about things I had worried about.

Thanks LJ for giving me a glimpse into my son's bright future...

Two Transposition Survivors!!!