CHD Awareness Week

The week of February 7-14 is Congenital Heart Defect Awareness Week. Every year the heart community spends this week sharing facts, stories, awareness and encouragement. While I will share with my readers that 1 out of 125 children is born with a congenital heart defect and that approximately 40,000 babies are born with CHD in the US each year, I think that most people who read this blog are already aware of these facts, because we are living with CHD everyday. We have all experienced that one terrible day, the day we found out that our children were not perfectly healthy and would require surgical intervention if they hoped to have a life with us. We have spent many nights in the hospital as our children’s little bodies worked hard to recover, we have spent so many days in doctor’s offices, or on the phone advocating for our little ones. We fight the insurance companies, we push to be heard, and we do it all for the love of our precious kids.

This week typically gets me down. Partly because right in the middle of CHD Awareness Week is Drew’s birthday. And with his birthday comes the memories of the most difficult time of my life, the week between his birth and his first open-heart surgery. During this week it seems I can not escape the stories of diagnosis, surgeries, complications and how many children don’t survive their CHD. All in the name of awareness, but I sometimes think I am too aware. It brings those feelings right back to the surface, in full force. But, this year was better. I had a few moments on Drew’s birthday, but made it through the rest of the week without letting those feelings get a foothold.

Instead of dwelling on the tragedy of CHDs, I am trying to focus on how I can make a difference. Earlier this week our support group, Hearts of Hope, put together baskets full of delicious treats to say thank you to the cardiologists, surgeons and nurses who take such good care of our children. Our family delivered the baskets to UC Davis on Wednesday and it was fun to see how excited they were to receive them.



We are also organizing a care package donation drive to collect items for our care packages that go out to families who have children recovering from heart surgery in our community. If you are able to donate any of the following items, please contact me and I will arrange a pick-up. {toothbrushes (in individual packages), dental floss, travel size shampoo & conditioner, deodorant, mouthwash, hand lotion, small hand sanitizer, pocket combs, pens, small non-perishable snacks}

Today we are continuing with our family tradition of bringing balloons to all the children in the hospital at UC Davis. My minivan is packed with 100 red heart balloons and we will be delivering them to the kids later today. We are also bringing thank you treats for the nurses and crafts to do with the kids in the playroom.

Last night we attended the Camp Taylor Fundraiser Dinner. What a night! We had the best time and loved the silent and live auctions. There were some tears though, listening to the kids talk about their lives and how much attending camp has made a difference to them was emotional! These kids are absolutely amazing. I’m glad that we could help this organization.


I am curious about what everyone else is doing this week. Leave me a comment and share how you spend CHD Awareness Week.

California State Fair 2009

Hearts of Hope gets free tickets for the California State Fair every summer and we were lucky enough to be able to go once again this year. We only had a few hours free between school and soccer practice, but with temperatures well over 100 degrees that was plenty of time to go on some rides, see some animals, and eat some fair food before heading back indoors to the air conditioning.

We spent most of our time in the Kids Zone and I was surprised at how many rides the kids wanted to try. Drew even went down the giant slide with me. They liked most of the rides, but I convinced them to try the jolly roger and lets just say...we won't be doing that again.

After the rides we headed across the fairgrounds to see the animals. On the way there we passed the "everything fried" booth and I just had to try the deep fried s'more. It was pretty good, but very very sweet! But hey, when in Rome...Anyway, once we got over there we got to see all the baby animals including baby pigs that were born that morning. So cute! Then we passed through the insect and reptile house, grabbed our free M&Ms ice cream sandwich, and hurried out of the fair and off to soccer practice!

My cuties on the boat ride

Jolly Roger-not a hit!

Mmm...deep fried s'more!

The kids with a baby cow

Ava petting a snake

Drew holding a snake

Hot and tired kids grabbing our ice cream sandwiches on the way out

HOH Summer Fun

Another fun event especially for heart kids and their families was the Hearts of Hope End of Summer Party at Funderland. We had lots of families in attendance and the kids enjoyed unlimited rides, pizza, and snow cones, along with goody bags stuffed with toys and treats and T-shirts with the new Hearts of Hope logo. We also had several local pediatric cardiologists and surgeons in attendance with their families. It was a great time to get together and talk and let our kids have fun with each other. It's always nice to see the connections that these families make with one another.

Funderland closed their doors to the public and had a private party just for our group. Drew spent the majority of his time on the car ride and hanging out with his heart buddy Casey. They both also hung out with Dinger, the Rivercats mascot. Ava had more variety in her choice of rides and did a little bit of everything. If I had to guess I would say Dan most enjoyed the pizza (it's his favorite!) and I really enjoyed visiting with the other Heart Moms. Thank you Hearts of Hope for another fun event for our family!

Drew and Casey on the car ride

Drew and Casey on the log ride

Dinger, Casey and Drew

Ava and Mommy on the roller coaster

Heart Walk 2009

This year's heart walk was a total success!

We were able to raise $2735!! How amazing is that?! Thank you to everyone who made a donation to the American Heart Association on our behalf. Because of your generosity we were the number one individual fundraiser for Sacramento! You guys are awesome!

No one was sick this year, I was able to run the 5k (the first time since we've been doing this walk), and Dan and the kids walked the entire one-mile loop with no stroller. We even had Grandma Kathy join us this year. The weather was perfect, warm but not too hot. We met up with lots of our Hearts of Hope friends in the VIP tent afterward. Of course Drew and Ava had to spend some quality time in the bounce house and walking around collecting samples, trinkets and paperwork from the various booths.

After the after-walk festivities we headed off to Fairy Tale Town for the UCD pediatric heart surgery reunion. The kids got to play and the generous folks from UCD provided a delicious bbq lunch for us. I got to meet a new heart mom with a little one with HLHS and reunite with a family that we met when Drew was in the NICU. What an amazing day...There is nothing like seeing a bunch of heart kids running around without a care in the world.

We all had signs saying "I walk for my son/brother/grandson, Drew" His said "I walk for me!"

Dan, Drew, Grandma Kathy and Ava nearing the finish line

Grandma Kathy and Ava

Me and Drew. I caught up with the walkers near the finish line.

Ava, Drew and Mommy

Our heart warrior finishing strong

We made it!

Hanging with heart buddy Casey (this picture is stolen from his blog!)

Drew with his buddy, Dinger

Ready to bounce

Ava in the bounce house

Blood Drive

A few weeks ago I organized a blood drive for our Hearts of Hope support group. Since every child who has undergone open-heart surgery has received blood, I thought it was appropriate that we help to replenish the blood supply. We had a center drive, which means that everyone makes appointments at a specific Blood Source location and donates there. I got about ten people signed up to donate and was pleased with the turnout, especially of my non-HOH friends who came out and donated blood to support me!




I encourage everyone to donate if you are eligible and you can even use our donor number, 925, to credit the Hearts of Hope group.

Here are some facts from Blood Source:

The need for blood

The need for blood donation continues to increase. Today, more than one in seven people entering a hospital for care will need blood. Other people receive blood transfusions to fight life-threatening disease.

By the time you reach age 72, you could be one of 95 percent of all Americans who will have been treated with blood or a blood component. Here are just a few examples of those who need blood:

• Accident or burn patients
• Premature infants
• Heart surgery patients
• Organ transplant recipients
• Individuals fighting cancer, leukemia or blood disorders

As the primary regional blood center in Northern and Central California, BloodSource must collect 700 units of blood each day to supply the needs of nearly 40 hospitals in our local area alone.

Helping neighbors in need

On any given day, tens of thousands of units of blood are needed in the U.S. After meeting our local needs, BloodSource also provides blood to hospitals in other parts of the U.S. that cannot go it alone. This is done through a national network of blood centers whenever there are shortages elsewhere. For example, BloodSource provided blood components to New Orleans for months after Hurricane Katrina and, more recently, to Southern California in response to a train collision.

Quick facts:

• Three teaspoons of blood can save a baby's life
• One donation has the potential to save as many as three lives
• If 50 people donate, they could provide enough blood to take care of victims of a major car accident
• If 20 people donate, they could help one burn victim
• Whole blood donors can give every eight weeks
• Today, fewer than four of every ten people in the U.S. are eligible to give blood. Fewer than one in ten actually donate
• Approximately one out of every seven people entering the hospital needs blood
• Plasma donors can give as often as every three days
• Blood lasts only 42 days
• Platelets last only five days
• Approximately 40,000 pints of blood are used each day in the United States.

In the news

I think I forgot to mention that we were interviewed by News 10's Jennifer Smith at the Hearts of Hope BBQ. You can see me and Drew if you check out the following link:

Hearts of Hope: Children with Heart

Helping a Family in Need

Edited on August 19th-Prizes have been updated!

During Drew's recent hospitalization we felt incredibly loved and supported by friends and family. One of our friends organized a raffle to benefit our family and help with all the expenses associated with being away from home and living out of the hospital. Many of you actually donated items to the raffle or bought tickets to support us. We were so grateful to have so many people come together to offer us help in a real, tangible way.

So of course, I jumped at the chance to provide that kind of help to another family in need. As the new co-chair of the Hearts of Hope support group I am in charge of putting together a raffle to benefit the Torrente Family. Here is their story.

Arianna Torrente

Arianna is a sweet 3-year-old girl. She just had her third open heart surgery in June at Sutter Memorial Hospital in Sacramento. She has had lots of complications and is now in her NINTH week of hospitalization. Her parents, Bahar & Miguel, are from Stockton and have stayed with her as much as possible. They are living at The Sharing Place, which is family housing located right on the Sutter campus. She also has a six-year-old sister who is now staying with them at the hospital since Miguel had to return to work. This week her parents were told it might be another six weeks. That would be fifteen weeks living away from home, missing work, eating every meal out and still paying bills at home.

The Hearts of Hope Support Group would like to support this family by putting on a raffle. Raffle tickets are $10 each or 3 for $25. All the proceeds from the raffle will go directly to the Torrente family to help with their costs associated with this hospitalization.

Prizes are:

$50 Spa Finder Gift Card
$200 MAC makeup set
Haircut with Lindsay Sells of Joseph Anthony Salon
$100 Gift Card to Outback Steakhouse
3 decorative (empty) 1.5 liter wine bottles that have the Sacramento Kings logo etched on them
3.5 liter bottle of Penfold's Thomas Hyland Shiraz Vintage 2002
Dewar's logo golf bag

If you are interested in purchasing raffle tickets please contact Andrea Himmelberger at a_himmelberger@hotmail.com or 916-606-7180.

Fairy Tale Town

Today we went to Fairy Tale Town with our Hearts of Hope support group and had a great time! We had 16 families (I think), which is the largest turnout we've had so far. Fairy Tale Town donated the passes to our group and gave us a discount on the lunches that HOH provided for everyone. The kids had lots of fun playing, climbing and sliding. And there was media coverage which is great for getting the word out to other families.

Here is a link to my interview with KFBK, a local news radio station. I actually haven't heard it yet, but I hear it was a good piece.

There was also a short story on the Channel 10 news at 5:00.

The most exciting part for me was watching Drew run around and climb the stairs by himself, without having to stop because he was breathing so heavy. This is still new and amazing to me since his last surgery. He went up the Owl slide 8 times in a row without getting tired! And he didn't spend any time in the stroller the whole time we were there. I am so grateful that his surgery was such a success!