Category Archives: Heart

Our son, Jacob, was born with a congenital heart defect: transoposition of the great arteries. Though not all posts found here are heart related, a lot are, and those that are not, are part of our journey as parents to a heart child.

Lion Heart Festival

Our 4th Lion Heart Festival, a fundraiser for the Children’s Heart Foundation,- 3rd year volunteering – took place on Saturday, July 12 – Along with Emily’s birthday (I will do a birthday post for her soon). We were stationed in the retail booth again – which is perfect for us, since it affords us the flexibility we need with the kids- especially a baby. It was wonderful as always to visit with heart moms and friends, and see the kids in the yellow t-shirts playing to their delight.

It was the best and biggest so far, with many new activities along with all of the old. Once the entry donation is paid everything in the festival is paid for, except the climbing wall and things purchased at the retail booth. Even lunch, cotten candy, popsicles, and snow cones. Most of the pictures we took are of Jacob – partially because he is our Lion Heart, and also because the girls were off having fun, and Jacob had to hang out with either Dad or I, so there was always a camera near him. 🙂

One really cool thing, was that Jacob’s cardiologist, Dr. Legras, was there with his family, so were were sure to snag a photo of Jacob with his awesome Doc.

Dr. Legras and Jacob

Every year they have a marimba band – Jacob and I were walking past it and he stopped in his tracks, absolutely enthralled. He refused to budge for two entire numbers – and they weren’t short! He asked all sorts of questions and got to inspect them up close. Then, when the girls came to listen, he happily joined them for more.

Watching the Marimba Band

There was a circus section where you could try riding a unicyle and other circus acts – here is Jacob learning to be a clown – wait! He has that one down pat 🙂

Jacob learning a new circus act

Jacob loved crawling through the tunnels in Pitter Patter Land

Jacob in the Tunnel

At every Lion Heart Festival there is a comunity art project where everyone contributes sometihng to the work of art and then they auction it off at the end of the day. Here is Jacob contributing his part to the comunity art project.

Jacob working on the community art project

Community Art Project

We had the bouncy house, the ring toss…

Jacob Bouncing in the Bouncy House

Ring Toss

And a visit from Elmo (there were visits from Doro and Diego too – but we never saw more than one at a time, so we think it was the same guy – just sporting different costumes – we thought that was pretty cool.

Elmo!!

Hugging Elmo

And I can’t forget about the face painting – we ended up with Dorothy as a Horse, Emily as a Butterfly, and Elizabeth as a Lion

Horse

Butterfly

Lion

James had fun too!

James

And finally there was the grand Lion Heart Parade with a photo of all the Lion Hearts at the end

Lion Heart Parade

The Heart kids at Lion Heart

The fundraiser festival was a great success, not to mention tons of fun!

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Filed under CHD, Dot, Em, Heart, Jacob, James, Lizy, TGA

14 Feet Trekking Through Portland

*I am going to attempt to keep this post at the top of the blog – so for any new posts I write, look just below this post. 🙂 *

AHA Heart Walk

Just go to that link to join, donate, or get more information.

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Filed under CHD, Heart, TGA

7 Ways CHD Has Changed My Life

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This one is a bit similar to the reason why I am happy though focuses more on changes, both dramatic and small.

1. They Mommy Paranoia – I have never been a paranoid parent – I was never one to over-react over hurt children and illnesses. In fact I always erred on under-reacting. Not any more. I don’t think I over-react, but I definitely keep a closer eye on all of my children when they start complaining about stuff or get quite sick – especially our new baby.

2. Second Guessing – Because of the situation in which Jacob’s defect was discovered I have gained an annoying habbit of second guessing myself. Although there was no way of knowing something was wrong, part of me still says I should have noticed – so that has created a complex where I feel that sometimes I can’t trust my own judgement. Personally I think it is pretty normal with Moms and Dads who have children with serious illnesses. Thankfully, the feeling of not trusting in my own judgement as much is ballanced with trusting in God more.

3. Preparedness – I am more prepared for emergencies both small and large. It caught us by surprise this whole heart defect thing. On the rare occasion I had heard of a heart defect I figured that thye were few and far between. Before Jacob none of my children had had anything worse than a nasty cold. I lived in a bubble where I never realized that any of these terrible things could happen to my family. That bubble has been burst and it is a good thing. I have a large first-aid kit in my car for what ever could happen. I have an army of phone numbers with me and an emergency cell phone. My family and I have been working on making sure we have our 72 hour kits up to date. This experience has just made me aware that you never know what is going to happen in life and a little preparation goes a long, long way.

4. Family and Marriage – Having a child with CHD, or any serious illness, has a huge impact on family dynamics. Jacob was our fourth child and it hit our children hard – especially our second daughter. Suddenly our three girl’s long wished for baby brother was in the hospital and Mom and Dad were gone almost constantly for weeks on end. While we tried our hardest to spend at least an hour or two every evening with our other children it still affected them dramatically. When I took Jacob in for his minor, one-day, procedure last year (two years after his surgery) my second daughter anxiously asked, “Is he okay, how long will you be gone? Will you be gone really long again?” She was anxious and rightly so. The effects can be lasting and take time and years of love and patience to find a place where everyone can feel secure and stable again.

Marriage can be strongly affected too. Paul and I pulled together and were grateful that we had each other to lean on. We cried together, we prayed together, and came out of the experience a lot closer, and, in Paul’s case, a lot grayer. 😀

5. Trust in God – When everything is completely out of my hands and there is no one to turn to, no comfort to be had, I know that I can turn to my Father in Heaven and that he will lift me and give me the strength to carry on and make it through. My love for Him has grown.

6. Zest for Life – All of our children have it, our Jacob has it in spades. I have learned to encourage it, relish it, and love it. To see the world as they see it, so fresh and new. Taking time to enjoy even the smallest things. Learning to be my silly self again and not always the serious Mom. It is a rediscovery of who I am and who I want to be. You never realize how much you take for granted until you almost loose, or loose, some one close to you.

7. Service – I can’t even count the numerous people who dropped everything for us and served us in ways they didn’t even know. Both strangers and friends.

There were blankets that we recieved that were made and donated to the hospital, there was an easter dinner for all the Pediatric patients, families, and staff, there was an annonymous food card so we didn’t have to spend money on food, a friend found out we had nothing our first night at the hospital and went and bought us all the bare essentials, there were meals brought in to us, there were friends handling calls so I didn’t have to constantly go over all the details, there were hugs, there prayers in multiple countries and multiple religions.

The list goes on and on.

After receiving such amazing love and support from others I am more eager to give. I know what a difference it makes and I am eager to teach my children to love, help, and serve others.

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Filed under CHD, Heart, Religion, TGA

7 Ways You Can Help

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1. Donate Blood – Most children with a CHD that requires open heart surgery need at least one blood transfusion, and many, like our Jacob need 2 or more, then some of those children will have two or three surgeries. Without blood from donors like you they would loose their lives.

2. Donate Funds – I know most “typical” families like ours struggle with finances, but if you find it in your abilities, a donation to a reputable foundation goes a long ways. Research for CHDs is grossly underfunded. The Children’s Heart Foundation is one foundation that is dedicated to funding research of congenital heart defects. It is through this research that better repairs, like the arterial switch Jacob recieved, become available. There are many foundations that help fund research and help families, etc.

3. If you know of a local group in your area support the group – it doesn’t have to be through monetary donations either, often they can use helping hands in planning activities and fundraisers, etc.

4. Become an Organ Donor – I know of a number of children who are alive today because of heart transplants.

5. Work for a Cause – you can have your own mini fundraiser and donate the funds to an organization or family in need – Elizabeth’s Lemonade stand this summer was a huge success.

6. Educate – share what you know with others – you never know when you might be talking to a future parent of a child with CHD

7. Support, support, support – most important of all is the support you offer to families whose children are in the hospital due to CHD and other illnesses. A simple visit, a meal, a hug, all these are things that will change their lives and do far more than you could ever imagine.

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7 Pieces of Advice for CHD Parents

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My two cents worth for parents of a child with CHD or any other serious illness

1. Don’t be afraid to ask questions – and the same question numerous times at that! You need to know everything you can about what is going on. No question is a stupid question.

2. Speak out if you think something is wrong – you know your loved one best.

3. Join a support group when you feel ready – we didn’t feel ready until after the surgery because it all came on so suddenly. Not only can you recieve support, but give it as well.

4. Ask for help when you need it.

5. Accept help when it is offered – you need someone to lean on and they want to help in any way they can.

6. Cherish every moment.

7. Treat your child as normally as possible – encourage them to experience life to its fullest capacity.

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7 CHD Statistics

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Here are 7 statistics taken from The Children’s Heart Foundation

1. Congenital heart defects are America’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.

2. Congenital heart defects occur frequently and are often life threatening, yet research into them is grossly under funded.

3. More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.

4. Congenital heart defects are the #1 cause of birth defect related deaths.

5. There are 35 different types of congenital heart defects. Little is known about the cause of most them. There is not yet a cure for any of them.

6. This year almost 40,000 babies will be born with a congenital heart defect. 4,000 of them will not live to see their first birthday.

7. In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

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7 Reasons I am Happy to be a Mom to a Child with CHD

Seems like a bit of a funny title – no one is really happy to be the mom of a child with a defect or other health issues and challenges, but joy can be found even in the hard times.

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1. I take more time to ENJOY the children rather than worry about whether or not the dishes are done.

2. I have a closer relationship with God, my husband, and family.

3. I have a new appreciation for life and the wonder of how glorious it is.

4. I don’t take as many things for granted – I realize every moment is a precious moment that can be lost and never retrieved

5. I have met a whole lot of neat people that I wouldn’t have met otherwise. Lets face it – no one WANTS to be in this situation but great friendships are formed because of it.

6. I remember to snuggle a little longer, and to never let the kids leave without a hug (they will love that as teenagers, won’t they?)

7. I realize that when I lack the strength to carry on, the Lord picks me up and carries me the rest of the way.

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7 Frequently Asked Questions

This post is borrowed from th CHD blog, but I thought it would be a good one to share.  This FAQ is taken from a fact sheet provided by the American Heart Association. The full fact sheet, if you are interested, can be found here.

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1. What is a congenital heart defect?

Congenital heart defects are structural problems with the heart present at birth. They result when a mishap occurs during heart development soon after conception and often before the mother is aware that she is pregnant. Defects range in severity from simple problems, such as “holes” between chambers of the heart, to very severe malformations, such as complete absence of one or more chambers or valves.

2. Who is at risk to have a child with a congenital heart defect?

Anyone can have a child with a congenital heart defect. Out of 1000 births, 8 babies will have some form of congenital heart disorder, most of which are mild. If you or other family members have already had a baby with a heart defect, your risk of having a baby with heart disease may be higher.

3. How many people in the United States have a congenital heart defect?

Estimates suggest that about 1,000,000 Americans have a congenital heart defect. Approximately 35,000 babies are born with a defect each year.

4. Why do congenital heart defects occur?

Most of the time we do not know. Although the reason defects occur is presumed to be genetic, only a few genes have been discovered that have been linked to the presence of heart defects. Rarely the ingestion of some drugs and the occurrence of some infections during pregnancy can cause defects.

5. How can I tell if my baby or child has a congenital heart defect?

Severe heart disease generally becomes evident during the first few months after birth. Some babies are blue or have very low blood pressure shortly after birth. Other defects cause breathing difficulties, feeding problems, or poor weight gain. Minor defects are most often diagnosed on a routine medical check up. Minor defects rarely cause symptoms. While most heart murmurs in children are normal, some may be due to defects.

6. How serious is the problem?

Congenital heart defects are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers combined. Over 91,000 life years are lost each year in the US due to congenital heart disease. Charges for care exceed 2.2 billion dollars, for inpatient surgery alone.

7. Are things improving?

Definitely. Overall mortality has significantly declined over the past few decades. For example, in the 1960s and 1970s the risk of dying following congenital heart surgery was about 30% and today it is around 5%.

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7 for 7 – 7 Strangers Who Saved My Son’s Life

I missed writing during CHD awareness week (Feb 7-14) while it was on my mind, I was busy with many other things and writing has been a bit of a challenge, though I am trying to do better.  Then, this morning I was making my much needed rounds to all of my friend’s blogs that I have been so derilect in reading and on Emily’s blog (featuring her son Gabe) I came across this awesome blog:

chda

They did a really neat set of awareness posts where each day for 7 days they posted 7 things centered around CHD awareness, etc. So, I decided that even though the official week is past, I would like to do the 7 for 7 myself. So here is my first set of 7:

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7 Strangers Who Saved My Son’s Life

1. The emergency room people -they immediately pounced on Jacob when our nurse rushed him across the street to the hospital. I never saw people move so fast. We were later told by our cardiologist if it hadn’t been for their fast work Jacob wouldn’t have had a chance.

2. Our Transport Team – the ambulance came first and when it was decided that the ambulance would take to long and Jacob wouldn’t survive the trip the helicopter was called out. I don’t remember his name, but one of the men on the team stopped in at the PICU from time to time to check up on Jacob’s progress – it sure meant a lot.

3. PICU nurses – while there was an army and they were wonderful there was one named Bonnie who not only helped save our son’s life, but saved ours as well with her thoughfulness, caring, and spectacular advice. She helped us deal.

Also, a PICU nurse whom I think might have been named Chris. He listened to me. When he came on the night shift after Jacob had been extubated for most of the day (and his lungs collapsed)and I told him the Jacob’s color was off and his breathing wasn’t normal, he listened and got moving FAST.

4. Blood Donors – I have a new perspective on giving blood. If it wasn’t for people who donate blood we wouldn’t have Jacob. He had at least 2 transfusions which saved his life.

5. Our Surgeon, Dr. Iguidbashian – he sacrificed his Easter holiday to perform a surgery that couldn’t wait any longer.

6. Our Cardiologist, Dr. Legras – his quick work when we arrived at the PICU kept Jacob alive and stabalized him.

7. Jatene and Mustard In 1975, Dr. Jatene succeeded with the first arterial switch operation for the type of defect Jacob had (Transposition of the Great Arteries). The Jatene procedure, or arterial switch, was pioneered by Canadian cardiac surgeon William Mustard and it was named for Brazilian cardiac surgeon Adib Jatene, who was the first to use it successfully. 30 years later, my son is “fixed” because of their research. This is why advocacy is so important – because awareness of heart defects will lead the public, government and corporations to fund research. And research can and does lead to finding ways to repair more hearts. (borrowed from the blog that started the 7 for 7)

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Link to Published Article

For those of you interested in reading my article that was published in the Ensign here is a link to the article. It is quite short as there is limited space in a magazine, etc. So don’t be surprised by its brevity. 🙂

The article is about an experience that my husband and I had while our son, Jacob, was in the hospital.  (If you are not familiar with Jacob’s story you can find a link to it on the side bar under heart kids)

For those of you who are not familiar with the publication, Ensign, it is a magazine that is published by the Church of Jesus Christ of Latter-day Saints. 

Thanks everyone for your support and interest! 🙂

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Filed under CHD, Heart, Jacob, Religion, TGA, Writing