Tag Archives: Heart Defect

Our Easter

Easter for our family is full of Miracles. Six years ago, on Easter Sunday, we spent the afternoon eating a special Easter dinner at the hospital while our little guy was having open heart surgery to correct his congenital heart defect -transposition of the great arteries. I remember the first time I saw one of the pastel yellow flyers that was taped to the wall and how I had smiled when I read at the bottom “sponsored by The Church of Jesus Christ of Latter-day Saints.”

I don’t remember too much about that particular dinner. I do remember being surrounded by people who, even though they didn’t know me personally, cared, loved,and prayed for our little boy. I don’t recall really tasting the wonderful food, or the names and faces of those present, but I can still feel the feeling of support today.

There is one person, however, that I remember very well. Sandi organized the dinner and at the time we had swapped emails, though I didn’t remember. Months passed, and suddenly in my inbox appeared a timid message inquiring how the surgery had gone and how our son was. Not hearing from us, she had feared the worst, and I sent a quick reply that all was well, and could we come help at the Thanksgiving dinner.

A beautiful tradition began. Every Easter, Thanksgiving, and occasional Christmas, we took the family to the hospital to serve dinner to patients, family and staff. As I have watched my family eagerly serve my testimony of Christ’s gospel has grown. I truly believe that “Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.” (Matthew 25:40)

Prior to our son’s heart defect, surgery, and stay in the hospital, I had no idea what these seemingly simple acts of service meant – what an impact they have on the lives of others. We are and can be angels to each other. Sandi has been and is one of many angels to us and we have become dear friends. She will always hold a special place in our hearts.

So, Easter this year was a little different – we almost didn’t know what to do with ourselves. We enjoyed a wonderful Easter program of amazing musical numbers (we live in the most talented ward ever) and scripture readings. We had a wonderful Easter dinner with old friends. But even then it felt just a bit empty, and it was a little sad not going off to serve.

I guess that means I have my work cut out for me to find something for us to do in the future, for what better way can there be to celebrate Easter and all that our Savior Jesus Christ has done for us then serving His children. He lives. I know He lives and loves us. We can be His hands in bringing joy and comfort in dark places.

So, in keeping with angels, I had to make this little video with some of our amazing angels set to one of my all-time favorite songs- “Angels Among Us” by Alabama.

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

And the Family Dances…

Last year we started a new tradition, the family dance. The girls had wanted to attend the community daddy daughter dance, but they were charging some exorbitant fees that were way beyond us, so we created our own dance. We even got formal, and had tons of fun. Last year’s Family Valentine dance brought us this gem

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This year they seem to be getting along a little better. ๐Ÿ™‚

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We didn’t get quite the classic funny photo as last year, but I did get a few cute accidental shots (and on purpose shots too). We decided to be casual, but I think we’ll be formal again next year. Whether formal or casual though we had tons of fun – I think this tradition is around to stay!

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Finally, February was Congenital Heart Defect Awareness month and Jacob’s school did Jump Rope for Heart sponsored by the American Heart Association. The kids got to decorate a heart in honor of someone, and of course they all chose Jacob. He wanted a picture showing off his zipper for the occasion. (and I heard from his teacher that he showed off in person too! hee hee)

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

CHD AWARENESS WEEK

In years past I have done numerous different posts during Congenital Heart Defect Awareness Week to promote awareness and this year is no different – though I am giving more of a shout out to a fellow mom who has an amazing line-up of guest posters this week as other heart moms guest post and talk about their heart miracles (I’m one of them – on the 11th). I think she even has a survivor slotted to guest post, and a cool give away too – so be sure to check out her 7 Hearts for 7 Days blogging event. Oh, and if you swing by to check out her awesome blog (and I really hope you do) be sure to drop a comment and mention that I referred you – please, please :-D.

We are coming up on our 5 year anniversary! Five years ago I knew nothing about congenital heart defects, I certainly didn’t know they were the number one birth defect. I’ve learned a lot since then and met a lot of amazing people from the wonderful doctors and nurses who helped save Jacob’s life to wonderful parents and children who inspire and uplift me daily.

Since it is awareness week I wanted to post 7 CHD Statistcis followed by a few links to some of my favorite CHD Awareness Week posts from the past:

1. Congenital heart defects are Americaโ€™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.

Jacob’s Story (it’s long – the short version will be in my guest post on the 11th)

7 Strangers Who Saved My Son’s Life
7 Ways CHD Has Changed My Life
7 Frequently Asked Questions
7 Ways You Can Help

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Filed under CHD, Heart, TGA

2009 Children’s Heart Foundation Heart Picinic

It’s hard to believe that four years ago I didn’t even know what heart defects were. I didn’t even know that some of the families I knew at the time were heart family survivors. I thought they uncommon and rare. When Jacob was born all that changed.

The moment we were life flighted to the hospital and he was diagnosed with Transposition of the Great Arteries my eyes were opened and our lives changed forever – for the better. Yes there have been many scary moments and I would have never wished or wanted our son to go through heart surgery and all the things he did, but we have grown through it and our lives are more enriched. I have met amazing people and made lifelong friends. My faith has grown in ways I never knew possible and I have found an amazing cause worth fighting for. (There are a lot of amazing causes worth fighting for – but sometimes there is that one that you feel connected to.)

On Saturday our local Children’s Heart Foundation chapter held a family picnic for CHD survivors and their families. It was fun and amazing to see Jacob running around with all the other kids and to chat with other heart moms I have come to know and love as we pray for each other, cry with each other, and celebrate and cheer with each other.

There was face painting and games and some great reminders about the importance of research – (which is what the Children’s Heart Foundation funds – research for Congenital Heart Defects). Our cardiologist was even there and it is always wonderful to see him (out of the office of course!).

We hope this new tradition of the Heart Family picnic continues and that next we can see the return of the Lion Heart Festival in addition.

2009 Heart Picnic Collage-001

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Filed under CHD, Heart, Jacob, TGA

Heart Walk Coming Up

Usually I post about it long before now, but things have been abnormally busy. ๐Ÿ™‚ The annual Portland, Oregon are Heart Walk is fast approaching! I finally managed to get myself signed up for it today. It is hard to believe that Jacob is already four years old! The walk will be on May 17th, and I invite any who are in the area and want to join us, to please do so, and any who feel inclined to donate, your donations are needed, welcomed, and we are very grateful for them!

Join the Walk

Donate

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Filed under CHD, Heart, Jacob, TGA

Jacob’s Cardiology Appointment

We had Jacob’s cardiology check-up today and everything is going well. There is a slight murmer – which is caused as blood slips through his pulmonary a bit quicker, and that is fine – apparantly it is very normal for Transposition patients and Jacob’s is better than most. He also has a mild leak of the aortic valve. It has increased some, but isn’t anything to cause concern. If it worsens a lot then at some point something will be done, but the cardiologist didn’t see that happening.

Jacob has no physical restrictions and doesn’t have to go back for another cardiology check-up until he is 6! Another two years! Yippee!

The doc was impressed with his energy – which Jacob has A LOT of. They double checked his oxygen (mainly because part of Jacob’s lip looked blue – but his has looked like that off and on since he bit through it and had to have stitches. When it decides to look purplish/blue it is also cold to the touch. Kinda wierd.) and it was perfect – 98-100.

Jacob getting his echo

He trooped right through his echo, though I think Thomas the Train helped a great deal in keeping him still. All in all, a great trip to the cardiology office today. ๐Ÿ™‚

P.S. I think we finally have this boy potty trained!!! WOOT!!

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Filed under CHD, Heart, Jacob, TGA

Blankets

Last Friday I recieved an email that was sent out to all the ladies in our ward (that have email) that Emmanual Children’s Hospital needed baby blankets.ย  Apparantly they only had one or two left.ย ย  I was especially excited for the oportunity to make some blankets to send to the hospital.ย  As I read the email a thrill of excitement went through me. They were going to be delivered on Halloween – and I had James’ post-op appt on the same day.ย  When the lady that was going to the the blankets up to the hospital had her baby, I was asked (since I was going anyway) to go.ย 

It was so wonderful to watch the mound of blankets growย  and to deliver them to the community laison at the hospital.ย  She was so grateful. They hadn’t recieved a blanket donation in two months.ย  Usually they get donations all the time, but they are particularly low right now.ย  I’m hoping to get some other wards to start blanket projects and maybe we can inundate them. ๐Ÿ™‚ย  It was wonderful to help and give back something that had meant so much to us when Jacob had heart surgery.

For those who are new to my blog and want to know the history behind this post check out these links:

Jacob’s Story (short version)

Jacob’s Sotry (long Version)

Not Just a Blanket

James’ appointment also went very well. There are no problems whatsoever.ย  He just has to have his ped check his testical once a year and once he gets to teen years he learns how to do a self exam and has to do it once a month.ย  Actually, and I didn’t know this, just like women are supposed to give themselves a self exam monthly, men are supposed to as well.ย  Anyway, I just mention it in case others are clueless like I, and my husband, are. ๐Ÿ™‚ย  It will be especially important for James because his risk will be higher.

On the sickies front:

Elizabeth’s temp is normal, except for those moments when it is not.ย  I was an irresponsible parent and sent her to school today, even though her temp last night (after being normal for the ENTIRE day) jumped to 100.5.ย  It was 99 this morning, so I didn’t feel too bad. She was in tears of devestation last night when she learned she might not be able to go to school today.ย  She loves school so much, and today is Halloween, I couldn’t be THAT mean to her when she was feeling so good.ย  It was normal when she got home from school today – and then 99.3 a couple hours after that. So who knows what it is doing.ย  Her glands still feel swollen.ย  I figure we’ll get through the weekend and then see what things look like on Monday.

James has a bad cold and is very congested, but at least he isn’t croupy any more.

And, I caught it.ย  The cold that is. But at least we are headed into the weekend, which means I’ll have a hubby around to watch kids so I can NAP.ย  WOOHOO! ๐Ÿ™‚

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Filed under CHD, Children, Heart, TGA

Little Things Between the Busy

I had my eye exam last week and thankfully my eyes haven’t changed much. Because of our awesome insurance plan from Paul’s work we have great vision benefits, so I get contacts! ๐Ÿ™‚ Woohoo! Today I had my fitting (it has been three years since I last wore contacts, and I am at a new vision clinic, so I couldn’t dodge the fitting bit) and got to order my new contacts – and wear my first pair home. Yay!

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Last week when I had my vision exam, as the assistant and I visited, we tried to figure out how long it had been since my last exam. I finally figured out that it was the year before Jacob was born, and then I didn’t have another exam because of his heart surgery. She mentioned that she had open heart surgery when she was two years old due to Aortic Valve Stenosis. The doctors had told her parents that in seven to ten years she would need another surgery. She is now 28 and going strong – not yet having that second surgery. It was awesome to visit with her. It is always neat to meet adults with CHD and see that a normal wonderful life really is in store for our heart kids. ๐Ÿ™‚

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I am in the process of getting the first three chapters of my manuscript perfected to the point of being submitted to some different publishers – its rather exciting, but way, way, way more scary. Way more scary. I must say though, that I am so grateful for my awesome writing group for their support and encouragement – not to mention helping clean my manuscript up so it isn’t aweful.

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Our trip to Utah is off – I’m dissapointed and relieved. I am bummed that I won’t get to see my brother from Vermont, as it has been nine years since I have seen him. There is a silver lining though, and that is that they are moving out to the Seattle area and we will see a lot more of him very soon. I am relieved because after all the business and nearly constant family (not that I am complaining – it has been so FUN!) I don’t know that I could handle a huge reunion with 26 kids – not to mention driving there with my five packed in our little van.

So, that leaves us with a week and a half of unexpected free time – maybe we’ll go camping, or maybe we’ll bash around locally. All I know is that we will have a week and a half of FUN! ๐Ÿ™‚

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We have been enjoying having my parents here sooo much – I really wish they didn’t have to go so soon – they will be taking off in a week. The time has flown by so fast. We are so thrilled to though that they are going on a third mission. We miss them, but are so proud of and excited for what they are doing. We have enjoyed listening to the mission stories and seeing all their photos. I feel like I have the most awesome parents in the world!

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One last observation – it sure is hard to find time to clean the house when you are constantly on the go. ๐Ÿ™‚

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Filed under CHD, Family, health, Heart, Writing

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. ๐Ÿ™‚

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 ๐Ÿ™‚

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

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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. ๐Ÿ™‚ *

AHA Heart Walk

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

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Filed under CHD, Heart, TGA