Category Archives: TGA

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.

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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

He’s Four!

It seems so hard to believe that Jacob is four years old today. It is amazing to me to look back at his journey.

2005
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2006
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2007
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2008
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And now it’s 2009 and he is 4! Wow! What a celebration. Happy Birthday kiddo! I can’t begin to say how much you have enriched our lives.

(he was supposed to have his cardiology appt. yesterday – but we had to re-schedule do to illness – he and James have RSV – but we caught before it got really bad. Both boys are improving greatly. More about that in another post. His cardio appt. will be on March 31)

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Filed under CHD, Children, Heart, Jacob, TGA