Category Archives: 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 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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Filed under CHD, Heart, TGA

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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Filed under CHD, Heart, Religion, TGA

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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Filed under CHD, Heart, TGA

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

Busy, Busy, Busy – A Random Tuesday Post (because Friday is so far away)

I keep meaning to write and I keep getting swept away in the hectic fun of summer.  I had a prenatal back on the 5th of July – we figured I was about 14 weeks at that point.  Everything went great, but the only problem was that try as she might my midwife could not track down a heart beat.  Before Jacob I would have shrugged and said “we’ll get it next time” but with paranoia attacking me, and with the extra excuse of wanting to be sure of the due date (my due dates have a way of never being what we think they are), we opted for an ultrasound.  So in we went on Sat. the 7th for an ultrasound.  Baby is in fact in there. 🙂 We heard that glorious little heart beating away and got to watch the little tyke wiggling and kicking around like a regular squirmy fishy.  So, with all the fun of seeing thing #5 and hearing the heart beat, I am now at ease (at least somewhat anyway) until the ultrasound at 20 weeks where we will check for defects and the like.  My due date is officially Jan. 3, 2008, so I am 16 weeks this week.

*****

After the children’s great success with the lemonade stand they decided they wanted to do it again last week, only this time they wanted to donate the proceeds to the Children’s Heart Foundation. So work they did – Tuesday through Friday, Friday they actually put in an 11 hour day, I was rather amazed.  By the end of the week those kids had made over $65! We took some out for tithing and expenses to go back to the kids, and had $50 to donate to the Children’s Heart Foundation. (I’ll have more pictures later – we’ll being doing the lemonade stand more in August and then I will get photos of all the kids 🙂 )

Lemonade With Heart

Liz Selling Lemonade

*****

Saturday was the Children Heart Foundation Oregon Chapter’s annual Lionheart Festival and Paul and I were volunteering again.  The kids dumped all their change and money from the lemonade stand and proudly handed it off to a very surprised and elated president of the chapter.  They were even officially recognized during one of the speeches, which thrilled the kids to no end.  We, of course, had a marvelous time volunteering, chatting with other heart parents, and playing to our heart’s delight.  I even got a charming cariacature of adorable Jacob done by an artist volunteering her time and work.  It was also neat to see how the art project turned out, and we now have a poster with Jacob’s artwork on it. 

Lion Heart Festival

(All the yellow shirts are kids, and adults, who have a CHD)

Jacob with his lion's tail

Lion Heart Art Project

(Jacob’s heart that he painted is in the one in the bottom lefthand corner)

Here are a couple of pictures of Jacob at the Lion Heart Art Project:

Lion Heart Festival Art Project 4

Lion Heart Festival Art Project 1

*****

After church Sunday I needed to get a couple of quick things done, and Paul was in a meeting. I kept a tight hold on Jacob and asked the girls to “Please wait quietly and patiently against the wall, I should just be a minute.” Yeah right. I really only did take a minute, but the girls did not wait peacefully and quietly. They were sprawled on the floor on top of each other – noisily. There was another ward (congregation) in session (the chapel of course was closed, but sound does carry, even through heavy wood doors). As I scolded the girls for not listening and disrupting the other ward’s meeting I didn’t realized that I had let Jacob’s hand go as I helped the girls stand up. With horror it suddenly dawned on me that Jacob was not anywhere near me. I looked across the foyer, just in time to see Jacob quietly slipping into the chapel. With a sigh of, “what could possibly happen next”, I sprinted across the foyer and whipped the door open, snatching for that rascally arm, but to no avail. Jacob raced along the back row. The chapel was uncommonely quiet (where are all their kids???) as Jacob drowned the lone speaker out with his calls for, “Dadda”, “Dadda!”, “Dadda?” as he ran up to our usual bench. With confusion he looked at the stranger sitting there. So, he headed for the sacrament table, after all, Dad was sometimes up there, but then hesitated as he saw no one. That hesitation gave me my last scrape of luck as my hand shot out and snatched the back of his shirt collar. Mid horrendous embarassment and humiliation I scooped up the squirelly thing 🙂 and marched myself back down the aisle, across the back and out the door. There were many amused smiles and chuckling eyes, this was, after all, the ward I had grown up in. (Then I went home and cried – don’t you love those pregnant emotions?)

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Filed under CHD, Children, Dot, Em, Heart, Humor, Jacob, Lizy, Pregnancy, TGA

Awesome Heart Books

While this post may carry little interest to those who are not parents of heart kids, I have been meaning to write it for quite some time.  I have recently read and discovered some fascinating books about those who pioneered heart surgery, etc.

The first book is Partners of the Heart by Vivien Thomas.  Some of you might recognize the name Vivien Thomas because of the extraordinary movie, “Something the Lord Made”.  This is the same Vivien Thomas, and this is his autobiography.  Though at times a bit tough to get through all the medical terms and though it doesn’t carry the charm of being written by a trained author it is incredibly and fascinating to read Thomas’s own words about his experiences with Alfred Blaloc and first surgery on blue babies.  It is an astounding and fascinating read.

I will branch off and talk about the movie, Something the Lord Made.  It is based on Thomas’s autobiography and is absolutely wonderful.  It is quite faithful to the true accounts of the autobiography and does a great job of depicting the drama of the first blue baby surgery.  The auto briography rather glosses the drama over a bit, so I enjoyed the emotion that the movie portrayed, etc.  We own a copy of the movie and I have watched it a couple of times, each time having tears brought to my eyes as I think of all we have to thank these great men for who took such risks.  It is an amazing movie and I recommend it to all heart parents – though maybe not right after or before surgery, that might be a bit much. 🙂

The second book is: King of Hearts: The True Story of the Maverick Who Pioneered Open Heart Surgery by G. Wayne Miller. A biography about Dr. Walt Lillehei who was an amazing man who stopped at nothing and broke all the rules of medicine to be able to find a way to fix the broken heart.  With many side stories about other pioneers such as Dr. Werner Forsmann who performed the first heart catheterization on himself.  The author writes a brilliant and engaging story with a complete bibliography and index.  Dr. Lillehei did not gain the expected nobel prize because of some rather poor personal deicisions (not paying taxes, etc) but his story is an amazing one, as well as all the other doctors involved in his story.  A fantastic read.

Lastly is a book about pediatric cardiac surgeon Roger Mee, Walk On Water: The Miracle of Saving Children’s Lives by Michael Runlman.  A fascinating look into the intense drama of pediatric surgeons and the amazing work they do.  A bit tough to read for me because it hit really  close to the heart, but amazing to share int he stories of this great surgeon and others like him.  The author uses A LOT of profanity and for those who find it offensive, as I do, will find a sharpie useful – It is a great book though – especially without the language.  But for those who don’t mind the language, it will be great no matter what.  The author is very dramatic and he really delves into operating room and the tension and drama – it is almost overbearing and I had to concentrate on not picturing my kid, but I am so glad I read it.

I am always looking for more books and fascinating info on these amazing men who worked at the front of Cardiac Surgery, so if anyone discovers other amazing books or resources, I would love to know about them.  I hope those who dive into these books thoroughly enjoy them.  They are hard to find at libraries and local book stores (thought libraries are more likely than local bookstores), but they can all be found on Amazon.com and a lot of them can be purchased for pennies used – that is how I got my copies.  If you read any of them be sure to let me know, I would love to discuss your thoughts on them.

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Filed under CHD, Heart, TGA

Jacob’s CHD Quilt Block

The Congenital Heart Defect quilt project is an ongoing project to promote CHD awareness.  Some time ago we put Jacob’s information in for a quilt block to be made by volunteers in his honor and placed on one of the many quilts.  Each quilt block is dedicated to a person who has or has had some tpe of congenital heart defect.  Currently there are close to 37 quilts completed, each one honoring 42 individuals.  Jacob’s block will be on quilt number 46 – so that gives you an idea of how big and incredible this project is.

All 50 states and Washington D.C. are represented as well as 22 foreign countries.  For more information on this amazing project feel free to check out: The CHD Quilt

Today we recieved an email with a photo of Jacob’s block, which we adore: (with a few edits for privacy sake)

Jacob Quilt Block Edited for Online

The volunteer did a great job of capturing some of his favorite things: dogs, cheerios, and bubbles/baths.

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Filed under CHD, Heart, Jacob, TGA

Jacob’s Mini Surgery

Jacob’s little mini surgery to invistigate the re-occurring pimple that wouldn’t drain on its own along his incision line was today and went really well.  The surgeon (same as performed his actual heart surgery) made a small incision at the top of his previous site.  A small cavity was discovered, though not irritated by any loose wires (from when they wired his chest shut), the surgeon actually didn’t know what caused the cavity/sinus tract, so we were especially glad to get it cleared up.  He cleaned out the tissue in that area down to his sternum, pulled the surrounding tissue together and stitched him back up.  The whole process only took about 45 minutes.  He mentioned that the portion of bone he saw looked really good and firm, and the rest of his sternum felt solid as well.  So, great marks from our surgeon for Jacob.

Recovery went well though it did take a while for his  oxygen to climb up to where it needed to be as he had a cold over the weekend and had gunk in his lungs. It took him one throw up and a number of good hearty coughs before the numbers climbed into the higher 90s where they belonged (they wanted to hang out at 88-90) He is now home and happy playing in the family room with his trucks and sleepy papa.  Now we just need to keep the site clean (maybe an inch long, if even that) and dry for a couple days and watch for signs of infection.  It hurts him some, but doesn’t seem to cause him a lot of pain and he is largely ignoring it.

Here’s our little man hanging out with his new found friend from the hospital after the surgery was over – he’s still a bit out of it.  He chose that dog from the pile of animals and promptly named it “Susie” after our dog at home. I don’t think he has let it out of his sight since. 🙂

Hanging out with his new friend after surgery

Now he is a little more awaking and getting his blood pressure taken while munching on a delicious orange popsicle. You can see that the incision the surgeon had to make this time was very small – this really was a very minor surgery.

Blood pressure and popsicle time!

Of course, minor or not, it doesn’t keep you from stressing out while he is in there. And I can tell you that his numbers not wanting to climb (even though high 80s is considered awesome stats for a lot of heart kids) brought back a lot of uneasy memories and feelings. But as you can see here, there is nothing to worry about now. 🙂

This is good...

So, hooray for Jacob! and now, I am off to take a quick nap before I need to pick up the children and get dinner ready…after all I’ve been up since 4:30 this morning. 🙂

p.s. if there are typos and gross errors I am terribly sorry, and I hope it all makes sense, because I think I am hardly coherent right now….

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Filed under CHD, Children, Heart, Jacob, TGA

Cardiology Appointment

Jacob also had his cardiology check-up today.  I know, we are such mean parents, making him go see the cardiologist on his birthday.  He didn’t seem to mind to much though.

Cardiology

He was even pretty good through his Echo. He wasn’t too sure about things at first, so they had Paul hold him. But he adjusted pretty quickly and didn’t protest too much when they had paul lay him down. He even got to watch a fun movie. 🙂

Echo

Everything looks super they said. He has a slightly leaky aortic valve, which they said is very normal for Transposition patients. They also said that it isn’t something that looked progressive, so it causes no concern and there is no reason to hold him back physically at all (like we could even if we wanted to, heh). The next cardiology appointment doesn’t have to be until he is 4 years old – whoopee! 🙂

We did, however, ask the cardiologist about Jacob’s incision site. There is a recurring pimple that always come back in the same place. It never drains on its own – just gets red and puffy, until I gently press on it and all the gunk comes out. We just wanted to make sure that it wasn’t a problem. The cardiologist called in the surgeon and we explained what was happening and showed him the site. He told us it is somewhat common and probably what is happening is there is a cyst or small cavity near the wires. So they will schedule us for a day procedure to sedate Jacob and take care of that. There is no major concern, but it just isn’t a good idea to leave a possible infection site alone, especially when it keep recurring. So we should have that all scheduled by the end of the week.

All in all, things are gowing super well and he is a healthy happy little guy. 🙂

Oh, and to make up for his birthday visit to the cardiologist we took him out to lunch.  I think he forgave us over the brownie and icecream. 🙂

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Filed under CHD, Children, Heart, Jacob, Parenting, TGA