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  #1  
October 17th, 2008, 08:40 PM
stacyp's Avatar Mommy to Andrew & Luke
Join Date: Nov 2005
Location: OHIO
Posts: 17,229
I know we have all introduced ourselves but I thought maybe we could have a thread started & then maybe sticky this so when new members join they can check it out? Just a thought.
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  #2  
October 17th, 2008, 11:27 PM
Girl_interrupted
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My name is Kim. I'm a SAHM of four. My third child, Madeline, is my heart baby. She has Tetralogy of Fallot with Pulmonary Atresia.

My Maddie was born on Valentine's Day, 2006 (definition of irony again?), and she was diagnosed nearly a year later, on February 2, 2007. She had her surgery-Unifocalization of aortopulmonary artery collaterals-on February 28, 2007.

Maddie has the best doctors in the state of Florida (or if you ask us-the whole world).

My other children are: Katerina, 11; Kaitlinn, 9; and Anderson, 9.5 months.

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  #3  
October 18th, 2008, 06:19 AM
stacyp's Avatar Mommy to Andrew & Luke
Join Date: Nov 2005
Location: OHIO
Posts: 17,229
I'm Stacy, Mommy to two beautiful boys. My youngest, Luke, is my heart baby born 05/28/08. He had an ASD, VSD & PFO with repair on September 11, 2008. He also has Trisomy 21.


My other son is two & his name is Andrew.
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  #4  
October 18th, 2008, 07:58 AM
Girl_interrupted
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I love the names Andrew and Luke. My husband's name is Andrew Scott, but we call him Scott. My son's name is Anderson (son of Andrew) Luke. We call him Luke.
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  #5  
October 18th, 2008, 07:57 PM
Super Mommy
Join Date: Mar 2008
Posts: 555
My name is Jennifer. Jack is my heart baby and he's my first child. We're really new at this. He's 12 weeks old and was diagnosed with VSD at 3 weeks old. He has some growth restrictions and feeding issues, including FTT (failure to thrive- but I hate that description). He was full-term, but born at 5.5lbs due to a true knot in his cord. We are still going through all of the testing etc to determine why he won't eat. He is our little Angel.
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  #6  
October 19th, 2008, 04:57 PM
MellieB's Avatar Platinum Supermommy
Join Date: Nov 2005
Location: Melbourne, Aust.
Posts: 64,110
I'm Mellie, mama to heart angel Zachary. Zac had tricuspid atresia, transposition of the great arteries, a vsd, and a narrow aortic arch. Following his first surgery at 5 days old, he suffered damage to his phrenic nerve and needed plication of his diaphragm at 2 weeks old. He struggled with infections and at 8 weeks old developed third degree heart block which required insertion of a permanent pacemaker. At the same time his second stage OHS was done 2 months early. He again struggled with infections but finally came on on July 29th. We now know he suffered a heart attack and passed away the evening of August 13 at 4 months and 4 days old.
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  #7  
October 20th, 2008, 01:48 PM
stacyp's Avatar Mommy to Andrew & Luke
Join Date: Nov 2005
Location: OHIO
Posts: 17,229
Quote:
I love the names Andrew and Luke. My husband's name is Andrew Scott, but we call him Scott. My son's name is Anderson (son of Andrew) Luke. We call him Luke. [/b]




Mellie, a million hugs to you.
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  #8  
November 22nd, 2008, 06:16 PM
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Join Date: Oct 2004
Location: *queen city* of North Carolina
Posts: 9,497
I'm Rachel, mommy to Hailey. She is two and half years old and we are monitoring aortic stenosis. We have our next appt in a few weeks (need to schedule it still).

When she had her first doctor appt at the hospital they heard a lot of noise and ordered an EKG and Echo right away. So we found out when she was about 18 hours old. We have been monitoring it since. We were told that she will probably need surgery when she is in her 20s. I'm hoping she wont, or if she does they will be able to do a less invasive procedure. She has all 3 leaflets in her valve - so my hope is technology will increase and somehow allow that 3rd leaflet to work. Either way, just looking at her you'd never guess - typical 2 year old. So, I guess thats got to be a good thing right? If she didn't have energy and such they would probably be very concerned.
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  #9  
December 10th, 2008, 07:38 PM
peimum's Avatar life blows sometimes.
Join Date: Mar 2008
Location: PEI, Canada
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Hi, I am Gwyn. I have 3 children Christian (12), Gabriella (almost 3) and Alina (14 months). I am also preggers with our last child. I am due April 12th. We recently found out that the baby I am carrying has Supra Valvar Aortic Stenosis. I will be delivering at a hospital that is 4 hours from home, making it really hard for DH to be there when it happens. I will be moving into the hospital at 36 weeks, so that they can pretty much have me there and not in the middle of nowhere. This is all still very knew to us, and we are just now learnign what it is all about.... so if anyone has experience with SVAS please share your stories!
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  #10  
January 12th, 2009, 11:20 AM
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Join Date: Jan 2009
Posts: 1
My name is Renea and I am the mother of 4, Jason is 10 ,Rebekah is 8 and twins Hannah and Owen are 4 1/2. Hannah is my heart baby! We found out when she was 5 months old that she had an ASD. She has always been way smaller than her brother... well after about 6 months old. Now he is 15lbs and about 6 inches bigger than her!! She just had a heart cath to repair the ASD in July and didnt awesome!! We go for her 6 month check up next week.
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  #11  
January 13th, 2009, 09:06 AM
stacyp's Avatar Mommy to Andrew & Luke
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Location: OHIO
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Welcome Renea!
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  #12  
January 13th, 2009, 12:51 PM
Cheep Sk8's Avatar Veteran
Join Date: Dec 2008
Posts: 212
My name is Laura. I have two children: Collin (7) and Kiersten (2). Kiersten is my heart baby. She was born on New Year's Day. She was 5 weeks early and weighed 4.04 lbs. While she was in the NICU they detected a heart murmur, which turned out to be Pulmonary Valve Stenosis. She had the catheterization and balloon dilation done in November of 07. As of her last check up, her valve was leaking just a bit, but they aren't terribly concerned at this point. My daughter also has a feeding tube for FTT and hypothyroidism.s, far as we know none of these conditions are related.

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  #13  
January 13th, 2009, 03:31 PM
stacyp's Avatar Mommy to Andrew & Luke
Join Date: Nov 2005
Location: OHIO
Posts: 17,229
Welcome Laura!
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  #14  
February 8th, 2009, 04:46 PM
*Firefly*'s Avatar Girlfriend and Blogger
Join Date: May 2006
Posts: 24,397
I'm Ellie, I am a CHD survivor and obviously i still live with it, I'm 20 and I was diagnosed with Transposition of the Greater Arteries and had my operation at 5 days old. I'm here to help with the bits the doctor cant tell you about.
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  #15  
February 8th, 2009, 06:22 PM
Mega Super Mommy
Join Date: Jul 2008
Location: Carroll Valley, PA
Posts: 3,168
I thought I had posted in here, but I guess I didn't!

I'm Janel, mom to Jude. He was diagnosed at one day old with a small VSD, and at 2 days old with Wolff-Parkinson-White Syndrome, and at 3 with an innocent flow murmur. He is currently asymptomatic, and seeing his cardiologist every 2 years. His VSD closed spontaneously around 4 months old.

I'm expecting our second little boy in May, and have a fetal echo set for this coming Wednesday to screen for any defects. However, since the WPW that Jude has is electrical and not structural...they won't be able to totally rule out all defects. This little guy will also have an echo and ekg in the hospital before we're dicharged to go home (which I think ALL newborns should get!)
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  #16  
February 9th, 2009, 01:16 PM
stacyp's Avatar Mommy to Andrew & Luke
Join Date: Nov 2005
Location: OHIO
Posts: 17,229
Janel, please keep us posted on the fetal echo.

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  #17  
February 10th, 2009, 01:22 PM
Newbies
Join Date: Feb 2009
Posts: 7
A cousin of mine was born with a heart disease in the early 70s. The wall of heart was too thin and it was determined it could not contain the pressure of the circulation system and would require surgery. Children's Hospital of Orange patched her heart up and gave her some time to live. It was not expected that she would live to be 20, but at least she could live for a while.

Her growth was stunted (she never reach 5 feet tall), but her spirit was overdeveloped to compensate. She was the happiest person always full of enough cheer to make everyone around her feel good. I mean ALWAYS, seriously, she should have been the spokesperson for Disneyland, she was the happiest PERSON on earth.

Well, she lived and lived on. She even got to have the experience of a huge cathedral wedding and lived in a happy marriage for a few years. But at the age of 25, the patch gave out. They knew it wouldn't last forever and it lasted longer than it should have, but we were all still shocked when it was time to say goodbye.

As it turns out, in her later years (yes the 20s were her later years) she wasn't very good about getting to the doctor regularly for checkups. It turns out, the blow-out might have been avoided if she had.

So, 2 things I guess I am trying to share with all of you with heart babys:
1) Times may be difficult for you, but the life being promoted will end up bringing you the most joy ever.
2) Without being paranoid about it, it's good to be supportive of check ups for your heart baby when they are grown. You all remember your teens and 20s, not the time in your life that you were the most responsible about doctor checkups right?

I would like to thank CHOC. The work they did 40 years ago provided me with a friend who made my life happier, and whose memory makes me smile still.
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  #18  
February 10th, 2009, 02:09 PM
stacyp's Avatar Mommy to Andrew & Luke
Join Date: Nov 2005
Location: OHIO
Posts: 17,229
Thank you for sharing your cousin's story, MyJoy.
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  #19  
February 1st, 2010, 02:42 AM
vincentsmom
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My name is Brittany and I just had my first child Jan 13th...a little boy named Vincent. Vince has ASD and will be having surgery to correct it when he is 2-3 years old.
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  #20  
September 4th, 2010, 08:46 AM
Lizas_mommy's Avatar mommy of two
Join Date: Oct 2009
Location: Pennsylvania
Posts: 325
My son was born on July 15, 2010 with Long QT syndrome which is also considered ventrical tachycardia at 2 days old. He is 7 weeks old now and is doing much better. He has a pacemaker and takes propanalol and mexiletine. This is a lifelong condition but its treatable and with meds he should be just fine.
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