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August 17th, 2011, 02:55 PM
yeahokay31's Avatar Mega Super Mommy
Join Date: Jun 2010
Location: NYC
Posts: 1,095
I don't know if there is anyone left on this board, but here it goes.

My name is Ness, my daughter Elisabeth was diagnosed with an ASD yesterday at the age of 6 1/2 months. It does not seem severe and the only step the pedi cardiologist is taking is a repeat of the ekg & echo two days after her first birthday. I'm not happy about this, this wait and see if they close on there own mentality, not to say I want them doing any procedures on my baby, its just that I feel so helpless. I want to seek a second opinion in a few months just so the tests can be repeated sooner. I haven't decided on that one yet, my only reserevation is putting Elisabeth through more testing then needed.

Reading some of your stories makes me realize how bad things could be, and I should be and grateful and I AM grateful the (3) holes are small, but still I am terrified for her. Its like i got punched in the gut and I say "ouch" and the response is "why are you saying ouch, you didn't break any ribs..." I dunno if that makes sense, but that is how i feel.


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September 6th, 2011, 08:57 PM
SmilesAreContagious's Avatar Rheanna Mommy-2-b
Join Date: Mar 2011
Location: Los Angeles County, CA
Posts: 2,643
Yeahokay31, I am so glad to see that you have posted so recently!

I am brand new to this board. My name is Rheanna, I am a regular member of the Jan DDC. I am expecting my first child, a little boy, his name will be Carson Nicholas, and he is due Jan 1, 2012. Right now I am 23w2days pregnant. I went in on Aug 29, 2011 for a fetal echo and they found two abnormalities. One being VSD and the other coarctation of the arota. According to the doctor at the u/s place Carson will need surgery to fix these abnormalities. We wont know how sever the are exactly until he is born so he could need surgery the day he is born or it could wait until he is a month or so old.
Carson Nicholas My heart HERO
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September 13th, 2011, 04:12 PM
Hazel's Avatar Mega Super Mommy
Join Date: Jan 2011
Posts: 2,679
My daughter was born four days ago and after detecting a heart murmur, they ordered a consult with the pediatric cardiologist who diagnosed her with a medium ASD and a large VSD. She has a repeat EKG and echo scheduled at three weeks old to see what treatment plan they want to follow
Mom of S, B, and Iz
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March 4th, 2012, 05:04 PM
Beccaboo's Avatar Mega Super Mommy
Join Date: Dec 2004
Location: Prince Edward Island, Canada
Posts: 1,321
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Hello, my name is Becky and my DS Ashton is my heart baby! He was born on April 23rd, 2007 and was diagnosed with Total Anomolous Pulmonary Venus Drainage with an ASD (they said the only reason he lived was because of the ASD). He was air lifted to the IWK in Halifax when he was 2 days old to be assessed by the heart specialist and had to have his surgery in July (2007). I was told the surgery would take a little more than 8 hours and he would be heavily sedated for 24 hours. I was also told he would have a long recovery time and that he would be slower to reach milestones than other kids his age. After 2 hours of being in surgery they were finished and when I got to see him about 30 minutes later he opened his little eyes and looked right at me. We spent four recovery days at the hospital and then I drove him back to PEI (about a 4 hour drive) in the car and he has been the most active fun loving child since. He has excelled at everything he does, started walking at 10 months old.. (7 months earlier than my daughter) and other than the huge scar on his chest you would never know he had to have surgery. I even forgot to mention it to his daycare and when they seen the scar they kinda freaked out a little bit.

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March 4th, 2012, 11:46 PM
Hazel's Avatar Mega Super Mommy
Join Date: Jan 2011
Posts: 2,679
I am so glad your son responded so well to his surgery and repair! I hope my little girl has such a great outcome with her upcoming OHS
Mom of S, B, and Iz
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July 11th, 2012, 08:53 PM
geogeek's Avatar Marsi's Mommy
Join Date: May 2009
Location: In yonder mountains
Posts: 9,339
I guess I never introduced myself. I am Rachel. I only have 1 daughter Marsi who is my heart baby. She was born at over 9 lbs and had to stay in the hospital for 5 days after birth due to unexplained fever. She was always good, healthy and thriving so our doctor didn't really worry about her small heart murmur. The pedi started getting a little bit more worried when it was still there at 2 months but wanted to give her until her 4 month appointment since Marsi was non-symptomatic for heart problems. Hind sight is always 20/20 and she WAS symptomatic. She made little noises that I thought were "cute little squeaks" that were actually her not breathing well. She slept...a lot. She was always sweating (in winter). It makes me feel horrible to think back on it and know what I should have seen. At her 4 month visit, the murmur got louder and we were sent to a cardiologist for an EKG and echo. It was serious enough they scheduled it for 3 days after the pedi visit. Marsi had an enlarged heart because of a large PDA. Since they thought it was larger than normal, we opted for surgery. It was scheduled for 10 days after the diagnosis. That surgery was canceled for a sedated echo to ensure there were no other problems that needed to be fixed since they were going in anyways. Luckily, the PDA was the only immediate concern and the surgery was scheduled for 3 days later. On March 26th, 2 days after turning 5 months old, she went into surgery. We were glad that we did the surgery instead of the cath procedure because it was a very, very large PDA. The coil they use in the cath wouldn't have worked and she would have needed surgery regardless. She also has an ASD that we are hoping and praying closes on its own by the time they want to see her at 3 years old.

Thank you *kiliki* for my beautiful siggy!

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March 5th, 2013, 08:19 PM
Join Date: Jul 2012
Posts: 820
Name is Dianna. My daughter was born on 3.7.9 w/ VSD, PDA, ASD, Bicuspid Aortic Valve, enlarged heart, and the worst...Pulmonary hypertension.

She had surgery at 3.5 months to correct the VSD and PDA. We were hoping it would cure her PH, but it didn't...

She'll be four in a few days and has been doing great overall. She takes Traleer and Lasix to manage the PH.

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March 10th, 2013, 09:07 AM
Orangebrittainy's Avatar Queen of Randomocity
Join Date: Jun 2009
Location: Small Town NC
Posts: 4,817
I am Brittainy, I don't technically belong on this board as my child does not have a CHD... However I was born with a Bicuspid Aortic Valve and had my surgery Sept 2010.

Thank you *Kiliki* for once again doing such amazing work on a siggie
I can do all things through Christ which Strengtheneth me. (Phil 4:13)

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October 17th, 2013, 09:50 PM
PrettyMommy's Avatar Mega Super Mommy
Join Date: Nov 2006
Location: Nevada
Posts: 2,949
I'm Kesha a SAHM of 4 and my dh and I are expecting baby#5. My current baby boy I'm carrying has yet to be officially diagnosed but I am suspecting aortic stenosis and he also has a leaking valve. I had my first appointment with the pediatric cardiologist today who discovered the leak and confirmed the under developed vessel going to the left side of his heart. We sit down with him in a week to discuss actual diagnosis and options. I am terrified and unsure. He did not sound positive today during our appointment and I'm just waiting to see what he officially has to say. Other then my sons left side of his heart not developing correctly he seems to be healthy in all other area's. I am told I need to deliver at the hospital directly attached to the children's hospital here in my area that specializes in pediatric cardiology. I am just praying our baby boy is ok.

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