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My sweet Angel
My name is Debbie and my son, Jayden, was born on June 17, 2011 with hypoplastic left heart syndrome and ventral septal defect. He has had one surgery about 1 month after he was born and had complications. He began to heal and got really sick again about 1 month ago. He just had the last surgery on October 26. It lasted 15 hours. But he is doing extremely well. He has amazed the doctors with how far he has come in such a short time.
I am hoping he can come home for the…
ContinueAdded by Deborah Vehec on November 8, 2011 at 10:59am — 2 Comments
Praying for my grandchild every minute of the day
Back in march of this year I got the news that any parent of a teenage girl dreads hearing. My 17 year old all star softball player is pregnant. I immediately started thinking about all the opportunities that were about to pass her by. Her and the father have known eachother since they were litttle and always said one day they would get married and have children. But I was concerned of their rocky relationship prior to this and they had just gotten back together not long before the news of her… Continue
Added by Kerry Blake on October 1, 2011 at 7:45am — 1 Comment
Anyone (a survived baby who now a married woman with kid/s)Having a Pulmonary Atresia Hypoplastic Right (or Left) Ventricle?
Yes, is anyone of you here who have survived when was a baby who now a married woman with kid/s, or a parent ---> having a Pulmonary Atresia Hypoplastic Right (or Left) Ventricle? Please let me know if you or are these or you know someone. Am still on state of adjusting the case of my precious one and only baby girl who was just born and had her BT Shunt, or first open-heart surgery days ago. I need some good vibes or some positive cases. It bleeds my hurt seeing and thinking about my baby.… Continue
Added by ABC Miles on September 28, 2011 at 4:46pm — 2 Comments
Customized Heart Images of CHDs
Hi! I'm Nanette from HeartBabyHome.
In 2008, my youngest twin was born with a complex congenital heart defect. I couldn't find a heart image anywhere that showed all her specific defects together. This made it harder to explain her situation to my support group. I started a blog and did the best I could to use similar images and explain their differences.
Last year I started a service that provides custom heart… ContinueAdded by Nanette of HeartBabyHome on April 27, 2011 at 4:00pm — 1 Comment
Let me tell you something about a broken heart.....
Added by Shannon Tucker on March 24, 2011 at 7:13pm — 2 Comments
How to manage and care for a G Tube site
We thought it would be nice to share our care process for keeping Amayah's g tube site clean and trouble free. We can't guarantee that our solution will work for you but it's worth a try if you are looking for g tube care solutions.
Amayah has had a g tube since she was about 6 months old (can't remember the exit date!). Heart babies tend to struggle with feeding and in retrospect this was a much better solution than the ng tube. Well we say better in bit of a selfish way I think (for… Continue
Amayah has had a g tube since she was about 6 months old (can't remember the exit date!). Heart babies tend to struggle with feeding and in retrospect this was a much better solution than the ng tube. Well we say better in bit of a selfish way I think (for… Continue
Added by The Lobos on October 16, 2010 at 12:04pm — 1 Comment
Adults living with Tetralogy of Fallot
I am 24 years of age and I was to my family a miracle baby. Because I was born with Tetraloy of Fallot, I was a blue baby and spent countless months in the hospital. I had my first surgery when I was a day old. Then at the age of three, four and again when I was thirteen. That was a year before my parents and I moved to Marion, Iowa where in 2006 I had my last surgery, most all my surgeries were open heart. I had one that was done from my back side but all the rest were mainly open heart…
ContinueAdded by Ashley Brooke Hummel on September 28, 2010 at 8:28pm — 2 Comments
Dear Jayne
Thks 4 the msg. I've not been here since I lost my baby in Jan. Doc advised to terminate the pregnancy. Until today I still do not know if that's the right thing to do. Anyway, life goes…
Dear Jayne
Thks 4 the msg. I've not been here since I lost my baby in Jan. Doc advised to terminate the pregnancy. Until today I still do not know if that's the right thing to do. Anyway, life goes on...
ContinueAdded by Veron Poh on September 2, 2010 at 5:41am — 3 Comments
Reece's Rainbow
Ever heard of Reeces Rainbow??? It is a non-profit adoption agency trying to get kids with special needs out of orphanages and institutions in Europe/Asia. Most of these kids get no medical treatment and live their short lives in tiny cribs. So sad, as many of of these kids have minor issues, easily treated here in US/Canada.
Although international adoption can be very costly, Reece's Rainbow does a wonderful job of fund raising, helping families to bring home their kids with as much… Continue
Although international adoption can be very costly, Reece's Rainbow does a wonderful job of fund raising, helping families to bring home their kids with as much… Continue
Added by Kim Knipp on June 4, 2010 at 9:57am — No Comments
Ryders Tetralogy of Fallot Surgery
Cardiology pre-check up
Tuesday March 16th 2010
Started with usual weight (7.72kg), height (72cm) and Oxygen Saturation Levels (93%).
Went to see nurse who organises trip to Melbourne. Went through flights, accommodation, cab fares and waiting list for Ronald McDonald House. When Ryder is ready to come home they arrange everything too. Saw Dr R and he checked Ryder to make sure he was fit and healthy and ready for surgery. We got a good luck and Ryder got a Teddy and… Continue
Tuesday March 16th 2010
Started with usual weight (7.72kg), height (72cm) and Oxygen Saturation Levels (93%).
Went to see nurse who organises trip to Melbourne. Went through flights, accommodation, cab fares and waiting list for Ronald McDonald House. When Ryder is ready to come home they arrange everything too. Saw Dr R and he checked Ryder to make sure he was fit and healthy and ready for surgery. We got a good luck and Ryder got a Teddy and… Continue
Added by Matthew Coscia on April 29, 2010 at 9:00pm — 3 Comments
"Blessings To The Kids and Their Families!!"
Hi, I am Debbie Moore RN in the Neonatal ICU for over 30 years. I actually just bumped into your site by accident when I was trying to get on my own website www.NetworkingByHeart.com!! What a beautiful group of people you are!! We lost our own baby to Sudden Infant Death Syndrome in 1991 and have a son Sean who is nearly 17 and has Down Syndrome, and a 13 year-old daughter Amy that I tease is our real challenge...…
ContinueAdded by Debbie Moore on April 26, 2010 at 2:00pm — No Comments
CHD Jewelry - Help Spread the Word!
Hi!
I came across this site today. I have a 2 year old daughter, Cassidy, who was born with Tetralogy of Fallot w/ PA & MAPCA’s.
I think this is a great way to get the word about about CHD’s and I commend you for what you’re doing.
My wife and I are also on a mission to spread the word about CHD’s. We just started a jewelry company called Lucky 10. All of our products are…
ContinueAdded by Traci Lisa on March 1, 2010 at 5:05pm — 1 Comment
Hey =)
Hey everyone =)
My Name is Sarah, and i was born with truncus arteriosus-type 2 (with the conduit and VSD), VSD, and 2 murmurs,
I have had 3 big heart operations, one of them being an aortic valve replacment, so this means i am on a anti-coagulant for the rest of my life =/ At the minute im on one called inoheparin tinzaparin or heprin for short =)
But previously i have been on warafrin and phenidione (I think thats how there spelt =P) but they…
ContinueAdded by Sarah Mckain on February 27, 2010 at 1:05pm — 1 Comment
Amniotic Test is Out
My amniotic test has shown that my baby is normal so at least we have passed one hurdle. It is another long wait for the next genetic scan on 6 Jan to see if there is any improvement on my baby's heart. What is most disheartening is that I did not have the support of my mum who seems to be pessimistic about the entire thing. Even my close friends and sisters are helping to pray for my baby. Let's just hope there is a sliver of chance for my baby to survive the ordeal and let me and Steve become… Continue
Added by Veron Poh on December 16, 2009 at 10:26pm — 1 Comment
What is Fallot Tetra?
My baby was diagnosed with Fallot Tetra when Steve and I went for the genetic scan on 16th week of pregnancy. The news totally shocked us for the following weeks to come. Immediately, I had to undergo amniotic test and now is the long wait for the results. We just don't know what to say to comfort each other now... next update on 10 Dec.
Added by Veron Poh on December 3, 2009 at 4:15am — No Comments
Ryders story so far
Ryder was born on Sunday 12th April 2009 (Easter).
On the 22nd of December 2008 Ryder was diagnosed with a congenital heart defect called Tetralogy of Fallot (TOF) at his 20 week ultrasound.
We also have a facebook group (see link below)
http://www.facebook.com/group.php?gid=54421280913&ref=ts
This group is for us to share our story with family, friends and anyone who is… Continue
On the 22nd of December 2008 Ryder was diagnosed with a congenital heart defect called Tetralogy of Fallot (TOF) at his 20 week ultrasound.
We also have a facebook group (see link below)
http://www.facebook.com/group.php?gid=54421280913&ref=ts
This group is for us to share our story with family, friends and anyone who is… Continue
Added by Matthew Coscia on December 2, 2009 at 9:39pm — 1 Comment
Have faith and courage
Dear children and parents or relatives,
I was born with Tetralogy of Fallot and had two surgeries. I was blessed by the magic hands of two surgeons. The first, Professor Filipozi in Brazil, saved my life with a Anastomosis surgery in 1958. The second, Professor Senning in Zurich,Switzerland, gave me my new life in 1967. I am now 58 years old and want to tell you all to be brave and have faith in the future. Live long with a loving heart.
I was born with Tetralogy of Fallot and had two surgeries. I was blessed by the magic hands of two surgeons. The first, Professor Filipozi in Brazil, saved my life with a Anastomosis surgery in 1958. The second, Professor Senning in Zurich,Switzerland, gave me my new life in 1967. I am now 58 years old and want to tell you all to be brave and have faith in the future. Live long with a loving heart.
Added by Paulo Fabricio on November 12, 2009 at 11:58pm — 1 Comment
Needing some advice
Hi it's been awhile since the last time I was on here. After Eve's surgery back in August we focused on her studies. She was homeschooled for a while, but now she attends her 1st grade class regularly. While waiting for her sternum to heal completely, she was on a no activity order from the doctor til her next check up (Oct 27th). At her latest appointment we found out that her pulmonary valve is dialating. So instead of getting her no activity order lifted, it has been extended. Eve is really… Continue
Added by The Myricks on November 3, 2009 at 1:37pm — No Comments
Been away for a bit!
It's been trying over the last few months to say the least. Amayah went through a risky BAS procedure and then got her G Tube put in. Soon after she started vomiting up yellow bile and after a 6 hour stay at Sick Kids emergency we found out that the tube was blocking the passage way between her stomach and intestine. They had to re-position the tube 9 days after it was put in and they did it with any sedatives so our baby was not very pleased. On a positive note she is putting on a nice bit of… Continue
Added by The Lobos on October 14, 2009 at 5:24pm — No Comments
Damn you Ativan and Methadone!
We were sent back to the hospital on Wednesday for a loss of 5 grams. Once we got there it turned out that the cause could have been withdrawal from her two med's that we are trying to ween her off of. Has anyone have any experience with weening their child off of either of these med's? It has been a huge challenge to say the least.
Also, we discussed with the doctors about a G-tube-- anyone have this put in yet? Allie is 2 months old, and will be going in for her Glenn Shunt at… Continue
Also, we discussed with the doctors about a G-tube-- anyone have this put in yet? Allie is 2 months old, and will be going in for her Glenn Shunt at… Continue
Added by venus wallis on September 12, 2009 at 1:52pm — 2 Comments
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Latest Blog Posts
- My sweet Angel
- Praying for my grandchild every minute of the day
- Anyone (a survived baby who now a married woman with kid/s)Having a Pulmonary Atresia Hypoplastic Right (or Left) Ventricle?
- Customized Heart Images of CHDs
- Let me tell you something about a broken heart.....
- How to manage and care for a G Tube site
- Adults living with Tetralogy of Fallot
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