Welcome

Jessica - posted on 09/01/2010

It's so nice that someone started this. It helps to have people who understand what you have gone through or will go through! My daughter was born Decmber 10th, 2009 and they told me she had a heart mur mur, which then turned into a VSD and the added an ASD, and last an over developed valve. So when she was 5 months old (May 10th, 2010) they preformed surgury on her heart. It was very rough for our family, but we got through it together. Now she is so much better. She still has a small risk of needing another surgury because of the valve they opened, because the artery behind it was smaller because it didn't have to transport as much blood as a normal baby would, so we still need to see speicalists of course to check everything every once in a while, but so far all is well! We thank all the wonderful people who took care of our baby when she was at Marshfeild Clinic Hospital in Marshfeild, WI. We also thank God everyday that we get to spend with our loving daughter. Thank you so much for this page. I hope someday they can find what causes this in babys so no one else will have to got through these hard challenges.

Leona - posted on 08/14/2010

Hello,
So nice to see other Moms who have been where I have. My Jimmy was diagnosed at 9 months with congestive heart failure due to an extremely large VSD. He was always small for his age but just chalked it up to me having a 2 vein cord, and him only being 4lbs 9 ozs when he was born. He was due to have surgery 1/6/10 but got RSV and they postponed it til 2/17/10. I wish I would have found you ladies then. That was the longest 6 weeks of my life. He had his surgery in February and is a totally different boy since. He was standing up in his crib in ICU the day after surgery. He started laughing like never before. He had his surgery at the OU Children's Hospital in Oklahoma City, Oklahoma. Thank you ladies for letting me share my story, it is very cathartic.
Leona

Angela - posted on 07/01/2010

Hi
Angela here, mum to Jake. Jake has Down syndrome and at 4 moths had a full avsd repair and further mitral valve repair after complications at 5 months. Now he's 2 and 1/2 and nothing slows him down. We are from County Mayo Ireland and spent 7 months in Crumlin Childrens hospital as he needed to be on IV milrinone for months before surgery. His heart had stopped beating on one side so the meds were used to improve heart function to the point where he was fit for surgery. Thought I'd add that in case anyone else has the same problem and wants advice.

Anyone need to rant/cry/share great news/laugh about dire circumstances as you only can with "those who get it"...I'm always here.

Angela xxx

Angela - posted on 06/15/2010

Hello all : )

My name is Angela, I have 2 daughters. Ivy who will be two next month, and Lily who is a little over 3 months old.

When I was 6 months pregnant we found out that Lily was going to be born with a heart defect called Hypo-plastic Left Heart Syndrome. She was born on March 3, and on the 8th she had open heart surgery. Only the first of 3 that she will have to have over the course of two years. The next one will be around the end of August and the last when she is around 2 years old.

She is a strong little girl, and has been doing amazingly well, for having such a hard life so far.

Thank you for starting this page. It's so nice to see so many mothers who have gone threw, and are still going threw the same things that my family are. : )

Kim - posted on 05/25/2010

When I was 6 months pregant The doctor said there is a problem. They said that my son had a heart defect. I thought that my world was ending.But on Dec.5th 08 my son Eli was born with a double single inlet ventricle hypo plastic arorta and trasnsposition of the great vessels. He was acutally due on december 25 but we were planning on taking him the week before christmas. I developed pre clampsa and they had to enduce me.

They Sent me to OSU Medical Center in Columbus to have my son and they told me that as soon as he was delivered Eli would be transferd To Nationwide Childrens Hospital in Columbus Ohio. My husband went with Eli arcoss town and my sister stayed with me.

2 hrs after Eli was deliverd they took him right away and took him to childrens. his first Surgey was when Eli was 8 days old and his second surgey was may 5, 2009 and we are now getting ready for his third Open Heart This fall.

I dont like going to Columbus, Ohio at all I get severe Anxiety everytime I go. Its nice to kow that there are other moms out there that understand what I am going through. It has been lonely!! I felt like I had no support. Anyone want to chat email me

Heather - posted on 05/22/2010

Hi Barbara,

What did they repair in the surgeries? Everyone's experienec is a little different. I feel so lucky that my daughter only required one surgery and has never had problems since. She's now almost 17 months old and as happy and healthy as any other little girl.

Barbara - posted on 05/14/2010

I am new to Circle of Moms. How are all of your children doing? My son had his 1st surgery at 7 days then open heart at 18 days old. He is now 12 weeks today. I see that your children are all a little older then mine so it would be nice to hear this gets a little better. thanks

Heather - posted on 10/06/2009

I too am glad you started this. My daugher was born in Dec 08 with a Transposition of the Greater Arteries (TGA) as well as an ASD, VSD and PDA. She underwent surgery at 12 days at Children's Hospital in Vancouver, BC. We did not know prenataly, and so she had to be transfered from our local hospital where she was born, into the Children's hospital in the city. She was luck in that she was out only 10 days post-op. She has to go in every 6 months for the echos and ECGs, but so far everything has been great. They will watch her for narrowing of the arteries where they were repaired, and there is a small chance she may have to have one further surgery to open them up if they do narrow. Other then that, she will be fine, and has hit all her milestones at the approptiate age! I find it amazing, since going through this experience, how many other people I meet who have had similar experiences!

Skyye - posted on 09/28/2009

Quoting Jennifer:

hello, i am glad you started this. My son had open heart surgery in June to repair a ASD, VSD, and what they call a Double outlet right ventricle. He was born in Jan. and it has been an extremely rough 8 months. He had 2 surgeries and is doing wonderful now. It was very hard him being in and out of the hospital and him looking the way he did but he is doing great now. Now its just feeding issues and catching up developmentally but he is already improving on those so we are very lucky cause we definitely could have lost him and are very greatful to our wonderful cardiologist, surgeon, and staff at Riley Hospital for Children in Indianapolis, IN. Thanks for starting this, you are right when you say its a healing thing.

Hello there!!! How are you? Was just reading your little letter about your son. My son too had D.O.R.V. & V.S.D. He has had 2 surgerys since birth. He underwent corrective surgery in Feb 2008 (@ age 4) and it was a very difficult thing to go through. It is as you know a very hard thing to see your child in such a state after surgery. Alot of people do not understand what it is like until they go through it themselves. I would not wish this on my worst enemy. I have wanted for so long to be able to relate with someone other than my Hubby and my Mum, about this process.

My husband and I found it hard during our sons first procedure and asked my mum to help us out with the second. After his first op ( @ 9 weels of age) I ended up in hospital for the night as I was extremely stressed and was unable to leave him for five mins to look after myself.

We found out that Jaydan had a heart defect at 18 weeks gestation, this was so upsetting and we were beside ourselves with worry as to what to expcet when our bundle of joy was to arrive. They prepared us for the worst saying he may come out bluer than other babies and may require oxygen etc. But when he was born the little bugger was great, not too much to worry about. I on the other hand was a complete wreck and so ill.

But now a year and a bit on he is fighting fit, he used to get every cold and illness going around. Dont get me wrong he still gets sick but not as much as he used to. He is about to start big school after xmas and is very excited about this. He will be 6 in June.

I hope your son is still going strong and doing well. It is hard but things have a way of working out.

All the best

Skyye

Monika - posted on 08/26/2009

My daughter, Madison, was born on 07/08/09 with a coarctation of her aorta and a leaky tricusbid valve. She underwent surgery just 10 days after she was born at the Columbia Childrens Hospital in New York City. We didn't know prenataly that there were any defects so at birth she turned blue and was rushed to another hospital an hour away. Now she is finally home but we have to go every few weeks for EKG's and EKO's to keep an eye on her tricusbid valve and hope she will not need any further surgeries. So far the coarctation is gone and hopefully will not return as she grows. It is nice to know that there are other mothers that are going through the same thing or have been through the same ordeals as we have. Thank you for starting this page.

Jennifer - posted on 08/26/2009

hello, i am glad you started this. My son had open heart surgery in June to repair a ASD, VSD, and what they call a Double outlet right ventricle. He was born in Jan. and it has been an extremely rough 8 months. He had 2 surgeries and is doing wonderful now. It was very hard him being in and out of the hospital and him looking the way he did but he is doing great now. Now its just feeding issues and catching up developmentally but he is already improving on those so we are very lucky cause we definitely could have lost him and are very greatful to our wonderful cardiologist, surgeon, and staff at Riley Hospital for Children in Indianapolis, IN. Thanks for starting this, you are right when you say its a healing thing.