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Jennifer - posted on 09/23/2013

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Hi my nameis jennifer my little girl is nevaeh she was born 5weeks early at 3lb 7oz she was is the hospital for 21days and released small but healthy with a heart murmer believed to be innocent 6months later she was sent to childerns mercy hospital n diagnosed. with asd they decided to follow up in another 6 months that eas september the 4th of 2013 we went in believing the hole was closing and she would be able to have it pluged thru a vain in her leg we found out that it isn't clising and in another long year she is looking at open heart surgery. I'm having a very hard time with this. I'm worried that they might possable find more complications when they open her up and I'm very scared. just hopeing to find someone who might be able to put fears to rest

User - posted on 12/07/2011

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hi my name is Jessica my son was born at 25 weeks he his pd closed at 4 weeks old then at 6 months he had open heart surgery to close a vsd cos he heart was so small cos he was so prem they couldn't get 2 the vsd so left it and put a band around his pulmonary artery to stop his lungs being flooded he went in for his 2nd open heart surgery in august he had the band took off and the vsd close after surgery was ill ended up with a bad bleed and a collapse lung the op took 8 hours after tat they done a scan and found the patch they put over the vsd was leaking both ends they found a new vsd right at the tip off his heart and his pulmonary artery is blocked so they will be more ops hes now 19moths weighs 22lb and is doing good

Cheyenne - posted on 11/15/2011

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My name is cheyenne, Im 23 weeks and my baby girl just got diagnosed with heterotaxy/ maltoration, The dr's say she has 0-20 % chance of living after birth, Though I think they're wrong. Have any of you been toled this?

Rachel - posted on 10/21/2011

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Hi Brittany, I just read your post and wanted you to know that I will be of any help that I can. It helps to have someone who knows the fears that come along with being a heart mommy. How is your daughter doing?

Brittany - posted on 10/19/2011

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hi my name is brittany i have an 11 month old daughter named angeline when she was 3 months old she was hospitalized for almost a month due to RSV she was intubated as well and we also found out she had pulminary stenosis the heart doctor said for months that her heart mur mur had sound the same but just a few days ago her doc said it had worsened im so afraid of whats going to happen i need advice

Rachel - posted on 10/15/2011

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Hi Everyone, my name is Rachel Munsch. My heart baby is Mason. He is now 5 years old and he would be telling me to stop calling him my baby if he knew! Mason has ASD and pulmonary atresia. We live in a very small town, so Mason was taken to Children's Mercy Hospital in Kansas City MO. He has had 2 balloon procedures, 1 closed heart surgery to put a shunt in, and 1 open heart surgery to remove the shunt, repair some damage, and they removed his pulmonary valve completely. Mason is not done yet. When he is around 7-9, he will have another open heart to replace the pulmonary valve and repair the ASD. He had a very enlarged right ventricle, so we had to watch that over time to make sure it went down. They left the ASD there this whole time, because Mason needed the hole to help him, but we will fix that with the next surgery. He currently is doing very well. We are very active with our community Heart Walks where Mas is a huge hit. Probably because he is the youngest survivor there, or the cutest! :) I want to be a part of this circle because if I can just help one mom by listening to her then I will be very happy. In 5 years, this is the first time I have really talked about it to anyone who "gets" it. I try and talk to people, but they will never understand what we go through.

Tara - posted on 09/11/2011

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My name is Tara and we live in South Carolina. My son was dx with Aortic Valve Stenosis at 6 month old. Wth tx of possible valve replacement. We have been blessed. Only 1 sx at 6mo for unrelated matter (huge hernia in utero) Hope to talk with more moms who understand the worries. No defect is "minor" in my opinion.

Emily - posted on 09/06/2011

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My name is Emily Jordan. I am the proud mother of Keely. She was born on June 15, 2011 with Hypoplastic Left Heart Syndrome, Ventricular Septal Defect and Pulmonary Stenosis along with Heterotaxy Syndrome. My daughter Keely has had 1 cath procedure thus far at 13 days old and surgery for the G tube placement. She was scheduled to have her 2nd cath procedure today but it is rescheduled for tomorrow, Sept. 7th. Keely has been in the CICU since she was born and she will be 3 months on Sept. 15th. It has been a long journey but we hope and pray for the best.

[deleted account]

Hello my name is Cassy and I have two awesome kids. My three year old son had heart surgery in June of this year and I am trying stay plugged in to all info and advice for kids with heart issues. New info comes out all the time and I want to be as informed as possible. My son is doing so well, his surgery was smooth. We may have to replace a valve someday but for now we are all happy.

Amy - posted on 02/26/2009

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Hi Sorry I didn't realize I should post my intro here. I guess I'll try it again lol! My name is Amy and I am momma to 2. Ava is 3 and Christian was just born a few weeks ago. My daughter was born w/ pda, pfo, asd, vsd, gerbode defect, narrowed aortic arch, and other smaller heart probs. She had her open heart surgery to repair gerbode defect and subaortic membrane (asd,vsd closed on own). Maybe I will post my full story sometime but for now I just wanted to meet everyone and say hi.

Tina - posted on 02/26/2009

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Hi, my name is Tina and my daughter was born with a vascular ring, it has since been corrected but has left some issues that we are still discovering.

Rachael - posted on 02/16/2009

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Hi, my name is Rachael. I was born with a Ventricular Septal Defect (VSD). I'm now 26, married to the best man in the world, and pregnant with our first child, a son, who is due May 20th. My OB ordered a level 2 sonogram at 18 weeks because of my history of a heart defect. We found out then that Luke's heart is very enlarged and we were sent to a fetal cardiologist to find out why. Our cardiologist told us that Luke has a non-classical form of the heart defect Ebstein's Anomaly. In the classical form, the tricuspid valve is placed wrong, making the chamber smaller. In Luke's heart, the valve doesn't work at all, causing severe regurgitation into the neighboring chamber, causing the chamber to be severely enlarged. In addition he has fluid built up around the heart, and the pulmonary artery is very restricted and small, disallowing his blood to get to the lungs to get oxygenated. On our second visit with the maternal fetal specialist, the doctor said his heart is so enlarged that it was unlikely that he would make it to 25-26 weeks of pregnancy. I'm pleased to say that I am 26 weeks and 3 days, and Luke is not showing any signs of distress yet. Our next cardiologist appointment is in 2 days and we'll know more then.

User - posted on 02/13/2009

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Hi, my name is Katie, and my daughter Jozie was diagnosed with cardiomyopathy in October 2007. By November Jozie received her brand new heart. My prayers go out to everyone one of you that has had to deal with this all of our child's lives with so many surgeries. Jozie is strong and trying to cope with life as it is now, along with the complications that come with the medicine, and there is a lot of it. My wish is that I can give hope to people that find themselves heading in this direction. Feel free to contact me. Much Love.

Annalie - posted on 11/21/2008

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My name is Annalie Meyer. My son, Matthew was born premature and had lots of lung problems. He was 18mths old when we found out he had a heart problem. he had a severe narrowed aorta and this caused high blood pressure. He had to undergo coarctation of the aorta a week later. he also has only 2 aortic valves. he is curently on high bp meds. we are going for his check up on 29/11/08.

Cassie - posted on 11/12/2008

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Hi All! My name is Cassie Shields and I have two children. Ethan who is 5 and Marlena who will be 3 next month. Marlena was diagnosed from birth with Hypoplastic Left Heart, Mitral atresia and Pulmonary atresia. She has undergone three surgeries shunt placement, Glenn and Fontan procedures at Nationwide Children's Hospital in Columbus, Ohio. The last surgery was a year ago September. She seems to be doing well, they found a small leak and some enlargement on the right side of her heart at her last appointment in August. At this point we are just waiting and watching!

Karen - posted on 11/12/2008

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Hello to all of you and let me say that I am very pleased to meet you. I am the adoptive mom to my twin boys that are turning 4 in February. One of my twins was born with TGA and had surgery when he was three days old. He spent the first 33 days in the hospital. The surgery, as we were told when we met the boys at 8 mos. of age was a success but since have found (from two previous cariology appointments) that both valves are leaking, that there is also a hole and he has a murmour. I wish that I had been there when he was born as i feel that I don't have enough information about this condition and live with the fear that if I don't make his diet, environment and daily routine as perfect as can be, that we may loose him.



This same little boys has several other disablities as well as fears / phobias and it has been suggested that some of these conditions could be the result of the lack of oxygen from both the birth process and surgeries. Is anyone also seeing or hearing similar comments or are seeing any other conditions that may have resulted from TGA?



My little boys were exposed to much drugs and alcohol during the pregnancy so it is our belief (and we are still waiting for their assessments to be completed) that some of our issues are due to the exposure with the exception of the heart condition as I am convinced that thsi disability must have been caused by nature (??)

User - posted on 11/10/2008

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Hello, My son was born in November of 2007. My ob noticed that Izaiah had a heart murmur and set us up with a cardiology appointment to follow in two days. We got to bring him home for two perfect days. On December 5th,2007 he was diagnosed with a narrowing of the aorta, a large vsd, and several small asds. He also has a faulty pulmonary valve. He had his surgery on December 11th, 2007 to repair the Narrow of the aorta and the holes. His surgery went great until they were rolling him back into the ICU and his breathing tube clogged, his right lung collapsed. When they let us in to see him we were not allowed in his room. They were still stabilizing him, they said, it could take up to 12 hours to get him stable. Four hours post op he went into cardiac arrest and acute kidney failure. I got the dreaded phone call to come back to the hospital because my son wasn't doing well. They did compressions on him for 15 minutes before bringing him back into the OR only to discover that the clotting powder used during surgery clumped under his tiny heart. It couldn't beat against it any longer. My husband and I agreed to have him placed onto life support. The first few days his heart barely pumped. The doctors said, that was normal for the heart to take a rest when all the work for it was being done. Izaiah was getting stronger and was able to come off of life support after 6 days. Things were looking up. Two weeks post op they closed his chest. That's when the troubles began again. Izaiah developed a condition called chylothorax in which the nutrients in the vessels pour into the chest cavity. His chest tubes were accidentally removed by a resident doctor and not replaced which sent him into a full blown respiratory distress. He was intubated the entire time. He had 4 full on respiratory distresses during his hospital stay. The chylothorax lasted over 3 months. Another chest tube was left out over a weekend and when they tried to put it back in they punctured his left lung. I was told to go in and say goodbye to my son yet again. He was on full respiratory support and with the punctured lung the doctors didn't think he would make it. I went in and told him to fight just as I did when he was on life support. He had three thoracic duct surgeries to try to heal the vessels that were out pouring chylothorax. Due to the TPN usage his liver was enlarging and nothing was looking up. The doctors wanted to put in a trach and do a G-tube surgery. I said, no. He came to the hospital for one surgery and has already had 7. I wasn't about to do two more. I knew he could breath, he came into the world breathing without complications. He just needed more time. I only held him 3 times during those first 3 months. My son eventually got extubated and the fluid finally stopped pouring into his chest. We spent 5 months in the hospital 4 months in the ICU. It's been a long scary road for us. When we left the hospital my son couldn't even lift his head up from the bed. Now 6 months later he is crawling and getting into lots of trouble. He does face another heart surgery as well. We see the cardiologist every month to see when that dreadful day may come. I took pictures of him everyday and created a video of his journey. Feel free to view his video. youtube.com/watch?v=ciuPkjYQPeQ

Jennifer - posted on 11/09/2008

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Hi my name is Jen Hollidge. I have 2 daughters- Riley 5 and Teagan (heart healthy) 1. My oldest Daughter, Riley, was born in July 2003 with a VSD, PDA, PFO (similar to ASD) and pulmonary stenosis. We found out when she was 5 days old- a complete surprise to us! When she was 8 weeks she had open-heart at Boston Children's hospital and has been doing great ever since (though we did struggle with eating and growth issues and LOTS of colic). She is still petite for 5, but very healthy, and visits her cardiologist yearly. She does gymnastic twice a week and amazingly has more energy than the rest of us put together:)

I am excited to meet everyone and glad to have found this group!

Trisha - posted on 11/07/2008

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Hi - My son Ryder was born 6/7/04 with TGA. He had the arterial switch operation when he was 4 days old (at All Children's Hospital in St.Pete, Fl). Due to some complication during the surgery his diaphragm was paralyzed. He had a diaphragm plication done about a week later. He's doing well now. He has a slight leak in one of his valves but our cardiologist isn't concerned at this point.



I look forward to getting to know all of you!

Jenny - posted on 11/07/2008

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Hi I'm Jenny Bernard. My daughter Emmie was born in July 2007 with a large VSD which caused secondary pulmonary hypertension. The VSD was closed through open heart surgery in January. The pulmonary hypertension will go away with time as she grows. She is still dependent on a little bit of oxygen for naps and at night, but if not can go without. We are located in Toulouse, France, where Emmie was operated at the Pasteur Clinic.

Julia - posted on 11/07/2008

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Sending a hello to Jessica Steel, Jessica Cornelius, and Sherri - we look forward to getting to know you!

Andrea - posted on 11/06/2008

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Really glad to find this group. Joined FaceBook in hopes to find a group such as this.

My name is Andrea. I have two little girls. A healthy 4 year old and a 13 mos old with a variant of HLHS (Shone's Complex to be exact). We are undergoing the 3 stage single ventricle repair at Children's Hospital in Oakland. Amanda, my heart baby, has undergone the Norwood & Glenn and 5 heart caths to correct a pesky aortic arch. We are finally in good shape from a heart stand point!

Julia - posted on 11/06/2008

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I wanted to say a hi to Caryn and Mrs. Krueger (guessing here as I went off the kids names) and extend a welcome - we'd love to hear from you and get to know you!

Julia - posted on 11/06/2008

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Hi Peggi - long QT syndrome isn't one I am very familiar with - would you mind explaing it a bit more? So great to hear that he is doing so well! :-)

Peggi - posted on 11/06/2008

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My son was diagnosed in 1993 with Long QT syndrome. A couple of years ago he had a pacemaker/defibrillator and is now 25 and doing well (fingers crossed)

Laura - posted on 11/03/2008

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Hi! My daughter was born 1/18/08 with a large VSD, an ASD, and PDA - which was all repaired in one big swoop on 6/19/08. We are now 4.5 months post op and seem to be doing well. We had a small scare in August where it looked like her right ventricle was thickening and building muscles into her ventricle, and where her left side was still enlarged. Her weight gain started dropping off again and in October we were prepared for the worst, but surprised with good news... things seem to be getting better. We are from KCMO and use Children's Mercy hospital. I have a carepage (page name lilygrace2) and a blog at www.lilliansheart.blogspot.com. Look forward to getting to know you all better!

Julia - posted on 11/03/2008

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Hello, my son was born in 2005 with Transposition of the Great Arteries (TGA). We didn't find out about it until he was 10 days old and we nearly lost him. He had heart surgery at Emmanual Children's Hospital in Portland, OR when he was 14 days (Easter Sunday). He is doing great - his next heart appt is this coming year.

Ruth - posted on 10/31/2008

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Hi Amy,

My heart child, Ewan, was born in January 2004. He has tricuspid atresia and has had the 3 surgeries for single ventricle repair: BT Shunt (6 days old), Glenn (6 months old) and Fontan (2 years, 9 months old). He had his fenestration closed just this summer and is doing great. Last O2 check he was 94%! We use Boston Children's Hospital.



How is your son doing?

Amelia - posted on 10/30/2008

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My name is Amy Boomker, and my older son has Hypoplastic Left Heart Syndrome, HLHS. He was born Feb 2005 and he has had four heart surgeries at Hope Children's Hospital in Oak Lawn, IL (a Chicago suburb).

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