Let's get to know each other

Elizabeth - posted on 12/17/2008 ( 23 moms have responded )

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I am one that likes the smaller groups. I find it is easier to get to know people. Would ya'll like to start and introduction thread to get to know each other better?



My name is Elizabeth. I have 5 children and 3 of them have congenital heart disease. Jack-6 has tetrollogy of fellot with pulmonary atresia and has had two surgeries, Ben-3 1/2 has a single ventricle and after 4 surgeries is now on paliative care, Emmeline-8 months has tetrollogy of fellot and had her one surgery this fall. I also have a healthy 5 year old and 19 month old.



I live in Texas but all of our surgeries have been at the Mayo Clinic in Rochester, MN.



P.S. I have no idea if I spelled the conditions correctly

23 Comments

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Crystal - posted on 11/17/2014

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Hi is crystal. Daughter is 14. Had repair at 3 weeks. May need another surgery. Not easy to take. Want to get to know someone else with child with tof. I have so much to be thankful for because she loves ushering at church. May god bless everyone.

Sue - posted on 06/09/2014

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My name is Susan, I am a mother of 3 kids. 2 boys and 1 girl. My sons are 5 and 3. And my daughter is 1 month old. Abigail was diagnosed with Tetralogy of fallot pink tet on her 2nd day of life. It was the hardest thing that have ever happened to our lives. Our hearts were crashed as we watched our girl in NICU for 3 days. She was discharged to go home on the 4th day because her oxygen level was stable throughout but continued with weekly visits to the cardiologist to monitor her growth and oxygen level. She's due for her surgery in a month time and we're dreading for this time not to come. Anyone who can share their experience with this case, kindly share with us. Thank you and I pray for each one of you. This is a task that God has given us and he will help us through as we care for this little Angels.

Stephanie - posted on 10/04/2013

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Hi, I'm Stephanie. My daughter Sasha who is 9months has Tetrology of Fallot with pulmonary stenoisis. Sasha was also born 34weeks premature. She has surgery when she was less than two months old. Her next one is going to be within a year and half. They operated her in Miami Childrens Hospital. They constructed a wall to seperate her left and right ventricle and removed muscle tissue from her right ventricle. They also opened up her pulmonary valve and constructed a patch since its too narrow. Her next surgeries will consist of a valve replacement and ballooning her left and right pulmonary arteries. She's one strong little girl. She proves it everyday.

Amanda - posted on 08/08/2010

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Hello! I'm Amanda. I have an 8 month old who was born with TOF, restrictive VSD, and Pum. Atresia. He had a full repair at 5 days old. His surgery was done by Dr. Bove at the University of Michigan's Mott's Hospital.I also have 2 heart healthy children, a 9 yr old son and an 8 mon old daughter (Yes they are twins).

Robyn - posted on 07/07/2010

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my name is Robyn. I have one boy he is 17 months old, Landon. He was born a month early he has a whole in his heart... he also had total anomous pulmanary venus return. These problems were fixed at just two weeks old. He has not seen the heart doctor for a year... next appointment coming up on the 19th... extremely nervous to see what the doctor says.

Courtney - posted on 06/24/2010

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My name is Courtney. My daughter Audrey was born with tricuspid Atresia. I found out when I was pregnant wither her. She has had multiple surgeries, including 2 open heart surgeries. We actually just got back from the last surgery which was the Fontan. She did fantastic! We were home in 8 days. Her sats were down to 87% before surgery and they are now 99%. She is a strong little girl and I am so glad the worst is over.

Deborah - posted on 09/19/2009

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My name is Deborah. I have two children - 1 of each. My oldest Carsyn is now 6 years old as has Hypo-plastic Left Heart Syndrome-. He has been through all three surgeries and is doing good. I would love to get to know other parent here.

Mirrhya - posted on 09/11/2009

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My name is Mirrhya. My son Michael (10 months) has HRH with pulmonary Atresia. He has had two sugeries (BT shunt and Bi-directional Glenn). Still up for Fontan. So far everything has been going great. Sometimes I feel like I am waiting for the other shoe to fall. I live in New Westminster BC Canada.

[deleted account]

Hi my name is Tracey and Im a mum of 6, 3 girls and 3 boys, we live in Queensland Australia.

Tamika is almost 14, Lillie is almost 4, twins, Aylah and ~Jake~, Aylah is going to be 3 in December and twins Colby and Zane have just turned 1.



Jake was admitted to hospital aged 4 weeks new with dilated cardiomyopathy, an incurable disease of the heart muscle, he sadly lost his battle with the disease 3 weeks later and my world fell apart. He is still very much apart of our family, as is the terrible heart disease CM. My 4 younger kids have just had their most recent echo and have again been given a clean bill of health, they will be screened again in 2 years time.



I look forward to getting to know you all and your families.

xox

Marcella - posted on 06/26/2009

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Hi my name is Marcella Ramirez and I reside in Fairborn, Ohio. I am a single mother of two kids, my daughter Liliana 10yrs, and my son Brandon 7yrs. My son Brandon was born with Double Outlet Right Ventricle Syndrome. This condition consists of the same defectes you find in Tetrology of Fallot but the difference is that the aorta is not right above the ventricular septum, but pushed more to the right towards the right ventricle. My son's aorta is pushed 60% further to the right allowing the ventricle to have two outflow tracks...the pulmonary artery and the aorta; hence the diagnosis...Double Outlet Right Ventricle. My son had his first heart surgery in Dallas Children's Medical Center when he was 11 days old. His second surgery was done at Cincinnati's Children's when he was about to turn six months and his third at age 4. The number of echo's, cardiac caths, x-rays...I lost count a long time ago. Late last year we ended up finding out the he now has two coronary artery fistulas and left ventricular dysfunction. Cardiac MRI that he had in Nov 08 showed signs that he may have had a heart attack at some point. So far for now, things are well and he is getting his usual every 4-6 mos check-up and echo. He was placed back on cardiac and bp meds after the new findings. Unfortunately, we are very aware that he may need surgery again and maybe even a heart transplant. The big question is "When?"

Nicole - posted on 05/06/2009

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Hi everyone. My name is Nicole. I have 2 children. Kayla (7) and Tristan (3). Kayla was born with Coarctation of the Aorta, Pulmonary and Aortic Valve Stenosis, a bicuspid aortic valve, Mitral valve leakage (46%) and heart murmurs. She has not had any surgery aside from symptom related issues. We were told from the start Kayla would have to have several surgeries to repair her problems, most likely to start with PV or CoA - waiting still to get that done since for PV the pressure on the valve changes constantly. I am the residing WV STATE president for CHD Awareness and Kayla takes part in the Heart Walk in our area, yearly as well as active participation in NICU events (She spent nearly 4 months there). She sees an excellent pediatric cardiologist in our area and her cardiothoracic surgeon is based at Ruby Memorial Hospital in Morgantown, WV. Aside from not being able to do a lot of highly strenuous activities, Kayla seems perfectly normal. She is definitely a blessing in my life. :)

Julie - posted on 03/29/2009

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Hi, my name is Julie. I have three children, only my youngest has congenital heart disease. Jesse is 14, will be 15 the end of April, Kelsie is 12, and Keira is 8 months. Keira has tetrology of fallot and DiGeorge Syndrome.



We live in Cincinnati, Ohio and Keira's surgeries are done at Cincinnati Children's Hospital. She has only had one surgery on her heart so far, but has had two heart caths done where they had to put in three stents.

Heather - posted on 03/05/2009

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Hello everyone! My name is Heather. I have 2 kids my oldest Thomas who is now 10 years old was born with Complex Congenital Heart Disease. We found out at 26 weeks that he would have to have surgery after he was born. He has had 4 heart surgeries, which he is post Fontan. After the surgery he ended up with blood clots and went into cardiac arrest for 45 minutes, and a year later found out that he got the 10% chance of developing Protein Losing Enteropathy (PLE). This has been our biggest battle since his heart surgeries. In January 2009 he just had a pacemaker implanted. That was so unexpected and if it was for him have low saturations one night and putting him on the oximetry meter and oxygen we probably wouldn't have caught this. The alarm kept going off but it wasn't for his O2 sats, it was his heart rate being too low. He looks and acts normal except for all the meds he has to take. Two and a half years ago he ended up in the hospital with neumococus pneumonia and then RSV at the age of 8....didn't know they could get RSV at that age. Any ways, that's when we foundout he is immune deficient as well. He has to get his blood drawn monthly for INR and PT along with IGG levels and if they are under 500 he has to go into the hospital for IGG transfusions. He also was diagnosed with asthma.

I would like to know if any of you have problems with your kids taking their meds? And if any of your kids have a pacemaker as well? Thomas has the dual chamber pacemaker. Oh, by the way his heart diagnosis is VSD, Single anatomic Left Ventricle, Coarctation of the Aorta, L-transposition.

My daughter Chelsea who will be 7 on Saturday was born healthy, except for being diagnosed with dermagraphism other words "Skin Writing".



God Bless :)

Cristine - posted on 02/17/2009

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hi everyone! It's great to see this little community is growing. That's my son, Gabe in the icon. He was just a couple of days old in that picture. Gabe was born with pulmonary stenosis with an intact septum. He's had a balloonoplasty to open up his pulmonary valve and a BT shunt put in. When he was 7 1/2 months old he had a bi-directional Glenn. He's doing well now. In fact, he's going to turn 1 tomorrow. As for any other operations, we have to wait until he's 3 to check if he'll need a Fontan. We're hoping that it won't be necessary but it's all up to him. We have to see if his right ventricle will grow and if his tricuspid valve will open a bit bigger.



I live in Vancouver, BC (Canada). I guess we're pretty lucky to live where we live because we have an excellent Children's Hospital with informative and friendly doctors.

Kristi - posted on 01/20/2009

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Hi I am Kristi and I have three kids. Kassi my oldest is my heart baby, even though she is 8 1/2, she has Shones complex disease. My other two Corey, 5 1/2, and Camron, almost 4, have innocent murmurs. We live in Michigan and Kassi has had all her surgeries at Mott's children Hospital, at University of Michigan. Her first was at 5 months old to repair her mitral valve, then at almost 6 she had angio done on her aortic valve. At almost 7 she had the mitral valve and aortic valve replaced, and 6 days later had a pacemaker put in. She takes coumadin everyday which is a scary medicine but she handles it well.

TNell - posted on 01/13/2009

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Thats awesome Elizabeth!  We call our son our walking miracle because we know it is Christ who is keeping him so healthy!  Last week he had a Cath Lab and besides two narrow arteries (that weren't bad enough to balloon), he looks great!  The surgeon said he wished all his heart patients looked so good!  Yea Jesus!

Alexia - posted on 12/19/2008

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You know Elizabeth, that's exactly how I feel about my baby being in God's hands! There is absolutely nothing I can do to save him. ALL of it is left to my Good Lord above! Bless you...

Elizabeth - posted on 12/18/2008

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My hypoplastic left kiddo is also named Ben. We had hoped to make it to the Fontan but after 4 surgeries it was decided that he would not be a candidate for the Fontan or a transplant. He lives around 70% (I don't know if the altitude makes a difference but I do know that when he flies he gets lower) unless he is sick and then he can often be in the 50%. He also has a clotting disorder and has had at least one stroke. He is globally delayed. Last year in October we were sent home on Hospice and he wasn't expected to live through the month. He survived salmonilla and the flu even with his weak condition and being on blood thinners. But he was not "alive" like he is now. In March we had a miracle. He just woke up! He started walking and talking, and living. Now he is a different person. I have never seen a miracle like this first hand. There is no explanation other than the power of God. I have learned to trust God and face one day at a time. I know that He has everything planned and nothing I do can change that.

Shannon - posted on 12/18/2008

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Hi, I'm Shannon. I'm a mother of two girls, Jenna and Sydnie. Sydnie has Hypoplastic Right Heart Syndrome, Pulmonary and Tricuspid Stenosis. She's had three open heart surgeries and many procedures/tests, as I'm sure most of us are familiar with. Having her actually brought my husband and I closer together and she's done really well through all of her surgeries. We are patients at Duke Children's and part of a support group that meets there monthly, TMLH Duke.

Alexia - posted on 12/18/2008

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TNell, I have found that my son's sats are remarkable. I don't know if it does have to do with the individual or with the levels of our land. Of course, they are still lower than a majority of people. Angelo's sats sit at approx 85% 9 months after his Glenn procedure. He's still approx 6 months until his Fontan, but his pressures are keeping strong!

TNell - posted on 12/18/2008

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Alexia and Elizabeth, do you think your sons do better with their lung pressures down there? I have been told after Ben's Fontan that we may have to move to sea level because of the pressures that build up in the lungs. We won't know until after his surgery. Thanks!

Alexia - posted on 12/18/2008

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Wow Elizabeth, you really have your hands full! My name is Alexia Giddens, and I am a single mother of 4. My first three children are very healthy. My fourth son, however, was born with Hypoplastic Left Heart Syndrome and situs inversus totalis. He's had two opened heart surgeries, a small bowel resection, and a partridge in a pear tree. He'll have another opened heart in less than 6 months from now. After that, he'll be good for a couple more years until he's in need for his heart transplant. As the developement of my son goes, he's just peachy. If I can keep him from having his asthma flair up, you'd never know that there was anything wrong with him. Unfortunately, living in Florida doesn't help with that. He goes to visit his cardiologists in St. Petersburg, FL every 6 months.



Never in a million years would I have thought that I would be faced with such a life-altering ordeal. But ever since God blessed me with such an amazing little boy, I know that I am strong with the help of Him. No mother can ever understand what it feels like to be one of us unless she is actually "there" herself. My son is my hero. If it weren't for him, then Lord knows where I'd be in life right now. I thank God for every day that I am able to wake up to my beautiful baby.

TNell - posted on 12/17/2008

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My name is T'Nell. I have three children and so far only my son has the heart condition: Hypoplastic Left Heart Syndrome. I found out recently that it is a genetic issue on my side of the family so I am concerned my girls might be carriers. Ben has had two open hearts so far and two Caths done...though he is going in for another Cath in January to see how things are and if the third surgery is closer than we thought. We have been taking him to the Children's Hospital in Aurora, CO and his surgeon is within the top five in the world for his series of surgeries. My faith in Christ is what has kept me strong in the hard times and be able to help others in all times. Ben tries to keep up with his sisters and acts like he doesn't have a heart defect most of the time. He keeps me on my toes! =)

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