Mended Little Hearts Open Forum

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  • 1.  Introduce yourself

    Posted 08-26-2017 05:03
    Hi Everyone,

    My name is actually Ashley Nelson, when I set up our account initially I thought I was filling out a questionnaire for our son, so my name shows as Caleb. My son Caleb is now just over 2 years old. Caleb was born undiagnosed, his special little heart was found to have a CHD and VSD within the first week of life and he was in heart failure by the second. It turned out his VSD was much larger than thought so he ended up at the Seattle Children's Hospital where he underwent surgery. There I was told he also had a right aortic arch with mirror image and a left superior vena cava. Caleb's only weighed 6 lbs the day of his surgery and it was a huge success. His heart was the size of a ping pong ball and his larger hole, his VSD was the size of a nickel. Caleb has been living his life as a "normal" baby/toddler for about a year now. He had a genetics consultation and now needs to be tested for syndromes and then he had his heart checkup two weeks ago and I was told his Aortic Root is dialated, and now I'm back in panicked Heart Mom mode, I'm afraid to let him cry, or let him play outside in the unclean air (forest fire season in Montana). I hope by joining in here I can let some of my worry go and be able to find others parents who can relate. I don't have any connection to fellow Moms in my area and I'm not great at reaching out.


    Ashley Nelson
    Mommy of four 5 and under
    Lolo, Montana

  • 2.  RE: Introduce yourself

    Posted 08-28-2017 09:37
    Hi Ashley. 

    Welcome to the community. My name is Andrea and I am the community manager here, but also a heart mom. My son is 8 now and was born with a complete AV Canal defect and a few other defects. We are currently watching his aortic valve for stenosis. 

    I feel you in the worry department. It seems like some days are good for me and I barely think about it. Other days I'm a mess. I think it's a normal part of being a heart mom. We want the best for our kids and we worry. I don't have any magic words to stop that but just wanted to let you know you aren't alone. 

    PS: Caleb is adorable! 

    Andrea Baer
    Director of Patient Advocacy
    Mended Hearts/Mended Little Hearts
    Grapeville PA
    Director of Patient Advocacy

  • 3.  RE: Introduce yourself

    Posted 09-20-2018 10:28
    Good Morning Everyone!
    My name is Carmen Waga, and my son Brandon, who is 17 years old, was born with Hypoplastic Left Heart Syndrome. When he was five days old, he when into cardiac arrest. Later that day, we find out that he was born with HLHS. It was very devastated for the whole family because we were told he was born fine. The Army hospital that he was born on did not detected his condition. He was flown to the nearest Children hospital in the area. At the hospital we were given three choices: compassionate care, heart transplant, or three radical heart surgeries. We automatically, disregard the first choice. As far as the second option the hospital did not had a heart available for him. Having no knowledge of what HLHS was about (we were given 24 hours to decide the choice) my husband and I decided to go to the Hospital library  and try to fine information as much as we could to read from. At day 7th, Brandon had the Norwood procedure, which late cause to major complication due to fluid being retained in the chest area. We did not see him open his beautiful green eyes, three months later, hoping and praying every single day and night for his prompt recovery. When he finally, was removed from all lines, close the chest cavity, removed the ventilator, feeding tubes, etc.(he had all these equipment for three months and 1/2) he had forgotten who to suck a bottle, and didn't know how to even cry. At five month all he had the Bi-Glenn Procedure, at 4 he had the Maze Procedure (tightening of the Triscupid valve due to a severe regardigation) at five years of age, he finally, got the Fontan and Pacemaker Placement due to the development of arrhythmia.

    Growing up has been like a roller-coaster with ups and downs, but yet rewarding years for us, Brandon have so much resilience at a such young age. He has teach us how to really been strong not only as individuals, but as a family. We love him to so much! He has also developed thrombosis of the Neo-aorta, Protein Loosing Enteropathy, Esonophilia gastritis. He graduated in June, 2018 working on a dual program: High School + College Credits. He is now a freshman in College, he would like to be an Astronomy. Please feel free to write me at any time.
    Waga Family

    Carmen C. Waga

  • 4.  RE: Introduce yourself

    Posted 01-19-2019 14:44

    My name is Natalie Martell. I am a 14 year old student, currently attending 8th grade in New York City. I was born with HRHS which is also known as hypoplastic right heart syndrome. I was in the hospital for surgery every year from when I was 1 until the age of 3 when I had my hopefully final open heart surgery. Since then I have been living a so far healthy life. The main reason I became a member is because of two things. The first being the fact that I have participated in the rock your scar photo competition for the past 4 years. (and yes, I will be doing it again this year) I find it to be so empowering that such a big group of people with heart conditions like me, comes together every year to participate in this with one another. The other reason is because of school. I go to a Nursery though 8th grade school, so this being my last year we have this big project called capstone. Capstone is a project that happens in the spring where all the 8th graders have to think of something that is meaningful to them and give a presentation to the entire grade. To me, the one thing that has made the greatest impact on me, is organizations and foundations like this. So, I have decided that I want to be able to make an impact on the other mended heart members, and heart condition patients around me.

    Natalie Martell
    New York NY

  • 5.  RE: Introduce yourself

    Posted 01-19-2019 15:00
    Hello Natalie,
         Welcome to the group and thanks for posting. It's not very often that I hear from young heart patients. I'm sorry to hear that you had heart health issues at such an early age, but I'm happy to see how grounded you are and that your proud to "rock your scar".  I feel the same way and I'm not ashamed of my scars. I feel that it's helping me tell my story and what a story it is. It's not what happens to you, but how you handle it that builds character. I wish you the best in your future endeavors and I can't wait to see you "rock your scar".

    Dianna Amberg
    Chapter 92 - President
    Mended Hearts
    Lebec, CA

  • 6.  RE: Introduce yourself

    Posted 11-20-2017 20:51
    My name is Chelsey Kittredge. My son, Logan, is 21 months now. A week after he was born, our pediatrician heard a murmur and recommended an echo. From there, we found out he had a large VSD and PFO. He also had branch pulmonary stenosis. We began seeing our cardiologist regularly trying to get his weight up in the hopes of healing on its own. It did not and on Oct. 4, 2016 my son had open heart surgery at 8 months old at Riley Children's Hospital. The day before surgery, the surgeon said there may be a muscle band they'd have to remove in his right ventricle but that it could also just be turbulence. It turned out that the band was there and had to be trimmed back. Since then, he no longer has any heart diagnoses. After surgery, Logan kept getting recurring ear infections and had to get tubes in May. He has had a bad cough for as long as I can remember. He takes allergy medicine regularly. He is a very smart boy and very quickly caught up with all if his milestones. We've started potty training because he's been such a nightmare trying to change his diapers. He's only had success once so far in the potty but he's receptive to trying.
    Up until now, I have sort of avoided this site. When I researched before surgery, I would find things I didn't know I needed to be worrying about and it made me feel so much worse. My husband did most of the research after that and let me know what I needed to know. After surgery, I didn't think I needed it anymore but I don't know anymore. 
    I apologize I'm not as familiar with all of the heart acronyms.

    Chelsey Kittredge
    Fort Wayne IN

  • 7.  RE: Introduce yourself

    Posted 05-10-2018 15:42
    Hello Everyone. My name is Suzanne Milles. I am currently caring for my grandson, Tristan, who has HLHS. He had his Fontan surgery on January 9th of this year. He did well but suffered a chylothorax plural effusion about 3 weeks after being home. He will be four years old on August 9th.  Sadly his mother, my daughter in law, died of a drug overdose June 2nd of last year. The drug crisis is real! We had no idea she had a drug problem. Although She did suffer from depression after the baby was born so sick. We just found out Tristan has Aortic Stenosis. They originally thought it was just scar tissue and used a balloon to try to break it up in a catheter procedure. Now they are saying he needs actual surgery to repair it soon. The thought of another surgery so soon is very overwhelming. He also has developmental delays and very likely ADHD.  We currently have Speech Therapy, OT, music therapy and a nurse who comes weekly. We take trips to the Cardiologist who is 125 miles away every two weeks. He has been suffering with severe stomach pain and doesn't want to eat since his Fontan surgery. We meet with the Gastroenterologist in two weeks. He certainly is a full time job. It is all very overwhelming.

    Suzanne Milles


  • 8.  RE: Introduce yourself

    Posted 05-11-2018 07:44
    Hello, my son has hlhs and will be 10 years old this summer. I just want to send the heart parents a little extra love right now and for Mother's Day, and the Heart grandparents as well! Especially those who are still in the first few years of the journey and adjusting to a lot and working out a lot of issues. Your heart family is here for you and always will be!

    My son had his Fontan almost 6 years ago now. Since September, he's been doing martial arts classes in Jiu-Jitsu and that has been life-changing and wonderful for him, mind and body. He has signed up to do diving and swimming this summer as well, and be part of a tree climbing Club at a local nature center. Our Make-a-Wish trip is also scheduled for this summer.

    So there is a lot of good news even though he does struggle sometimes with his diagnosis and certainly with anxiety and ADHD type behaviors, which can be really challenging. But he is very smart and Brilliant at the same time, definitely they broke the mold with this one!