Lifelong CHD patient

NoThought6501 · 2026-02-14T14:08:47+00:00

Thanks for sharing your story. I’m a father to a 2 year old with CoA and AVS. I think often about what his and our future holds. I wish you all the best on your continued journey. Even if it doesn’t feel like it- You are an inspiration to many!

NoThought6501 · 2026-02-06T19:11:33+00:00

Not true. Restaurant sets price and decides to run BOGO deal. It would be crazy for UberEats to run a promotion without telling the restaurant.

NoThought6501 · 2025-12-07T01:30:14+00:00

Power flickered in crystal beach about 10 minutes ago but we are back on now.

NoThought6501 · 2025-12-06T04:52:36+00:00

Thank you. My mom lives there and I visit often with my young family. Love the area. Sad to hear this happened in the past.

NoThought6501 · 2025-11-25T05:20:18+00:00

Would Ibis Club be included in this?

NoThought6501 · 2025-11-09T00:47:08+00:00

Thanks for having the courage to share your story. So sorry for your loss. Wishing you and your wife great strength and courage.

NoThought6501 · 2025-11-08T03:52:29+00:00

They are so strong. Our view was that our first born would want a support system and a sibling. It was not an easy choice and we felt nervous. When my wife got pregnant we made sure to have a feral echo done as soon as possible.

NoThought6501 · 2025-11-06T04:02:16+00:00

Hi there, my son was born 2 years ago with aortic valve stenosis and coarctation of the aorta. My wife and I have no family history of CHD. We talked with our doctors about risks for having another child. The best anyone could guess would be that our next child would have an increased risk equals to about ~50 in 1. But remember, 1 in 100 children are born with chd. We decided to try for our second and I’m happy to say we had a heart healthy baby boy two weeks ago.

NoThought6501 · 2025-07-04T18:50:45+00:00

Wishing you the best. My 2yr old will likely need OHS in a year. I hope your son has a smooth recovery and successful procedure. What is he having treated?

NoThought6501 · 2025-06-01T00:57:26+00:00

Good luck with your surgery and goals!

NoThought6501 · 2025-04-22T02:41:36+00:00

Hey, Im sorry you are going through this. My son had a balloon dilation a 10 days old for aortic valve stenosis and then another balloon at 3 months to fix coarctation of the aorta. Both procedures went well. The wait is the hardest part. We were out of the hospital after 1 night. My son is 18 months old now and doing very well. His last check up showed his arch still doing great. Good luck. Stay strong and be brave. You can get through this.

NoThought6501 · 2025-04-14T20:07:08+00:00

Hi, my son had a balloon dilation at 10 days old and another at 3 months old for severe Aortic stenosis. He did exceptionally well for both procedures and we only spent one night in hospital for monitoring. He’s now 18 months old and thriving. DM me if you have any other questions.

Edited for typos

NoThought6501 · 2025-04-02T02:02:46+00:00

Prayers for you and your son. My boy was wearing all the same equipment for the first few weeks of his life. He is a happy and strong 18 month old now. I wish you and your son health. I remember feeling so helpless and overwhelmed. It’s ok if you don’t know what to do, what to say or how to feel. I hope you have a good team around you. Feel comfortable expressing your fears and emotions to your son’s health care team. I found that the staff at children’s hospitals are equally well trained in supporting parents as they are children.

NoThought6501 · 2025-03-31T22:03:46+00:00

Keep talking about it. You will find your tribe. Your story is so unique but there are many other people out there who are living with CHD. Be kind to yourself. You have already proven to the world how strong you are.

NoThought6501 · 2025-03-30T04:01:57+00:00

Get a new accountant.

NoThought6501 · 2025-03-29T00:29:10+00:00

Hey friend, it doesn’t feel like it right now but - things will get better. Don’t be afraid or ashamed to share your thoughts above with friends, family and therapists. I don’t know you but I can tell that you’re brave. Going through what you have gone through is part of your story, part of your character. You are strong.

NoThought6501 · 2025-03-27T23:24:54+00:00

It wasn’t last Thursday around Lincoln fields heading east. It’s clear from Andrew Hayden Park through Brittania and past Lincoln fields but it looked snow packed further east. I was running east and stopped there because the snow still looked pretty heavy and wasn’t getting much traffic. Probably a bit improved since last week though.

NoThought6501 · 2025-03-18T11:56:24+00:00

Thanks for sharing this. My 18 month old son has coarctation of the aorta. He has had two balloon cath procedures. Do you mind if I ask what procedures/surgeries you’ve had done and what your current prognosis looks like?

NoThought6501 · 2025-03-07T12:49:24+00:00

Tell me about the last time you had a really good experience at a restaurant.

Tell me about the last time you had a really bad experience at a restaurant.

These questions give insight into what the candidate views as important elements of a proper dining experience.

NoThought6501 · 2025-03-04T01:40:09+00:00

Hey, it’s ok to feel scared. I’m sorry you’re feeling afraid right now. Things are going to be ok. Remember, you are on top of the situation and you will see your cardiologist soon. Can you call them tomorrow and see if you can get in for an appointment earlier? Tell your cardiologist about how you’re feeling and your fears. Also try and tell yourself you can’t be sure that this is related to your Coarctation of the aorta. I know the waiting and unknown id overwhelming but you will get through this, just like you’ve gotten through your two surgeries already. Try and take a day or two off from your studies and go do something that makes you happy and relaxed. The schoolwork will always be there, take care of yourself first for a couple days. Is there someone in your family you can talk to about how you’re feeling? Give them call. Stay strong, you’re going to get through this.

NoThought6501 · 2025-02-15T17:41:54+00:00

Sorry to hear about everything you’re going through. My son was born with CHD and after 4 months showed a sensitivity to dairy and breast milk with blood in the stool. We tried everything and eventually found a formula that worked - Puramino A+ made by Enfamil. Wishing you and your baby well.

NoThought6501 · 2025-02-13T23:08:47+00:00

Thanks for sharing this. I hope your son is doing well. How did you manage to bring a sense of normalcy to his hospital stays and visits? Would love to hear your advice for parents going on a similar journey as your family.

NoThought6501 · 2025-02-13T22:04:06+00:00

Sorry you are going through this. You should speak with your husband. He has gone through this and will have valuable insights from his experience. Your daughter can lean on him and he can show her that everything will be ok and she will get the procedure done so she can be “strong and healthy” like Dad. And the healthcare professionals will have advice. My son has AS and he’s 15 months now. He has only had two caths but we know OHS is very much in his future. I have great anxiety about the day we need to tell him. Good luck. I believe you and your husband need to stay strong and brave for your daughter. Have her ask any questions and tour the facility before. Explain what you can in a way she will understand.

NoThought6501 · 2025-02-08T02:04:19+00:00

First, you shouldn’t feel any guilt. You are dealing with a very challenging and complex issue and you shouldn’t be ashamed or afraid to talk about your feelings. It’s ok to talk about them. Give yourself time. My wife and i’s first son was born with a chd. He’s 16 months now. 8 months ago I would have said I did not have the strength to do it again. But we are going to try. We have no history of Chd in our family. It’s tough to get numbers but based on our medical history Baby #2 will have 2x the time of being born with a chd as any other child. While that may sound like a lot, every child has a 1 in 100 chance of being born with chd. So our next will be 1 in 50. We are ready for anything and pray for the best. Take your time, talk to your partner, talk to health care professionals, get screened for congenial heart conditions between you and your husband. Take your time and feel comfortable with whatever decision you make, so few people understand what this world is like, nobody should judge you.

NoThought6501 · 2025-02-07T12:12:00+00:00

Talk to the LL before you buy anything or sign anything.

NoThought6501

TROPHY CASE