Valve replacement - Heart moms

GopherBaby13

Hi. I intro'ed awhile back. My 4 month daughter has left aortic stenosis. The last time we saw her cardiologist was in January. Things looked promising. We saw him again on Thursday and had an echo. Turns out that there is a significant amount more leakage and her heart is enlarged. You wouldn't ever tell by looking at her. He is having us come back at the end of April to do another echo and to come up with a plan. She will for sure have surgery by the end of the summer. Possibly earlier if the echo shows that things have gotten worse.

I'm a wreck. I'm terrified. I can't stop crying. I'm trying to keep my mind off of it but I can't. My SO is so amazing. He is being so strong for us and for her and I feel like I'm not being strong enough for them. Can you give me your experiences, please? I'm thinking that it might help.

cactusflower122

Hey, just wanted to say I'm in the same boat. My son is due next month, he has cardiomyopathy, redundant valves, and possibly coarctation of the aorta. They are going to start him off on medication when he's born but if that doesn't help he will need to have surgery also. It's terrifying and really not fair that our LO's have to go through this, but all we can do is pray and find whatever support we can. On one of my posts a mom recommended liking heart pages on fb. Oh and try to stay off of Google, everytime I Google his condition I end up in tears because there are so many scary stories out there. All we can do is trust our doctors, they want your baby to be better and will do the best they can. Also there are advances in medicine all the time, I recently talked to a lady who told me her friend's baby was born with half a heart, and now he's a happy, healthy 7 year old which I think is pretty amazing! Definitely gave me hope. Anyway, I hope the surgery goes well I will add your her to my prayers tonight.

dmc1156

Hi! I can't offer much support just let you know you're not alone.

At her 4 month appointment a month ago the dr heard a murmur (previously undiagnosed) which turned out to be severe pulmonary stenosis. We tried correcting it through a catheter procedure but it didn't work. Headed to surgery on April the 9th.

I feel the same as you, from looking at her you wouldn't know she has health issues.

I just take comfort knowing she's going to feel so much better.

GopherBaby13

I'm "glad" that I'm not alone. I wish no babies had to go through this.

C had a cath procedure done within 24 hrs after birth. Her aortic valve was completely closed.

@dmc1156‌ How are you doing now that you are 7 days from surgery? When was your daughter born?

This is a picture of Camille from two days ago. It's one of my absolute favorite pictures.

CaptainSerious

We adopted my son when he was 7 years old, knowing he had a coarctation of the aorta and needed surgery. What we didn't realize was how severe his case was. The doctors were shocked he had lived as long as he already had, and his surgery was scheduled within days of them seeing him. We already knew he had high upper body blood pressure, but they couldn't find a pulse in his feet without using a fetal monitor. It was the scariest time.

I know it's not the same proceedure, but there aren't a ton of heart mom'ss on here. I wanted to tell you to check out the children's hospitals near you and go to the best one around. Then put your faith in the doctors. It's scary, but this is what they do everyday. They saved my son's life! He's now 11, and so fit! He went from this tiny boy to one that everyone remarks is so big for his age. He plays football, snowboards, ice skates, plays baseball, swims, plays soccer, and is an all-around athlete!

Last time we were at the cardiologist, I heard he might need a valve replacement in time. It was the first time I heard that, and I was right back to worrying. I knew he still has an enlarged, overworked heart from his first 7 years and will be at risk for an early heart attack, but this was the first I heard that his bicuspid aortic valve may need replacing while he's still relatively young. They also told me that in his teen years, we may have to start restricting his physical activity and not allow his to lift weights! because those things might lead to an earlier need of the surgery. I don't know how we'll do that, since he is so physical. I get sick every time I think of it and wonder if it will be better to just have the surgery when he's younger so it doesn't restrict him from his passion for sports.

Take heart. You have found the problem early enough, and can now work on fixing it and nursing your sweet baby back to health. Trust the doctors, and take one step at a time. Nothing anyone says will make this easy, but know you are doing all you can to help your sweet darling.

JulesDiane

DD2 had open heart surgery at 8 days old. The doctors discovered at 2 days old that she had coarctation of the aorta, a large VSD, and a bicuspid aortic valve. We were lucky the found it before she began to struggle due to the defects. We were so scared as you would expect. Anything with the heart is a very scary thing. It's amazing at how far they have come in the medical field these days. So many of  the congenital heart defects are fixable, and even fixed fairly easily. Well, easy for heart surgery.  Lots of hugs for you. Really, its amazing what they can do!

My DD had her heart surgery at 8 days old and is doing great. She will not need any other heart surgeries in the near furure (maybe when she is 60), and will only need to see a cardiologist on a yearly basis.

Prayers for you and your little girl.

dmc1156

We went out of town to de stress and focus on our family. I think it helped us stay positive and get back on track. We are both happy that surgery day is finally here and dreading it at the same time. We check in tomorrow morning for pre-op then they operate on Wednesday. I guess whenever it gets overwhelming I thank God we are on the offense on this and that's it's saving her life.

She was born 10.29 at 37 weeks.

We kind of received a blow last week when we found out she has a genetic disorder but for now we are just focusing on the surgery.

JulesDiane

dmc1156 said:

We went out of town to de stress and focus on our family. I think it helped us stay positive and get back on track. We are both happy that surgery day is finally here and dreading it at the same time. We check in tomorrow morning for pre-op then they operate on Wednesday. I guess whenever it gets overwhelming I thank God we are on the offense on this and that's it's saving her life. She was born 10.29 at 37 weeks. We kind of received a blow last week when we found out she has a genetic disorder but for now we are just focusing on the surgery.

Prayers for her and your family tomorrow.

GopherBaby13

dmc1156 said:

We went out of town to de stress and focus on our family. I think it helped us stay positive and get back on track. We are both happy that surgery day is finally here and dreading it at the same time. We check in tomorrow morning for pre-op then they operate on Wednesday. I guess whenever it gets overwhelming I thank God we are on the offense on this and that's it's saving her life.

She was born 10.29 at 37 weeks.

We kind of received a blow last week when we found out she has a genetic disorder but for now we are just focusing on the surgery.

Prayers for your DD and your family tomorrow, @dmc1156‌. I will be thinking of her and you. BIG hugs.

GopherBaby13

Thank you all for sharing your stories. It does help a lot.