Open heart surgery

amother

Chocolate

Wed, May 19 2021, 4:23 pm

amother [ Beige ] wrote:

I wouldn’t. Even if you won’t get an accurate exam, at least you can get the ball rolling- have a doctor listen to your concerns, order imaging/testing or additional consultations if needed.

Ok makes sense. Thanks!

amother

Hotpink

Thu, May 20 2021, 6:44 pm

amother [ Chocolate ] wrote:

I don't want to derail this thread but I see so many mamas on here who've dealt with these issues so I'll ask and hope any of you can advise me.

My daughter had nearly collapsed bilateral lungs when she was born, spent 2 weeks in the NICU til they got stronger. At some point, they suspected a heart defect so the cardiologist ran an Echo and sonogram, which showed a PFO. Dr said it was minor and that there wasn't anything that needed to be done.

However, she still looks like she has to work hard to breathe. I know this because she has an indent on her neck which goes in very deeply when she breathes. She's 5 months old. She has had this since she was born. Her regular pediatrician said there's nothing to worry about. But I am worried, especially since it seems to me like she's also sweating very excessively when she eats. Like she's working too hard.

Do you think I should see another cardiologist at least to calm me down? Do you think I have anything to worry about?

Hope I'm not hijacking this post because that was not my point!! I'm just at a loss. Any advice would really really be appreciated!

You can also go the genetic testing route which may help in getting a diagnosis, then you know which specialist to see

amother

Thu, May 20 2021, 6:50 pm

amother [ Chocolate ] wrote:

I confused the dates, my appointment is next week Thursday. Can’t believe I traveled into the city for nothing, I’m so upset!!

Oh my! That's so annoying! I would be so mad. I dont wanna go myself. I think dh may come and wait....

amother

Beige

Fri, May 21 2021, 12:09 am

amother [ Chocolate ] wrote:

I confused the dates, my appointment is next week Thursday. Can’t believe I traveled into the city for nothing, I’m so upset!!

Oish Oh my goodness Sad

that’s so annoying and upsetting. Ugh, after all that...

amother

Chocolate

Thu, May 27 2021, 9:23 pm

So bh my appt today went great! He doesn’t think there’s anything to be concerned about, but he took my worries seriously.

He said the reason for the indent in her neck while breathing is that the cartilage near her voice box is still soft and will probably resolve by the time she’s a year old. Anyone ever heard of this?

He also said he’s opening an office in Monsey which is really great for whoever needs to see him!

I asked him about my daughters constantly open mouth and why she keeps sticking her tongue out but I don’t remember him coming back to it after so I’ll talk to her pediatrician.

amother

Chocolate

Thu, May 27 2021, 9:24 pm

amother [ Hotpink ] wrote:

You can also go the genetic testing route which may help in getting a diagnosis, then you know which specialist to see

He spoke about genetic testing but said that if he felt there would be a need to do any now he would but bh he doesn’t think it’s necessary.

amother

Mon, May 31 2021, 9:05 pm

So my appt is tomorrow. I am.hoping everything will be ok but really nervous. Taking off the day of work and spending time with dh in the morning. He is going to wait for me to be done since I dont wanna drive home myself. They said I can switch with sh if I want in tje middle so he may come up for a bit. While I go down...really upset about this policy

cbsp

Mon, May 31 2021, 9:12 pm

amother [ OP ] wrote:

B'hatzlacha! May the doctor(s) be a good shaliach.

Maybe you can have your husband join the appointment via a device - even just a phone if you don't have a screen.

amother

Mon, May 31 2021, 10:15 pm

Thank you. I told my mother today what was going on even though we were gonna wait. I work with her and asked her to have her or my father pick up my kids tomorrow since I wont be back for 2 of them....not sure if dh was happy about that. Lol

amother

Amethyst

Tue, Jun 01 2021, 6:52 pm

My DS was born with a congenital heart defect that included a hole in his heart..I had a ton of sonograms during my pregnancy bc of complications and noone ever picked up his heart defects. That being said..it was discovered as soon as he was born..bc his oxegyn levels were low and he wasnt eating..his first surgery was in Mt. Sinai..second for a defect that developed later on in Colombia with Dr. Bascha. I liked Colombia better..more support there.

amother

Tue, Jun 01 2021, 7:52 pm

Thanks everyone. So bh they did the testing and ultrasound. They even let dh come and apeak to the doctor bh! Was so nervous about that part but they said he can come. So Dr. levassuer agreed with the other cardiologist and she needs heart surgery. Bh she seems to be not symptomatic except that she should be bigger. (she is 10 pounds at almost 4 months) We told them to have thr surgeon department contact me for a surgery date. She says it should be a few days in the hospital and then the baby iyh should bounce back pretty much right away barring any complications. I likes this doctor. She was very very nice and had great bedside manners.
It will be one of two surgeons, dr. Bacha or dr. Kalafa. They said they are both good. Pediatrician said both are fine so I saif whichever can do it faster. Does anyone have experience with any of them? They want it done as soon as possible as in next couple of weeks...

amother

Tue, Jun 01 2021, 7:53 pm

amother [ Amethyst ] wrote:

I am.going with Columbia over mount sinai. How was dr. Bascha?

amother

Lime

Tue, Jun 01 2021, 8:42 pm

Hatzlacha!! We used Dr. Bacha and we were very happy. And Dr. Levvasseur is fantastic! My baby had surgery for VSD and ASD at four weeks old. She was in the cardiac nicu for only a few days afterwards and then bh discharge home.

amother

Tue, Jun 01 2021, 8:47 pm

amother [ Lime ] wrote:

Thank you! I really appreciate it! I am hoping for a smooth recovery!