CHD , Open heart surgery

Ugh.... So I posted something a few months ago probably saying this same thing, but I am now going through the same emotions I was before. My youngest daughter has a very large VSD and she was going to have surgery this last fall, but she was doing so amazing and finally on the growing curve so they cancelled the surgery. Now it is January and last week at her cardiologist apt. they did a chest xray and said that her lungs are not doing so hot and that she needs to have surgery.. she is also back off the curve... bleh.
I guess i am kind of peeved at her cardiologist because we could have been all done with this already and recovered if she would have had the surgery in the fall.. but now i am going through the same emotions of freaking out that my baby is going to have surgery and all the what if's.. Most of me knows that she is going to do great and she is so strong.. but in the back of my mind there is the oh gosh things happen in the littlest of procedures what if what if what if!!!!! Basically driving myself crazy.. and it does not help that no one has called me to actually set up a date.. so i am thinking to myself when is the surgery going to be? I have two older kids that i have to worry about.. who is going to watch them when she has surgery? AAAAAAAAHHHHHH yeah.. i just want to scream.. So anyways I guess why i am posting is to halfway vent and to ask people for prayers and help.. Any advice on this? Let me know your experience.. how long were you waiting, how long were you in the PICU/hospital, what did you do to keep yourself sane? lol
I don't get on here much, so if you have facebok you can "like" my page that i made for Leirabelle, (facebook.com/loveforleirabelle) and message me on there and follow our journey... Thanks in advance. <3

I am sorry hun my son has a sever ASD defect and it has been hell they talk about surgery then they change their minds just to change it again which sucks because your always waiting for them to say surgery again and hoping that it may have healed up a little. I will keep you all in my prayers and stay strong.

I know your pain.. we have had two cancelled surgeries already... I for sure thought that they were going to say she looks great see you in 3-6 months!!! But no they said oooh sorry surgery............. Part of me is hoping they cancel the surgery yet again.. but i know it is doubtful.. Leirabelle has a very large VSD. It actually makes me mad when i hear the docs talking about her "ginormous vsd" but maybe i'm just cranky today My prayers go out to you and your little one!!! how old is he?

He just turned 3 last august. His ASD defect looks like a funnel it's like he had a small hole in the middle that someone pinched and dragged into the right side of his heart so there is a large hole in the middle and a small hole at the end of the funnel looking thing it has closed a little but he is still being monitored closely to keep an eye on it. They were talking about surgery when he was almost a year but he had no complications from his heart defect which all the doctors like to say is so rare due to it being so large so they canceled it.

They talked about doing it again when he was two because all the extra blood to the right side was enlarging the lower right chamber and they were scared it may weaken the structure of the heart then it closed up 10% so they canceled it now they just keep mentioning it and saying we will see :-( I wish they would just say yes or no "we will see" drives me crazy.

how big is her VSD?

Do they still use a 1-5 scale?

I was born with a VSD myself. Ended up not needing surgery but i was also very very small as a child. I was told I couldn't be as active as the other kids but nothing ever came of it. Mine was only considered a 4 though.

Hang in there mama. ((hugs))

both of you mamas i have a question.
When you went in for your anatomy 3D scan did they pick up either of these issues?

They never caught my sons until after I delivered ASD's are very hard to find unless they are looking for them. I had my first pre-term labor episode at 29 weeks and they found that my son had an irregular heartbeat but never caught his ASD. Fifteen minutes after he was born at 34 weeks his heart rate went up into the 200's due to his ASD defect and he was given meds and monitored closely they gave him an echo and thats how they found it.

My daughter was born with a medium sized VSD, Pulmonary Stenosis and a muscle bundle in her right ventricle, which caused an Aortic Valve leak. Her cardiologist wanted to hold off on surgery until she was 4, but with the leak, they had no choice but to do OHS. From open to close, it was a six hour surgery. I was freaked out, but I thought of the good the surgery would do and the nurse that was in there with them came out and updated us every 15-20 minutes. We were allowed to see her after they cleaned her up and got her into CICU, but I couldn't hold her or touch her because they wanted to keep her heart rate down. Her Surgeon explained that when he opened her up, it was worse than what they had originally thought and he was surprised that she was as spunky as she was.
She was in there for about a day, heavily sedated and then she was moved to recovery, weaned off the morphine and kept on Lasix and another Diuretic because her lungs were still putting out a decent amount of fluid from the chest tubes. She was in the hospital for about a week.
That was when she was 2. The only lasting effects she has is the left side of her Diphragm is partially paralyzed, but we're just waiting to see if it repairs itself, if not, she'll most likely have a minor surgery to repair it.

Good luck, it's rough, but it's just one of those things, you've gotta do what you've gotta do. Your daughter will be in my thoughts.

Thanks for everyone's responses!
The cardiologist said that they rate the loudness of the vsd on a scale of 1-5 and she is at a 4. but that is the only scale that i have heard of.. I never asked how big her vsd is. all i know is that it is very large, it is getting smaller, but it is closing the aortic valve little by little and causing it to leak, not much though. that is what they found from her last ECHO.

And I found out she had some CHD's when she was in the womb. I just felt funny one day and went to the e.r. when they were monitoring me i saw that her heart rate was a lot lower than it ever was before.. the doctors said nothing about it so i went to see my OB and she was very concerned.. they could not tell the difference from my hearbeat and hers so i was monitored weekly with u/s and non stress tests and that is how i found out she had some heart problems. When she was born it turned out to be a lot better than expected so that was great news!

my son was born with D-tga. he has had 2 open hearts and 3 heart caths.

the lenght of time after OHS depends on a few things. your kids age, the type of surgery, the hospital its done at, and any complications that might occur.

we went with Motts in Ann Arbor MI, which was rated #3 the year he was born (its #4 now) though we live in Ohio.

he did great with both surgeries, and had no post operative complications.

his first surgery was the "big one" it lasted 7 hours, he was intubated for 4 days, and came home on day 8. he was 10 days old when he had that one

his second one only lasted 2.5 hours max, was intubated less than 24 hours, and came home 6 days post op. he was 3.5 months for that one.