I am back from CHOP

jadwedd · July 2013

OK I now believe that the baby does have Truncus. The main valve (the trunk) of the heart was supposed to separate when she was 7-8 weeks old. But apparently, she was too busy trying to hang on back then to follow that rule, so it never separated. Now she has the truncus (which mean the trunk remains - I am turning into a dr. now). They have to fix the hole in the heart that is caused by this and add a tube. Also, as a bonus today they found out that her aorta is too small, so now she is classified as Truncus Stage 4 - the rarest of Truncus. Joy. So they will fix that about 2 days after she is born with open heart surgery. They have a 90% success rate and the aorta thing doesn't seem to be stressing out her doctors. I did have a few breakdowns through the day. They were checking her spine too long, and my dad and I got worried about that (yeah I brought my parents) and it turns out that part of one of her vertabrae did not form. They said it has nothing to do with the heart, and it is one of those things that most people walk around with and never know it. So I will deliver in Philly. They do not know if I will deliver at CHOP which would be ideal or at the hospital next door due to my weight and blood pressure and then take her through a tunnel to CHOP.

In good news, she shockingly would not move for the doctors. DH tells the dr that she dances to music at home. So she tells him to put on some music if he has it. First he put on the song from Rio, she moved a little. I told them that is not her favorite song, she likes Pour Some Sugar on Me (she also likes Talk Dirty to Me but that seemed kind of wrong to admit that I play that for my unborn daughter). She started honestly banging some baby head and dancing in there! It was amazing!

Keephope2012 · July 2013

Thanks for keeping us updated. Sorry to hear about her heart issues

I hope the information will help you provide the best care for her. Continued thoughts and prayers to you and your little girl.

daiseydooda · July 2013

Sorry you are going through this. 90 success rate sounds very promising. I will keep you and baby girl in my prayers. It sounds like your in good hands.

NYCGal276 · July 2013

Praying for you both always

amb2013 · July 2013

Was thinking about you a lot today. I'm so sorry you're going through all of this. My cousin was born with a hole in her heart (she's 35 now). She had open heart surgery when born and then again in her 30s. She was a normal happy kid growing up...she even plays hockey! I'm sure your baby is in the care of the best of the best!

Julie21613 · July 2013

Thank you for keeping us updated. 90% success rate sounds pretty damned good to me! I love how you played the music and she started to dance... so sweet! Will continue to send T&P's for you and little Amanda...

kw42775 · July 2013

Thinking about you!! One of my best friends was born with a heart problem and had open heart surgery sometime after she was born (I'm not sure exactly). She is almost 38 today..

Citygirl1015 · July 2013

I'm so sorry that you had such a tough day hugs

Sending you and your sweet baby girl so many prayers for a healthy delivery and recovery. I agree with the girls that 90 is a great success rate and that you're in the best of hands at CHOP.

As always, please let me know if you need anything while in Philly!

golfrgal · July 2013

Hugs to you for the stress this is causing. At least you have the best medical care possible all lined up for her ahead of time. I think the 90% rate sounds terrific!

LuClo · July 2013

Sending lots of good thoughts your way. Sorry that you guys have to go through this, but it sounds like the odds are in your favor.

myshaybaby · July 2013

I agree that 90% success rate sounds extremely reassuring. You've been through so much so far with your LO and she keeps fighting-she will fight through this too. Good luck!

baker916 · July 2013

I'm sorry to hear they confirmed the heart problem, but as PPs have said, 90% success rate sounds great. I'm sure it all seems very scary, but the good news is you're getting great medical care and both of you will be in great hands. You and little Amanda are in my thoughts!

BlueEyedDreamer · July 2013

I have a dear friend whose little girl had this. They did the surgery, and she is now a beautiful, healthy 2 year old. Your little girl sounds like a fighter, too. I'm hoping that your LO will have a similar success story! And I love that she dances to Def Leppard!!!

TrixieGirl82 · July 2013

So sorry you are going through all this. Sending lots of thoughts, love and prayers for you and your little one! It sounds like your going to a great hospital and the success rate is great. We know your little girl has been a fighter since the beginning and I am sure she will fight through this! It's good that they found out about this now-so that both you and the doctors can be prepared. My cousin's son had a heart condition (not sure what kind) when he was born. They didn't find out about it until they were being discharged and the nurse was giving the baby a quick look over and realized something didn't sound right with his heart. He ended up being transferred to a children's hospital downtown and had to have open heart surgery. He is a strong healthy little boy now. Hang in there-I cannot image the stress you must be going through now-((hugs)).

conradtn · July 2013

I have no doubt your LO is a fighter and will continue to do so. And 90% sounds great! Hugs!!

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