A lot of you know I'm expecting (26 wks), so I thought I'd give you an update since I consider you my friends! We found out at our 20 week ultrasound last month that the baby has a serious heart defect. He'll need open heart surgery within a week after he's born in order to live. He'll probably need more surgeries/procedures as he gets older. It was such a shock.
The "good" news is that we live in Philly and CHOP (the childrens hospital of philadelphia) is one of the top hospitals in the country for cardiac care/surgery. They have a delivery unit so I'm going to deliver right there, so he can be monitored right away.
Keep him in your thoughts and prayers...the past month has been really rough, and things will get even crazier after he's here! We're still so excited for him to arrive and confident things will be okay.
I'm so sorry. I hope everything goes as smoothly as it can for the baby and you after he's born. I've heard exceptional things about CHOP. I'm glad you'll be able to deliver there. You'll be in my thoughts. Hugs.
I'm so sorry you've been dealing with the shock of news like that. I think you sound very positive and upbeat and I think that will really help get you through! many thoughts and prayers for you and your little baby!
So sorry about the news but CHOP is the best. I work at another CHOP NICU and the docs and nurses are great. May I ask what defect your LO has?
Are you at Pennsylvania Hosp by any chance? I delivered DS#1 there 2 years ago and he was in the NICU b/c he was a preemie.
The defect is d-TGA (transposition of the great arteries), a VSD (ventricular septal defect, or a hole), and PS (pulmonary stenosis...his valve is partially blocked by muscle). We're hoping for an arterial switch surgery, which has really high success rates, but with the PS he may need a different surgery (still good success rates but will require more future surgeries). They won't know until they go in.
Lurker here, but wanted to say your little one will be in the best hands at CHOP. My DN was born with TGA as well, but unfortunately it was not found until after his birth and it was quite a harrowing experience to have him transported from the hospital he was born at to CHOP not knowing if he was going to make it. But he did!!
His birth was also traumatic in that they broke his clavical and his arm getting him out - he was also blue and they weren't sure how much he was deprived of oxygen. They had to have some additional tests that came back with some abnormal information, but after second review, all looked okay. Due to this, they had to put off his surgery, but when he had it, it went smoothly - and my DN is now 2 years old and a happy, normal, healthy little boy.
If only my SIL had know all this information up front, they would've scheduled a C-Section at CHOP and done exactly what you are doing. I wish you the best of luck!
Lurker here, but wanted to say your little one will be in the best hands at CHOP. My DN was born with TGA as well, but unfortunately it was not found until after his birth and it was quite a harrowing experience to have him transported from the hospital he was born at to CHOP not knowing if he was going to make it. But he did!!
His birth was also traumatic in that they broke his clavical and his arm getting him out - he was also blue and they weren't sure how much he was deprived of oxygen. They had to have some additional tests that came back with some abnormal information, but after second review, all looked okay. Due to this, they had to put off his surgery, but when he had it, it went smoothly - and my DN is now 2 years old and a happy, normal, healthy little boy.
If only my SIL had know all this information up front, they would've scheduled a C-Section at CHOP and done exactly what you are doing. I wish you the best of luck!
I'm glad your nephew is doing well! The doctors keep stressing that it's good we know about this ahead of time. I'm just holding onto that!
So sorry about the news but CHOP is the best. I work at another CHOP NICU and the docs and nurses are great. May I ask what defect your LO has?
Are you at Pennsylvania Hosp by any chance? I delivered DS#1 there 2 years ago and he was in the NICU b/c he was a preemie.
The defect is d-TGA (transposition of the great arteries), a VSD (ventricular septal defect, or a hole), and PS (pulmonary stenosis...his valve is partially blocked by muscle). We're hoping for an arterial switch surgery, which has really high success rates, but with the PS he may need a different surgery (still good success rates but will require more future surgeries). They won't know until they go in.
Nope, HUP but I worked at Pennsy prior to moving to babies.
Lurker here, but wanted to say your little one will be in the best hands at CHOP. My DN was born with TGA as well, but unfortunately it was not found until after his birth and it was quite a harrowing experience to have him transported from the hospital he was born at to CHOP not knowing if he was going to make it. But he did!!
His birth was also traumatic in that they broke his clavical and his arm getting him out - he was also blue and they weren't sure how much he was deprived of oxygen. They had to have some additional tests that came back with some abnormal information, but after second review, all looked okay. Due to this, they had to put off his surgery, but when he had it, it went smoothly - and my DN is now 2 years old and a happy, normal, healthy little boy.
If only my SIL had know all this information up front, they would've scheduled a C-Section at CHOP and done exactly what you are doing. I wish you the best of luck!
I'm glad your nephew is doing well! The doctors keep stressing that it's good we know about this ahead of time. I'm just holding onto that!
My SIL cannot speak more highly of the dr.'s and staff at CHOP. Yes, it is really good that you know so much before hand to be prepared and know all the scenarios. SIL and her DH were very upset that something like TGA was missed at their 20 wk scan. DN has had PT for his birth injuries, but again, other than that, he is an amazing little boy.
So very sorry to hear this E. It's got to be terribly stressful but it sounds like you and your sweet baby are very good and capable hands. I just said a long prayer for you and your sweetie, more coming your way.
Oh my, I would be worried sick if I were you! I can't imagine how you are feeling. Sorry about the news. But I am sure everything will be fine given you will be going to one of the best hospitals in the country! Will definitely keep you both in my prayers!