@lizdiane456 so glad you have a therapist already and that you let yourself feel and express all of this. And just hearing you say the acronym APVS gives me hope. His version of it is so rare that there is literally one paper we’re consulting. That said, you’re right, and I’m not googling; our cardiologist is sending us everything with context and that’s perfect. I hope and pray we get to the point where I can start asking you NICU questions, if you’re comfortable talking about it with me.
@ccmrc143 I’m more familiar with it as a variation of tetralogy of fallot, something like 1-5% of cases have that variation and I have had lot of kids with the more standard TOF. But from the sounds of it his is more of an isolated occurrence. I’m glad you have a good cardiologist. Absolutely! Feel free to ask me anything, especially as you get closer to delivery. If you are in the states I’m less familiar with practices down there but NICU is a fairly small world, I can’t imagine it’s too different.
@ccmrc143 I’m late to wishing you well, but I’ve been thinking of you and your little one. It’s good to hear he has a diagnosis now, I hope that helps you with next steps. Your update really resonated with me as I’ve also had to process all of those ableist and “meaning of life” kind of questions early as a parent. My DS1’s newborn screening came back positive for a genetic disorder that might have meant he wouldn’t live past childhood and I also had to sit with all of those feelings and what ifs and grief that my child wouldn’t have a “normal” life. I think you said somewhere here that you’re seeing a therapist and that’s the best thing right now, imo. You can do hard things. Remember to take care of yourself too. Continue to surround yourself with a supportive network. And to echo what others have said, if anyone you know is truly pro-choice, they won’t judge you for making your choice.
@lizdiane456 you are not an awful mom. It makes total sense to me that you might “detach” from your pregnancy as a way to protect you from the hardship you see at work. I was disconnected my entire pregnancy too. I also work with babies, and I referred to my unborn DS as “inside baby” until he was born to denote him from the others. Even after an unmedicated labor (which is supposed to flood me with bonding hormones?) it took me three days to attach to him. You’ll get there in your own time and however long it takes is ok.
@ccmrc143 I’m so sorry to hear about your son’s heart defect. Not the same heart defect and not as rare, but someone I know from college had a daughter with TAPVR that went undiagnosed until she was five weeks old, at which point she underwent emergency open heart surgery. She is thriving today. Her mom wrote up her whole story in blog format if you’re interested in seeing what that experience was like:
Re: Weekly Check-in 4/3
https://apreciousheart.wordpress.com/category/heart-journey/