I know. Here I am, 20 weeks pregnant with twins, and posting on my grief blog. You might think it’s because today marks the anniversary of my spina bifida PPD, but it’s not. I’m back.
Honestly, I don’t know if I am *back* or not, but we did get another poor prenatal dx. I don’t know all the details, but there is a brain anomaly with one of the babies. It would be nothing, or could be serious, or it could even be fatal.
So far, we know nothing. No details. I had an amnio on Monday and have an MRI and meeting with a pediatric neurologist on January 2nd. Does that date ring a bell for any of you? It’s the date we started the termination for Baby M.
And people tell me not to be superstitious.
I’m hoping I get the FISH results today, but as I well know, the holidays are a bad time for getting medical advice.
I was frantic on Monday because I was 19w3d. Texas has the 20 week cut off. BUT, it’s measured by conception date, not by LMP, or something like that. All I know is that if we were going to terminate in Texas, we would have to start the procedure on Monday.We’re not ready for that.
I have to wait for the answers (at least, what answers we’ll be able to get prenatally) before I can make a decision that big again. My genetic counselor is putting phone calls in to an out-of-state clinic to ask the rules and regulations for selective reduction in the case it comes down to that, but at this point, we are still hoping for good news: that we will be on the minor end of the spectrum.
I’ve been talking to people online about the dx and how it affects THEIR kids, but really, I don’t want to know that – I want to know how it will affect MY SON. And no one can answer that until after he’s born and we start to see how he meets or misses his milestones, how he interacts with other people. We should get a clear view when he starts school.
If this were the only bump in the road that we had encountered in the last 3 years year, I think I’d be able to be more positive about it. But people don’t get it. Sure, we could end up on the easy side of the spectrum, but historically, we need to look at the worst case scenario.
Some people seem to be hoping for a false positive, and while I secretly dream about that, it’s not realistic. My anatomy scan (NOT A GENDER SCAN for all those assholes out there who have no idea how traumatic an anatomy scan can be) was done in 3D at the MFM’s office. Baby A’s CC was clearly formed. Baby B’s was not there. You can’t blame it on the machinery – it’s not like this was some shitty 2D stuff at the OB’s office. I just think I’d be setting myself up for more disappointment if I really allowed myself to think that there might be a false positive. Besides, I’ll know soon enough anyway.
I just wanted healthy. Why is that too much to ask for? Why is it the things that other people take for granted are the very things that my husband and I have to fight for? How much more can our relationship take? How can we afford another medically fragile individual in the house? How would we be able to meet our daughter’s needs if our son ended up being on the bad end of the spectrum? How could I love with the guilt that I allowed him to suffer? I just want him to be happy and healthy.
I thought spina bifida was a grey area. I had no idea.