Thursday, January 26, 2012

Last appointment... so now we wait.

We saw the pediatric neurologist today.  He told us that they did not see anything additional on the MRI, which is excellent news as it means we are much more likely to be in the category with less dire outcomes. If you're interested, this paper provides a pretty good summary both of their own findings and the literature.  So at this point it's just a waiting game - we will do another MRI post-birth, and hope that they don't find anything additional on that either (the fetal MRI can be a bit of a guessing game b/c the fetus is moving around so it's hard to get perfect images). 


We have another u/s in 2.5 weeks to check on the status of the kidneys; the would consider early delivery if those progress, as fluid in the kidneys if it builds up too much can cause a dearth of amniotic fluid (which is essentially the baby's urine), and can also cause kidney damage. I am hoping that since truffle's kidney size was relatively stable between 18 and 28 weeks that it will remain that way - having to deliver him prematurely is definitely not ideal, I think that the extra cooking time is even more important for him than someone without brain abnormalities. I have a feeling that as long as the post-birth MRI comes back clear, we won't know for a long time what we're dealing with, as a lot of the issues that these kids have do not necessarily show up in the early days. 


One thing from the paper that I referenced that took us by surprise was that in the group with isolated agenesis, 60/87 chose to terminate, and in the group with additional brain abnormalities, 70/88 chose termination.

8 comments:

Rebecca said...

I'm glad they didn't see anything additional on the MRI, but I'm sorry it's such a waiting game. I'm sure it's tough not to know exactly what you're dealing with. Keeping my fingers crossed that the kidneys don't show signs of worsening at the next ultrasound...

sarah (SHU) said...

so glad they didn't find anything else. and things could absolutely look better on the real MRI! those stats are pretty shocking but i'm pretty sure in the USA things would be different (it looks like that was a french study). huge cultural differences about those kinds of decisions . . .

Spindoctor said...

Glad the findings are promising. So sorry you won't have any real answers for a while. I hope you guys get the best outcome possible under the circumstances. Hugs, Erica

Nico said...

Sarah, I think you're right about cultural differences playing a part - but God, I just can't even think about it since I'm feeling him all the time, and I would feel so guilty afterwards with all the what-ifs...plus I cannot imagine telling the boys there's not going to be a brother after all. Well, I can imagine it and it makes me cry every time.

Martha said...

I am SO GLAD to hear this news. I am hoping for the absolute best outcome for you and Truffle.

I am shocked at those termination numbers given the prognosis - really shocked!

Ceejay said...

Nico, I haven't gotten a chance to comment, but I've been following along with what's happening. My heart goes out to you and your hubby with this news, and I'm so glad it seems like it won't be as bad as it could be. Those termination numbers are shocking! I can't imagine choosing to terminate that far along in pregnancy! Anyway, I'll be continuing to follow and cheer you and Truffle along! He's going to be a very special and very blessed little boy with parents who already love him so much!

Anonymous said...

http://thebuggslife.blogspot.com/

this little guy has that condition, and as you can see, he is such a blessing to his family!

Nico said...

Anon, thanks so much for pointing me to that blog!