MRI Update

After waiting weeks for the MRI because it "doesn't rely on fluid for imaging" the results finally popped up in my online chart and almost every finding was "hampered" or "difficult to discern" due to "lack of appreciable fluid"

Of interesting note, her lungs were gestationally as expected in development, etc despite already having been without fluid for 6-7 weeks at the time of the MRI.  They also observed normal meconium among other random thoughts on gallbladder (seen), spleen (maybe seen), brain (not just seen or normal, but "grossly normal" whatever that means) and other notes (anatomy difficult to see, particularly the pelvic area- more not seen than seen- all attributed to lack of fluid).



One things that caught my eye is that they only observed a 2 vessel cord on the MRI, even though a 3 vessel cord had been seen on ultrasound earlier.  This is interesting to me because Kenna had an asymmetrical cord that appeared as 2 vessels in some places and 3 in others, depending on which cross section was looked at.  Of course they also noted (again) that the umbilical cord was difficult to see due to lack of fluid surrounding it.

In regards to the kidney/bladder specifically they indicated that they could not be definitive if they were observing agenesis (absence) or another abnormality.

We were told that they wouldn't know which until they did an autopsy (yes, they continue to be completely morbid) but then they say the reason she won't live is because of her lungs, which the MRI notes are "normal in signal characteristics".   Obviously that says nothing about how they will or won't continue to growing the next few weeks here or how they will respond to actual breathing, but it seems a long way from destined to fail immediately.   We know she is doing her part strengthening her diaphragm with lots of practice breathing and has even had the hiccups a few times.    I did have steroids for her lung development at 23 weeks, and I may have them again closer to delivery.  Amnioinfusion has not been ruled out, although it is being debated and weighed in on by the entire maternal fetal medicine team right now.

I have a consult with (I presume) neonatology and another appointment with MFM next Tuesday and I'm hoping I will have a more definitive plan to share.   Interestingly they made the appointment with a different doctor than I normally see, which makes me a little bit nervous, and I'm hoping isn't a sign that they are trying to talk us back into the sit around and wait for her to die without even knowing whats wrong plan.

But, yes, we are going back to Mayo.

At the end of the day, the neonatologists there have honestly said from the beginning that they just don't know what her needs might be and it might not work, but it is possible there might be something they can do to help her.

And if there is even the tiniest hope (medically speaking) than that is where we want her.

4 comments :

Angie said...

Sharing the update and continued prayers.

Brenda G said...

This girl is a fighter and she is teaching those doctors to quit underestimating her! Keep up the awesome work, Siena!

PS - I'm thinking of work stuff here now but I'm pretty sure grossly normal means that it's normal without signs of a problem.

Theresa Martin said...

keeping up the prayers!! God can do all things!

Tearri Rivers said...

All of the commenters said what I was going to say :) Prayers going up!