More Tests

So along with the extra ultrasounds and fetal monitoring, two of the things my MFM doctor wanted was an MRI of the baby to get a better idea of what we are looking at and a referral to a pediatric cardiologist to evaluate baby's heart.

The MRI

The MRI ended up taking 2.5 HOURS (agh!) because baby would not hold still long enough for some of the imagining needed and they just had to wait until they could capture it.

I stayed mostly comfortable and calm and the tech was great and kept me updated throughout the long process.

Right after the MRI, I went in for an ultrasound which lasted another HOUR.

I was so tired of being on my back, ready to move around, and was definitely hungry.

The results of both of these were relatively unremarkable.

The MRI did confirm the cyst on the brain (that was seen on ultrasound), but other cranial structures were normal and one of the things they were also looking to evaluate further was the stomach, which they are still not finding on imaging.  Baby's limbs were confirmed to not be growing below the elbows and knees - so basically no lower arms, legs, hands or feet.

It's so hard to think of that!

Because what's the first things parents look for when the baby is out?  10 fingers, 10 toes!  Right?!  It's like what comes with every report of a baby's arrival.  It's just so hard for me to fathom that we won't get to hold those precious figures or kiss those toes and that I won't be able to get/have hand and footprints to keep once they're gone.

It's all still very hard to wrap my brain around and I have many moments of "how is this our reality" happening.

The Pediatric Cardiologist

This has been the strangest visit we've had because it's as if this doctor hasn't read the full story.  He was specifically focused on and evaluating baby's heart (which is his role) but not really engaged with the full story, like it was as if he didn't know our baby would die. 

We were referred because there was a narrowing of the artery that leaves the heart, and he could see that on the cardiac ultrasound.  But he kept talking to us like this could be fixed after birth....again completely unaware that this baby won't make it.  It was actually really frustrating to feel like he just didn't get it.  So on the positive side, baby's heart is functioning just fine and there is not so much of a concern that it will be an issue BUT, again, little chance of life outside the womb because of the other complications.  We're scheduled to go back for another appointment in a month 

This post is pretty brief because we're doing a lot of evaluations but getting basically no news, no good news, and no answers.  It's all such a mystery.

Right now, we're just taking it one day at a time.