Perinatal appointment

I'm mentally and emotionally exhausted today, so this will be brief and to the point.  We had our perinatal appointment today with Dr. Drake.  I've met Dr. Drake several times over the years as we have had mutual patients in the ICU, but never did I think I would be one of her patients.  She recognized me and had no idea that the person whose file she'd been reading was mine.  I do have to say that being in her care makes me feel good as I would never hesitate to send a family member to her.  

Today they did a detailed echocardiogram (heart ultrasound) and looked at baby's anatomy.  We got some "good" and bad news.  Here's what we learned, in order from the most worrisome to least: 

1. Growth retardation:  They have used our first ultrasound date to reset our due date to February 6th, which put the pregnancy at 22w5d today.  The baby is only measuring in at 19w5d so baby has a pretty significant growth restriction, which we knew.  Baby's head is only measuring at 16w6d which is a result of the brain defect.  Dr. Drake seemed to think this was likely the most worrisome problem as many babies with such severe growth retardation don't survive pregnancy.  She told us she was very afraid we would come in some day and not find a heart beat.  We've known this whole time that losing him before birth could be a possibility but we still have to carry on. 

2.  The brain defect (encephalocele) is fairly large and does contain some brain tissue (which isn't a good thing).  There are abnormalities with baby's brain, too, likely due to the encephalocele.  The mortality rate for encephaloceles is 30-45% but our baby has a likely worse prognosis because there are so many defects. 

3.  The heart, from what she could see, looked like it was just the small hole between the ventricles.  She wasn't too concerned about this because 80-90% close before birth and if they do stay open to birth the defect isn't usually symptomatic.  She did caution us that the heart is still small so she couldn't see everything and the possibility exists that there could be more but as of now, it looked like there was the one defect only.

4.  Cleft lip: It seems baby has a cleft lip, we are unable to tell at this point if there is a cleft palate as well because baby is so small.  This is a pretty minor concern as it can be dealt with and isn't life threatening. 

5.  The right hand seems to possibly have some abnormalities in positioning, but again, baby is so small at this point that the images are hard to see.

6.  Dr. Drake told us that if at any point I'm in danger because of the pregnancy and I start to get sick, then we deliver baby to protect me since baby's prognosis is so poor.  She didn't think that I was at danger but also stated that chromosome disorders are sometimes unpredictable.

All other things were talking about referrals to Iowa City, where we go from here and how to proceed the next few months.  If at any point I don't feel baby for 24 hours we have to go in to make sure baby is okay.  Dr. Drake also wanted to make sure we were okay emotionally, as much as we could be, and it meant a lot that she addressed that with us and not just all of the medical jargon. The plan at this point is to do ultrasounds every 2 weeks right now and at the next appointment on 10/22 we'll talk about a referral to Iowa City. 

And the most fun thing about today.  We found out a couple weeks ago that we're having a baby boy.  He is our little Simon Leo, one we're so in love with already, the little boy so many have been praying for.  Tanner is quite excited that he is finally getting his brother.