A 4 AM heart to heart

See what I did there with that blog post title? Started with my insomnia to subtly give the lead into the tale of our heart baby... At 4 AM, that seems like a brilliant creative breakthrough.

The ultrasound is in 6 hours. Not that I'm counting.

Really, this post should be titled, "Why you should never go to an US appointment alone"

So I scheduled the echocardiogram and the 20 week ultrasound. Unfortunately, the only date available was a day my husband had a business trip out of town. "No problem," I breezily told him. "We've already had the crisis of our pregnancy, with the NT scare, this will just be routine, and yo.u'll get to see the baby again at 24 weeks, when I have the next US."

This was a Bad Idea.

The echo and US combined took forever. I was happily enjoying spending so much time watching my little one wiggle, until the parade of bad news started:

US Tech: "Baby is measuring small"

Cardiologist: "I can't get the best picture, but I'm almost certain your baby has a major heart defect. Either a ventricular septal defect (VSD) or, more likely, an AV canal defect, which will require surgery soon after birth."

Fetal medicine specialist: "Oh yeah, there might also be something wrong with your baby's feet and have you ever heard of the really scary diseases called DiGeorge and Noonan's syndrome?"

Cue terror and waterworks. Although I was very proud of myself for holding it together long enough to ask many, many questions about open heart surgery (or OHS, as the cool kids call it) in infants. Which was generally reassuring. Except for that whole MY BABY HAS A GIANT HOLE IN ITS HEART AND IS GOING TO NEED OPEN HEART SURGERY!!!

Crying at the doctor. Crying on the phone with my husband. Crying at work. Crying on the shoulder of the friends who were amazing enough to come keep me company that night. I was a mess.

Fast forward to today: we have since confirmed an AV canal defect, A.K.A. atrioventricular septal defect (AVSD) and learned a lot about treating it. Basically, that's all a good news story, Prognosis for surgery and life after surgery is excellent. I can totally wrap my head around the heart thing. Scary as the thought of someone cutting into my tiny baby is (you should see the pictures of the scars on the internet. Seriously, google it), I feel pretty confident that we can take care of the AVSD and move on with our lives. Hellish year and then back to normal.

So why am I up at 4 AM stressing about the US?

Well, two main reasons. First, it's now been a long string of really craptastic doctor's appointments. So every appointment feels roughly like standing on the edge of a giant crevasse, waiting for someone to shove you (and this from someone with terrible fear of heights and vertigo!) Just waiting for the other shoe to drop... I'm preparing myself for news of club feet, intrauterine growth restriction, and a host of other problems to be revealed at yet another doomsday appointment. (At least I'll have the moral support of my husband this time!)

Second, or maybe just 1B, I have become totally paranoid that the baby may have DiGeorge syndrome. Other than the heart defect, (and AVSD is not closely associated with DiGeorge, although heart defects in general are) and the brief mention by the doctor, I have no reason to believe this, I just can't shake the worry about it. And DiGeorge would be a Big Deal. A Bad Disease. One that I'm not sure we're equipped to handle - which leads me down a road I can barely think about, especially as I write this and the baby is doing little flip flops in my belly. Hello, bean.

So what's the game plan? Ask at the US to look for other signs of DiGeorge - lack of thymus, cleft palate, etc. (Didn't see any sign of cleft palate at the previous US, so that's reassuring.) If paranoia continues, consider amnio, although after my CVS experience, this is not high on my list of must-have experiences. Try to breathe.

Only 5 and a half hours to go...