A Rough End to 2010

Yesterday was a rough day. I'm so, so glad it's over. As you may remember, Brad and I scheduled a follow-up amnio for yesterday morning, just in case Claire's lungs had matured. At worst, we expected that her lungs wouldn't be mature, but we would at least leave the hospital with an idea of where they were, numerically, on the scale of "immature" to "mature," and how they had progressed since my last amnio on December 20th. (On December 20th, they were a "12," with "50" being a "passing grade.")

Little did we know that yesterday would be much worse than our anticipated worst case scenario . . .

To begin with, the amnio was terrible. My last two amnios have been quick and easy (5 minutes or less) and relatively painless. This time, the amnio took 15 minutes and was extremely painful. I later learned that Claire's thigh moved into the fluid pocket just as my doctor inserted the needle to collect the fluid. He then had to take additional time (and apply lots of pressure, which was very painful) to try to get her to move her chubby little leg. She refused to budge, so we ended up with only a small sample of fluid.

To add insult to injury, the fluid was blood-tinged, so the lab could not run the quantitative test (giving Claire's lungs a "score"), and instead had to run a different test which only gave a "positive" or "negative" result. To the surprise of no-one, the result was "negative." So, rather than having a number that would allow us to gauge Claire's lung maturity, we were left with nothing more than a big fat "no."

Then, at the end of the amnio, the sonographer struggled to find Claire's heartbeat. It took her 3 minutes, and Brad and I heard panic in her voice as she repeated "c'mon, baby." Definitely a scary moment.

If that weren't enough, the amnio caused me to have contractions, so my doctor decided to keep me for observation for an additional 6 hours. I couldn't feel most of the contractions (I was hooked up to a monitor that told my doctor I was having them), but lying on a tiny hospital gurney for 6 hours is not exactly comfortable.

In the meantime, my doctor decided to do some research into possible syndromes that Claire may have. Anytime a baby has more than one anomaly, it is reasonable to suspect a syndrome. Up until Tuesday, the fluid on Claire's brain and left kidney were the only two anomalies that doctors had found. Then, on Tuesday, the sonographer noted that her limbs were measuring about 3 weeks behind. When we discussed this finding with our doctor, he suggested that it may just be that Claire is a small baby (after all, her abdominal circumference measured 2 weeks behind, and Brad and I aren't exactly tall people). However, yesterday, he seemed more convinced that Claire's short limbs could be part of a syndrome.

He did some research, but he could not find anything linking hydrocephalus, kidney issues, and short limbs. He noted that most of the "usual suspect" syndromes also include heart defects, and Claire's heart looks just fine. In fact, he hopped on the ultrasound machine and showed us all of the "nice" things about Claire's heart, her stomach, her liver, her fingers and toes, her bones, and every other square inch of her tiny body.

Nonetheless, he decided to have the "some syndromes are incompatible with life" conversation with us. We have had this conversation before with our other doctors, and we realize that death is a possible outcome, but it is still a very difficult conversation to have. I decided a long time ago to be prepared for the worst but hope for the best, but I've always stopped short of letting the fear of this possible outcome overtake me. Yesterday's conversation brought that fear straight to the surface.

It has taken me most of today to get over the conversation, and it has only been thanks to much love, support, and wisdom from my family and friends, including my best friend (and husband), Brad. So, thanks to everyone for your messages yesterday. Though it sounds trite, they truly meant more to me than I could ever hope to express.