March 5, 2012 - Confirmation of the Diagnosis

If you remember, when we found out that our baby's ultrasounds was abnormal, Jason and I were about 1000 miles apart - neither one of us at home.

I was able to get an appointment on Monday with a perinatal specialist that I was referred to and Jason was able to change his flight home to join me at my appointment.

We sat in the ultrasound room with the ultrasound tech for a very long time looking at our baby on the screen and wondering if she was ok. She took us through a lot of measurements and told us a lot of things that it didn't look like our baby had. We were feeling pretty optimistic until the doctor came in. He sat down, looked at the monitor for a few seconds and declared that although the baby's development was on course at this point, she had a "severe case of fetal hydrocephalus." He then proceeded to point out a black mass of fluid in her head where her brain should have been.

The doctor asked if we had questions - which we really couldn't wrap our minds around. He outlined options for us - terminate the pregnancy, more test to rule out other birth defects, etc. I was prepared for the question of terminating the pregnancy; Jason was not. I had read about it on several blogs over the weekend. However, terminating the pregnancy was not an option in our minds. We initially decided to opt out of more tests at that point and take a wait and see approach. Most of the tests offered were to discuss causes and try to get a clearer picture of her possible prognosis. However, since none of these would change my prenatal care at this point, we did not feel the need to pursue.

We held most of our tears until we made it to our car. I will never forget what Jason said as we struggled to pull ourselves together: "She may not be perfect, but she'll be perfect for us." And he's right.

We knew that we would need an inordinate amount of strength to get through this journey and that we could not do it alone.

Isaiah 41:10 Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.

February 29, 2012 - The Phone Call That Changed our Life

Typically, there is something exciting about February 29, right? It's Leap Day - and extra day in the year to spend doing something fabulous. February 29, 2012 found me in Austin, TX for a Health Care conference and Jason at the airport, on his way to Des Moines, IA for a wrestling event. I had just had my 20 week ultrasound 2 days prior.

I checked my phone between sessions and found a message from my doctor on my voicemail. I called Jason and told him I was a little bit freaked out because typically the doctor doesn't call - it's the doctor's office staff. I never understood the statement, "my life changed with a phone call" until I called her back.

She told me that the ultrasound results looked "abnormal." Of course, I wanted to know what that meant. I could tell the doctor was hesitant to tell me over the phone, but she told me that she wanted me to see a specialist - a "perinatal" - to look more closely at our baby's development. She was especially concerned with the size of the ventricles of her brain.

"What is that an indication of?" I asked.

And then she said the life-changing statement that still haunts me... "We think your baby has fetal hydrocephalus."

After hanging up, I googled hydrocephalus on my phone and read all sorts of extremely scary things about it. I called Jason shortly after and told him the news. I think we were both in shock and weren't sure what to do or say to eachother. The fact that neither one of us was home and that we were so far apart from each other made the situation even more difficult and we both suffered in silence for the next several days until we could be together and confirm the diagnosis.