Thursday, May 27, 2010

Flashback: Pregnancy

To tell the story of Gwena's CF I have to start with the pregnancy. Jon and I had gotten married in July of 2008, and we were living in Hawaii, where we had until recently been going to school. We found out I was pregnant just before we moved from our tiny 300 sq ft apartment into our "huge" 500 sq ft apartment (on the 4th floor of the building with no elevator). It was close to the hospital, just a few minutes walk, so we walked to all of our prenatal appointments. My due date was October 9th.


At 19 weeks we had our 2nd trimester ultrasound. We found out our baby was a girl (there went Gilgamesh as a possible name!) and she had a strong heartbeat, good movement, well-developing brain, etc etc. When the tech came to her bowels he spent a lot of time looking at them and not saying anything. He marked the pictures he took with a question mark. This didn't exactly put us at ease.

The doctor came in and looked, and explained to us that they were seeing "echogenic bowel" on our baby's ultrasound. This means the bowels were showing up brighter than they should, which meant they were harder than they should be. Several things could be causing this, so they would do some tests to try to find out what it was. One of the possible causes was cystic fibrosis.

A lot of waiting followed. We had to wait for my insurance to approve the carrier test, then we had to wait for the carrier test results. They called me one day while Jon was out and told me the result was positive, I was a carrier. (Or as my sister said, the result was positive in a negative way.) I cried my eyes out that day, even though Jon hadn't been tested yet.

Sometime in the midst of all of this, Jon and I both lost our jobs. Hawaii isn't the cheapest place to live, especially when you have no job, so when Jon's search for a new job proved unfruitful, we began to plan an emergency move back to California. We already had plane tickets for July to visit our families, so we decided not to come back. This added no small amount of stress to our lives.

We spent most of our first anniversary packing boxes. The next morning Jon shipped our things while I was at the doctor's having a 3 hour glucose test. The next day we got the carpet cleaned, I got a Rogam shot, and then in a fit of insanity we went to see the midnight premier of Harry Potter 6. The next morning we handed over the keys to our landlord and left. Somewhere between the apartment and the airport, they called to tell us Jon's test result - he too was a carrier of CF.


We both carry the same mutation, the most common one, Delta F508. There is a 25% chance that any child we conceive will get both mutated genes and have CF. We declined an amniocentesis, deciding to wait until our baby was born and have her blood tested then. We spent the rest of the summer moving back and forth between our two families' houses, looking for a job for Jon, and going to many doctors' appointments. The baby's bowels got less and less bright, until it was almost unnoticeable. We hoped and prayed that she wouldn't have CF, knowing it was very likely that she did.

The story of Gwena's birth will follow soon!

Sunday, May 23, 2010

Why not begin with fish biscuits?

So, this is my "this is my first post" post. If history is anything to go by, I probably won't keep this blog up for very long... but perhaps a miracle will happen and I will keep posting on it!

It's 1am right now, and I am awake because I'm baking fish biscuit cookies for the Lost finale tonight. They look awesome and they're not even cooked yet! Jon and Gwena are asleep, lucky ducks. Curse my Chronic Procrastination Syndrome! (It's a real disease, I promise!) (No... no it's not.)




The finished product: