Experimental surgery

Most women learn their child has Spina Bifida after taking some of the prenatal tests that are offered around the 16th week of the pregnancy. The Designer and I were not interested in those tests. To be completely honest, we really couldn't see the point of them. For us, if there was something wrong, we were not going to abort. We also knew that there was a fairly high false positive rate, and the added stress of that was not of interest to either of us. So, we declined the test.

Had we had the test, we would have known about 3 weeks earlier than we did, about Grace's Spina Bifida. Since we didn't have the test, we were very fortunate to have an excellent OB that was paying exceptionally close attention and noticed something that didn't look quite right. However, since we didn't know until we were about 21 weeks pg, we had to move quick to be eligible for the MOMS study as the fetal surgery must be performed before the end of the 24th week of gestation.

We contacted MOMS when I was almost 22 weeks along. We were on a huge time crunch. Not to mention that it was the very end of the school year, so things were hectic for me at work too. When we learned that we were eligible for the study, we had to make arrangements to fly out to California to have the final approval after being thoroughly examined physically and mentally. They wanted to make sure we could withstand the trauma that we could/would face during this study.

Leaving for CA for so bittersweet. We were so hopeful that something great would happen. We were optimistic that they could "fix" our daughter. However, there was sadness because if we were selected for the fetal surgery, I would no longer be living in Colorado when we could leave California.

Let me explain...we were planning to move to Michigan in August of 2004. At this time (the end of May, beginning of June) we were still living in Colorado. If we left for California and were randomly selected to have fetal surgery, we would have to stay in California until the baby was born. Since I was only 24 weeks pregnant, the hope was that the baby would stay put until I was at least 32 weeks. Then, we would have to stay there after her birth for up to 4 weeks, to make sure she was okay. If this were to occur, all of our stuff would no longer be in Colorado, as The Designers parents were set to come out, pack up our stuff, and move us to Michigan during that time frame. So, I was very sad to leave for California for fear that I wouldn't ever be back.

After saying all of my goodbyes to my friends, our house, our church, my doggie, the only state I had lived in as an adult, my wonderful job and so much more, we headed for the airport. We had a very early flight and arrived in California early that morning. It was a long day. It was a long weekend.

We were unsure of what to expect really. We just knew that there was so much up in the air and so much at risk. We prayed a lot. We wanted God's hand in everything we did.

In the next post I will include the first email I sent out to all of our loved ones explaining our trip.