Hope vs. Frustration

If I had updated every 20 minutes today the story could not have kept up with the reality. So called facts, plans and emotions changed with passing minutes and proved to be hard too keep up with, even when we were required to.

Our highly respected second opinion perinatologist from yesterday (picture Billy Bob Thorton in Slingblade)had the bed side manner of a Russian prison guard. 50 minutes with him yielded about 50 words. He came with such high reccomendation that we hung on each one of them. While we are certain that he must be brilliant, we are equally certain that he will never communicate that brilliance in any useful way. The concerned parents enter nervous and exit flat out scared after the 50 minute russian silent treatment. We were booked on flights to both Tampa and Milwaukee today trying to get this surgery done "yesterday" to save our babies.
After our last post we spoke with Dr DeLia in Milwaukee. He considers our case a possibility for laser surgery, not an immediate neccesity. We now plan to meet with him in Milwaukee on Friday and do the surgery only if it is considered neccessary.

We also received encouraging and helpful advice from the director of the TTTS foundation, who lost one of her identical boys to the syndrome 15 years ago when laser surgery was just being pioneered.

By the end of the day we felt like parents again instead of an urgent weird science project. We sometimes slip into feeling like Megan is carrying around a moon rock in her belly, instead of our first two children. But when there is hope for them we remember that they are two normal, healthy, developing identical boys who only have an environmental problem, which we are fighting to fix. It is the placenta that has problems not our boys. We only feel sympathy, as they have nothing to do with the distribution problem.

We could have never imagined the depth or breadth of your prayers. Some of you have shared that your prayers for these babies have been the most pleading you have prayed, others that God has not heard so much from you in a long time. God is hearing prayers from churches I had never heard of. We are touched beyond what I could express even if I were less exhausted. Also, the action that you have offered in support of us, your calls, e-mails, they are our safety net. We answer when we can, but we always appreciate your active and heartfelt support.