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.

Frustration

Last night our second opinion confirmed that we are a "severe" case of TTTS (stage 2)and that we are candidates for the laser separation surgery. UCLA recommended that we go to Dr. Quintaro in Tampa Florida "yesterday". This morning we woke up and tried to contact Dr. Quintaro on our way to the airport to catch the first flight out. After speaking to countless unconcerned Florida hospital staff, and after the cancellation of the flight for mechanical reasons, we finally discovered that Dr. Quintaro is out of the country until September 7th. Too long. There are only two known specialist in the States for this surgery, so we are now waiting at home for a call from Dr. DeLia in Milwaukee. We spoke with him yesterday and were impressed with his personal interest in us, so we are hopeful he will call us very soon. Likely, we will fly there today regardless of if when he calls. We feel the need to be there and ready to match his schedule. Thanks Skywest!

While it feels that nothing can happen fast enough, and that it just is not working like we want it to, we simply do not know that it isn't working perfectly in God's eyes. We know that God knows "yesterday" what time Dr. De Lia will call us today. He knows where we will be in 3 hours, 3 days, 3 years. He knows our boys' names. As we do what we can, we rely on
Him for what we can't. We also rely on all of your continuing, faithful prayers.

Here's the science for those who care to follow along with the medical stuff.

Donor: weight 160 grams, 0 amnionic fluid depth, no bladder visible. (does not mean he doesn't have one but that it is not filling at this time. It is an indicator for the stage of TTTS but is not a defect - in fact, it is one of the criteria that qualifies us for the laser surgery).

Recipient: weight 260 grams, 8.4 cm amniotic fluid depth, bladder visible, no thickening of heart muscle visible (which means that he is not too overworked yet, it is good).

Both: No signs of damage or defect. Our boys are healthy now but their food distribution isn't, Which is why we want surgery NOW.

Next update hopefully from Milwaukee.