August 27

Friends,
24 hours ago we learned that our twins are identical boys, and that they are affected by a syndrome/placental disease called Twin to Twin Transfusion Syndrome (TTTS). It means simply that they have a food distribution problem. They are still in two separate amniotic sacs, but share one placenta. I'll spare the rest of the medical details for now, but what it means is that our boy on the left (the one we called the crazy one because of how active he has been) is being over nourished while our boy on the right is being undernourished. So much so that at 18 ½ weeks the big one is 60% bigger than the little one, or 8 oz. and 5 oz. Left untreated neither is likely to survive.

We are just now learning much of what we need to know about TTTS so some of this info may be inaccurate or flat out wrong. But if you are interested there is unending info at the TTTS Foundation link at the top of this page. For now two treatment options are being considered:

1. Amniotic Reduction: we will almost certainly do this treatment regardless of the other. It is a simple reduction of the amniotic fluid in the big one's sac which temporarily relieves his organs from overworking and reduces pressure on the smaller one's food supply so that the food distribution may equalize to some degree. This is the standard treatment of most all TTTS cases but may not be enough for severe cases.

2. If further diagnosis shows that we have a severe case, and are good candidates we may do the next level of treatment. Dr. Soffici's impression is that we may be in this category and might benefit from this procedure, which involves using a laser to disconnect the shared food supply so that each twin gets his own food supply, as non-TTTS twins would. If successful, it actually cures the syndrome. This procedure would be done at UCSF.

We are going for a second opinion on Monday at UCLA with a perinatal specialist that Dr. Soffici recommended, which may steer us toward or away from the laser procedure. All treatments have varying levels of success, based on a lot of factors. As of today, we don't have enough information to know which procedures or outcomes are likely for us.

We are utterly and fully in the hands of our good God. We, in the course of a couple of hours, went from proud, if nervous parents who "routinely" prayed for their twins' health, to dependent, scared parents who pray gasping and sighing, wet, loud, and embarrassing prayers. Desperation prayers. And when we open our eyes we see our blurry family. We already cry as much for the sweetness of your support as we do for the fears of the possible outcomes. When we consider those outcomes, we are only glad to have each other to survive with, if all else fails. "If all else" is a long list ranging from bringing two healthy, if unequally sized boys home with us, to losing one or both of them, to bringing home one or both with disabilities. Yet, there is wonder-working power in the blood of Jesus.

This is our first web site. It is not as cheerful as we would have planned, but here it is. It is not a private site; it is open to all who will pray. It may be alternately too boring and too bleeding, to prosaic or too poetic (like now), but our hope is that four months from now it will be a well-documented story of a miracle.

Our most heartfelt thanks for all the time, talent, resources, love and care that so many have already offered. We are lost without it. Thank you Matt and Chris for setting up this site and passing on the wisdom from your own previous trials. We will try to update this site regularly which hopefully will be an easy way to update on a more regular basis, than we possibly could otherwise.

Use the envelope link in the lower right corner to e-mail this to anyone who would care to see it.