visit with the specialist

Well......

I don't know where to start.........

We had our appointment with the specialist today to go over how our babies are doing. Ugggg I'm having a hard time putting this into words. It did not go terrible but the news certainly was not good.

Our babies have been diagnosed with TTTS (twin-to-twin transfusion syndrome). I'll copy an explanation from a website so I don't mess anything up.

"Twin-to-twin transfusion syndrome (TTTS) is the consequence of unbalanced blood flow from one twin (the donor) to the other (the recipient) across transplacental vascular communications and results in the polyhydramnios/ oligo- hydramnios sequence and can include growth discordance."

In other words, the blood flow from baby to baby is connected via the placenta. One baby is working harder and forcing the fluid to the other baby's amniotic sac. If untreated, the fluid is drained from the donor's sac and will die of dehydration. The recipient may also die because she can't cope with the extra blood flow so her heart will fail.

What can we do? Well not much right now. Lisa is going on bedrest. Our doctor said that although there are no studies that prove bedrest can reverse the effects, he believes that may play a significant role in balancing out the blood flow between the two babies.

If that doesn't work, there is a procedure that will help regulate the flow by "closing the blood vessels on the surface of the placenta so that the babies' blood is no longer shared." It's called fetoscopic laser ablation of chorioangiopus vessels or FLOC if you want to look it up. The hospital would fly us down to Portland, Oregon for the procedure. I read that is performed/available in only a handful of hospitals in the world. We will be going once a week so the doc can keep a close eye on donor's amniotic sac to see if we need to intervene.

Now....here's the downer and why I was having such a hard time writing this. Against my better judgement, I looked up TTTS and FLOC to see what I could find about the success rate. The specialist told us that the success rate is "very good". "Very good", I'm learning, is a relative term.

I found two case studies where severe TTTS were treated by FLOC. In both studies, both twins survived in 50 to 55% of the cases. One baby survived in 70%. That means that in 30% of the cases, neither baby survived.

I've been staring at those numbers for the past hour. I don't know what else to say.

We're having a hard time with this news. We were cautiously optimistic after the doctor's visit but now after finding some numbers to go along with the diagnosis, we are pretty devestated. We've both had a hard cry tonight.

...right now I can hear Lisa in bed reading a Dr. Seuss book to the babies and it's breaking my heart.

We need your prayers. We love these babies so much. 4 months ago, I couldn't imagine life with a baby....now I can't imagine my life without both of them.

Please pray for us.

Andy, Lisa, and our two angels