Watching and waiting

Hello everyone,

Jon set this blog up for me a while ago, but I was terrified of actually posting things to the world. But with our recent events, there are many people that want to know what's going on, and I'm not doing a good job of keeping everyone updated. So here goes . . . . Courtney blogs.

As you probably already know, we are having triplets. You may not know that they have names now: Matilda, Anna, and Noah. Anna and Matilda are identical twin girls, and Noah is a boy. Anna means "grace," Matilda means "strong and fierce in battle," and Noah means "comfort and peace."

Two weeks ago (it seems like yesterday), Anna and Matilda were diagnosed with twin-twin transfusion syndrome (TTTS). This disease is wretched. From an email I sent to many of you:

"I have sad news. Our twin girls, Anna and Matilda, are very sick with twin-twin transfusion syndrome. This disease is an awful one because it is a disease of the placenta, and the babies themselves are fine until the disease progresses. Basically the two have connections through their placenta so that one pumps “used” blood into the other. The donor works too hard, gets small, and stops having any amniotic fluid while the big one has to deal with having too much blood and with the “bad” blood, causing heart issues. If left untreated, both twins would almost certainly die.

Luckily, our doctors caught this disease early, allowing us to seek treatment before problems such as brain damage occurs. As you may know, Jon and I had been made aware of this disease early on and had a plan of action. Our plan was to go immediately to San Francisco, where there are world’s best fetal doctors, to have a procedure done to cure the disease. This treatment is a laser surgery that seals off the blood vessels connecting the twins and tends to work really well at curing the disease. Unfortunately, it turns out that in our case, there are additional factors that make this treatment unacceptable, in particular the fact that early labor caused by the procedure (a 10-20% chance) would injure Noah, the boy, who is at this time perfectly healthy. "

The other options are serial amnioreduction, which does not cure the disease, but does seem to improve outcomes (they can't get much worse) and selective reduction of one or two fetuses.

We went back for another ultrasound on Monday, and amazingly and unexpectedly, both twins looked better. Anna, the smaller "donor" twin, had now 3 cm of amniotic fluid where she had less 1 cm before. Matilda, the larger "recipient" twin, had a less dramatic improvement, but it did appear that her blood pressure had gone down some. Due to this improvement, the doctors, Jon, and I felt like we should wait on doing anything and see what happened if we waited a few more days.

In the meantime, the hospital lawyers stepped in and said that since none of the twins was in immediate danger of dying and my health was not in immediate danger, then selective reduction at this late stage was unacceptable. Jon and I weren't too upset as we had dreaded the idea anyway, especially with the twins doing better. It was disconcerting, however, as the surgeon had originally had stressed that he felt that this option was our best chance at a good outcome.

As far as I can tell, it is fairly rare for TTTS to get better, and when it does, it is a good sign. The babies can be delivered relatively safely at 28 weeks, which is now only three weeks away. They will obviously still be premature and have to stay in the hospital for quite a long time, but if they stay healthy and in the womb until then or longer, then their chances appear to be pretty good. Given that information and assuming that they are not dramatically worse tomorrow, we will go home for the long weekend to regroup and repack. Then we plan to come back San Francisco for the long wait so that if they are born before 28 weeks, they will have the best care we can provide them. As far as I can tell, UCSF has one of the best centers in the country for taking care of sick premature babies, especially ones with cardiac problems like Matilda's, and we are grateful that we have the option of taking advantage of it. At 28 weeks, we'll re-evaluate the options and decide whether it's worth staying in SF or going home.

So that's what's going on and the plan. As you all probably know, I find having a plan very comforting. I am also learning that none of my plans have worked out lately so I will continue to learn my lesson in flexibility.

We really appreciate your thoughts, support, and prayers. And if any of you have a friend with an empty condo in San Francisco, let me know.

Courtney