Tuesday’s BIG update

Wow, it’s been quite the day today. Lots and lots of news.

We started early again this morning with the fetal echocardiogram. Surprisingly, this was simply another ultrasound – one that focused (virtually) exclusively on the hearts of both twins. They were basically measuring function, size, and anatomy. After about 1.5 hours of measuring, the cardiologist came in and took some more measurements. Both girls behaved really well – they sat remarkably still and allowed the experts to get very clear images.

The cardiologist then went over the results with us. Twin B’s heart – given the TTTS diagnosis – was “on the mild end of the spectrum.” That is to say, rather than having difficulty squeezing or functioning, it appeared that it was doing quite well. He noticed some thickening in the heart, which he said is typically for the recipient (larger) twin. It is most likely caused by the syndrome, and he said it shouldn’t cause us to be concerned. That will continue to be monitored.

Twin A’s results scared us. He said that there is a “moderate plus” size hole in her heart. (Honestly, when he said it I thought, “Good thing there’s a cardiologist in the room, because I’m about to have a heart attack.”) I remember as a kid hearing about babies with holes in their hearts and about how serious the condition is. I think that’s why I was so scared. Anyway, he informed us that this hole shouldn’t cause any harm to the baby while in utero. He told us that typically – in a single pregnancy – a hole might close by itself during the course of the pregnancy. Following birth, they would run some tests to see whether it had closed, and then they would plan a course of action. Then – if need be – they would perform surgery 3-6 months after birth. However, in the case of twins – and especially ones that are going through TTTS – it’s a little different. He said that the more prematurely born they are, the more difficulty we might have with this. If, for example, the lungs aren’t fully developed and there’s a heart condition, too, this could cause problems. For this reason, the longer the pregnancy – and the longer the babies develop in the womb – then the greater the likelihood is that this hole in the heart won’t be problematic. It is, as the cardiologist put it, a “curveball” in the whole process. For those who care to know the details, the technical term is Ventricular Septal Defect (VSD). It’s fairly close to the tricuspal valve, so they said that it has less chance of closing on its own.

At around 2:30 we were able to meet the team of doctors for consultation. They went over the results of the ultrasound, the MRI, and the echocardiogram. All those tests told us what you (now) already know – the enlarged kidney in twin B, the hole in the heart in twin A, and very little (“if any,” they said) amniotic fluid around twin A. We found out that twin B’s Tay (spelling?) measure wasn’t very good – five standard deviations from the mean. The Tay was only one of five measures, and the other four were relatively good. This particular measure has to do with the functioning of the heart; discouraging news but it made us more glad that we are here for the procedure.

Another big concern: they weren’t really sure whether twin A is getting enough nourishment. Apparently, she needs at least 20% of the placenta to survive, and they’re not sure that she has that much. We won’t know whether she does until they go in for the surgery… her survival during and after the surgery depends on that, and they can’t do anything to fix it…

After we battered the team with questions, we ultimately agreed on having the laser procedure take place. It’s scheduled for 9 eastern, 8 central Wednesday morning. We need to arrive at the hospital two hours before the surgery. We picked up a prescription to lower blood pressure – they hope that this will help prevent the babies from wanting to be delivered with tomorrow’s surgery. I think the plan will be for Lisa to stay on that medication until they are delivered. We also found out that Lisa is on full bedrest – no cooking, cleaning, shopping… lots of rest, and this will likely be the case for the rest of the pregnancy. We found out, too, that the follow-up tests after the surgery will be Monday, meaning we won’t get home until Monday night at the earliest.

Things to be thankful for:

1. The girls are still doing pretty well. It would have been really hard to not see one of their heartbeats during the test this morning, but thankfully that wasn’t the case.
2. Hope. Holes in hearts can heal or be mended; twin B’s Tay counts should go up following this surgery. There’s hope.
3. Skype. We had the chance to see our kids today with a video call… and that lifted our spirits quite a bit. Lisa’s talking with Kruesie on the phone as I’m writing this… that’s good medicine for us. =)
4. Things could be worse. At one stop, Lisa overheard a mom going up the hospital elevator. The security guard asked who she was going to see – and she said, “A Make-A-Wish child.” Boy, that would be hard!

Things to pray for:

1. Nutrition. We really want to find out from the surgery that twin A has plenty of nutrition/placenta. Her survival depends on it.
2. Only a small incision. If the surgery goes as planned, there will be only 1 (or maybe 2) incisions that are 1/10 of an inch in size. If need be, they may make an incision that is similar to that of a c-section.
3. Good results. We hope that both babies will adjust positively to the change in blood flow that will result from tomorrow morning’s surgery.
4. No complications. We went over a discouragingly long list of remote possibilities of things that could go wrong. We pray that none would.

We’re still expecting great things from God tomorrow. We know He’s in control, we “He’s got the itty-bitty babies in His hands” (from “He’s got the whole world in His hands), and we know that you’ll be pleading for God’s grace with us.
~Jeff