Twins Update

**Updated Thurs, July 26: At our appointment today, our babies showed new problems and had reached Stage 2 if not Stage 3 of TTTS. So we are back in Seattle to have the laser surgery tomorrow (Friday).
*There are so many details of what is going on with our twins, and I assume most people don't need to hear the specifics, but I wanted to document a little for ourselves and those who are interested in the rare condition we are going through with our pregnancy. We haven't been very good at updating people, because there are always so many details to consider and we are usually too exhausted after long doctors visits to call people and repeat everything. So hopefully I can explain a little here.

 For the last 6 weeks, we have been going in for weekly ultrasounds to monitor the twins since they were discovered to have signs of TTTS (a condition of the shared placenta in monochorionic identical twins where the amount of blood/ nutrients they receive is unequal). Each week, we would see a change in fluid levels- the larger sac (Baby A)gained fluid and the smaller one (Baby B) lost fluid- but not enough for an official diagnosis of TTTS. To be in Stage 1, the fluid levels must be greater than 10cm in one and less than 2cm in the other.

 With TTTS, the baby who receives too much blood has the risk of overworking his heart and kidneys to process it all, to the point of potential heart or kidney failure. His body can become swollen and it produces lots of urine, which makes the high level of amniotic fluid. The other twin doesn't receive enough blood, which could cause failure of his heart and kidneys as well, and he produces a very small amount of urine and can potentially become dehydrated and anemic. Stage 2 of TTTS is marked by the smaller twin's bladder becoming too small to be identified on an ultrasound.

 At 22 weeks, baby A had reached 10.5 cm of fluid but Baby B was holding strong with just over 2cm, keeping them barely out of an official Stage 1 diagnosis. Still, week by week we watched as our Baby A kept getting more and more room to move around, and Baby B got "stuck" in his tiny amount of fluid.

 Last Thursday, at 23 weeks, Baby A was at 11 cm and Baby B was at 1.9, putting us officially in Stage 1. Our doctors had discussed our case in a meeting and the consensus was to send us to Seattle to consult with specialists who perform a surgery called Fetoscopic Laser Photocoagulation (where they put a small telescope inside my uterus to examine the placenta, identify which blood vessels are shared between the babies, and cauterize them). It is a very rare surgery and we are fortunate to live within driving distance to one of the 5 places in the nation that performs it. These doctors see more cases of TTTS than anyone here, so we were glad to get their opinions.

 We went to Seattle prepared to have the surgery if that was the decision. Our appointment was Monday morning, and in the 4 days between appointments, Baby A's fluid had gone from 11cm to 15cm. I could really feel this big change. Over the weekend, I had become so uncomfortable. My belly became even more huge and tight, tender to the touch, and it hurt all over when I coughed or sneezed. My lungs and stomach felt compressed and I could hardly walk very long or hold Collin. My back hurt all over and I couldn't get in a comfortable position at all. I was never this uncomfortable during my first pregnancy, even at the end. I still feel this discomfort and don't anticipate it going away soon. Baby B, depending on what angle his fluid was measured, was still just around 2cm, and he still had a visible bladder. Neither baby showed signs of strain of their hearts and neither showed anything that concerned the doctors about their current health. So, since immediate surgery wasn't necessary, the doctor decided not to do it at that time, but wanted me back the next day because of the concerning fact that Baby A was gaining fluid so rapidly.

 The next morning, Baby A had increased to 16 cm of fluid and Baby B still had not changed much. The decision was that since the babies' health wasn't currently failing, we should not take the risks of surgery until it was completely necessary. And, there is always the possibility to hold onto that it could reverse or at least stay the same. The excess fluid doesn't put a huge risk on the babies' health, but it can put pressure on my cervix and cause preterm labor. Fortunately, my cervix appears to be holding up well so far. We returned home, and the plan is to be seen every few days by my doctors here, being prepared to go back if certain things change.

Current belly picture- 24 weeks. I just love seeing pictures other people post at 24 weeks (. . . or full term) and comparing how much bigger I am. My belly is growing faster than even a normal twin pregnancy due to all the excess fluid. I asked my doctor to measure my uterus today and it was at 39cm, which would mean 39 weeks for a single baby! For twins, she said a normal size would be about 30cm.

With all the risks of this condition, if it becomes severe early in pregnancy, it is necessary to do some kind of intervention to save the babies. Later in pregnancy, the babies could be born before any harm starts to show, and no intervention is necessary. We are right in the middle, and have been right on the borderline of uncertainty whether intervention is necessary or not, so we have just been waiting. There is only one other option for treatment, and it has a 40-60% survival rate and a 25% brain damage rate. This laser surgery has a 90% survival rate for one twin, 70% for both, and less than 5% brain damage. We don't want to risk either unless it is absolutely necessary, but if it does become necessary, the laser surgery would be the better option. 

 The doctor we spoke with said that the laser surgery is only performed before 26 weeks. If the babies start to be in danger before then, that is what we would do. And he said that after that, our goal will just be keep them in until 28 weeks, when if their health is compromised, they would be delivered. I had known that premature birth was a possibility, but I was still a little shocked at the reality that our babies could have to be delivered in 4 weeks.

 So that leaves us back to just waiting to see what happens at each appointment. It has definitely been a stressful time and we always have the nagging thoughts in our minds of all the nightmarish possibilities. But, overall we are doing okay, and hopeful that everything will be fine. We love our babies and want them to be strong and healthy. We are thankful that our babies' bodies are still functioning properly now. We are thankful for the amazing technology that allows us to closely monitor what's going on in their bodies. We are thankful for support from family and friends and for all the fasting and prayers on our behalf.