Hello and Good-bye Cincinnati

After another whirlwind trip here and numerous tests once again, we've decided to do nothing and let nature take its course. Baby B looks like she may be stable enough to survive the pregnancy, with some heart issues that can be corrected surgically once she's born if needed. The reason for doing nothing is basically the better of two evils. We are certainly not out of the woods, but the procedure on the placenta could actually turn out to harm both babies and could harm me because of the additional complications. I will update this when we get home and after I get some sleep. We head out first thing in the morning.

Going back to Cincinnati

So we "made it" to the 20 week mark, where the specialist at the Fetal Care Center in Cincinnati feel that this time frame offers the best scenario for approach to the uterus and placenta. Everything is set to go, and we leave tomorrow. I hope to have the same access to my computer as last time to update along the way. Monday will be another full day of more evaluations, starting with an ultrasound first thing in the morning. We end the day with another consultation with the surgeon and then we'll have all the plans in place for whatever procedure is decided.

Some odds and ends, while I'm getting things organized for the trip...

Sophia is starting to cooperate for the camera again. It's been a frustrating past 6 months with her flat out refusing to have anything to do with either posing for the camera, or pretending that it's not out. And if she just has to pose, she puts on the fakest smile that it's not even worth the effort. But maybe things are changing, as proof here:

While preparing for things to come, I've gotten very focused on some projects that have been looming over my head. One in specific has been haunting me every time I walk into Sophia's closet to get her dressed. She has a billion clothes, thanks to Heidi and Erin who have given us so many adorable clothes from their daughters. I've accumulated those in addition to the ones I supplemented from newborn to 3T. Sophia is currently in 4T, and I've run out of closet space to make room for anything else. I had 14 large storage bins full of past clothes to sort. I needed to throw away the stained ones and put aside the well worn ones for donation. My mom came over this past week to help and we ended up with 4 large construction Hefty bags full to donate. Here's the start of our daunting task:
Too bad I didn't take an "after" picture, but I think you get the idea.

And last but not least, I know I was very religious about getting bi-weekly belly shots with my pregnancy journal of Sophia. But this pregnancy has been such a roller coaster I had moments that I thought maybe I didn't want to look back on this. However, it's not fair to these babies that I'm neglecting them their own journal along the way, so here's the 19 week belly shot.

Pictures of the twins and baby B's cystic hygroma and hydrops

I've been having weekly follow up ultrasounds since we got back from Cincinnati Children's Hospital. Mainly, we're tracking baby B and how her cystic hygroma and hydrop fluid levels are. It's a tricky thing to measure, given that babies move and they aren't always on an equal plane. So we've discussed how to get the most accurate standardized measurements and I think this week is the first time that each of the medical teams can get a comparison reading from the images.

From what my Perinatologist has noted, the fluid levels have pretty much stabilized in baby B. Of course I'm hoping for the levels to go down and start to resolve completely, but at least they don't seem to continue to significantly increase.

I know it's hard for someone that isn't trained to read ultrasound images to see where baby B is impacted, so I added arrows to the area where the fluid is abnormal. If you compare to baby A, which is the next picture, you can clearly see that baby B looks puffy and swollen. This is due to the skin edema as well. The arrows below her body show where the cystic hygroma is located. It almost looks like she's resting on a pillow. The arrows inside her stomach area is where the most obvious hydrops are. The shorter arrows are the skin edema.

Baby A (below) continues to bully her sister inside the womb. Good thing there is a membrane separating these two, or I'd fear for baby B even more. Baby A is very active and likes to punch and kick her sister, push her into the corner and lay right next to her. I've been telling her to take it easy in there, for her sister's sake.

I have two more ultrasounds for the next 2 weeks to continue to monitor things. Both babies are still growing on track developmentally, and both have normal amounts of amniotic fluid. While baby B has a slightly higher heart rate than baby A, both are within normal range. So it looks like, for now, we are on target to go back to Cincinnati at the beginning of September to have the vascular structure of the placenta worked on, so that both these babies will be able to operate independently of each other.

Results and a small sense of hope

Another busy day here. The amniocentesis results came in and are conclusive for Turners Syndrome for baby B. While there are varying degrees of Turners Syndrome, the most common is short stature (typically not past 5 feet in height at full maturity), which can be helped with growth hormones during childhood. There is a chance that she will be infertile as well. There are no mental or physical disabilities associated with this chromosomal defect. While about 98% of Turners Syndrome babies die within the first trimester, once they make it past that developmental stage then it's very likely they will make it to full term pregnancy and live normal lives. I'm now well into the second trimester so that's also a positive going in our direction. It's incredibly rare to have identical twins with one Turners, so there are really no statistics of how it pertains to our specific situation. "Normal" twins are still a high risk pregnancy, so the doctors don't know if this makes it more or less risky.

All signs have pointed to Turners during the ultrasound and even the echo of the heart. Baby B's femur measures shorter than average, her left ventricle of the heart is slightly smaller. There are no anatomical defects present in the heart or in any other part of the body structure, as the MRI concluded. These are all good things, because it points more towards the possibility that this cystic hygroma and the fluid around the heart and kidneys might start to resolve. As of the ultrasound findings today, the fluid levels have stayed the same since Monday.

It's still tricky and there still is no obvious course of action. All the risks are about the same, it's just trying to figure out the best bet to ensuring that both babies have equal chance of survival. There are a lot of factors and a lot of unknowns still, but we are more hopeful of today's findings.
We are coming home tomorrow morning. I'll have weekly ultrasounds to continue to monitor the fluid levels in baby B. What we do know is that the immediate future looks good for both babies. Into the next few weeks, we'll be able to see how the fluid levels are progressing or not and then see if we need another type of procedure that separates the veins both babies are sharing in the placenta. This would give more insurance that the babies have their own environment to develop, and make them independent of each other. The procedure has it's own risks, and typically is not performed before 18 weeks, so we aren't there yet. As of today, I'm hopeful for both of these babies, and continue to put all my energy into willing these babies to survive.

Cincinnati Children's Hospital

We are here. Here we are. Rick and I got here on Sun. afternoon after a pretty long day of traveling. No quick way to get to these parts via airplane, but all in all the trip went as scheduled and we got settled in.

Mon. we went to the Cincinnati Children's Hospital, where I was scheduled for a physical with the nurse, a very detailed ultrasound, and a consultation with the panel of doctors and nurses that would be involved with the procedure. At the end of the discussion, we found that it really was a very complicated decision. The doctor that would perform the procedure felt more comfortable waiting a few days for me to at least be 16 weeks along. There was also the question of risk, where the one unsuccessful procedure they have had out of the 63 they have done was at 16 weeks pregnant. So by giving it a few more days, perhaps the complete panel of results from the amniocentesis would give some conclusive information, as well as having certain structures available from an approach perspective in the surgery process. We left more confused about our decision, but more informed about the risks. We had rescheduled the procedure for Thurs.

Today I got a call from the doctor that would perform the procedure. He said they've had meetings with a number of experts and that another Dr. wanted to do an ultrasound to see for himself. This Dr. is one of the directors of the department, and he felt there may be some more time, if not more options for us. We saw him today, and he believes that baby B may have a chance of survival at least for a few weeks, and maybe until birth or beyond. However, there are still a lot of factors that need to be determined, which means more testing. I have an MRI scheduled for the babies tomorrow, followed by an echo of the babies hearts. Fri. I will have another ultrasound to determine if the cystic hygroma and hydrops has increased. The ultrasound today did not show increase in either, so that's a good sign but not enough to sway the Dr. in one decision or another. The procedure was again put off until we get more results.

Tomorrow should be a long day, but possibly one that can provide some clarity. I am putting all my energy into the hope that both of these babies have the best possible chance at life. Thank you for all your hopes and prayers during this. I'll try to update this tomorrow or Fri. when I have more information.