Thursday, October 2, 2014

Update 24 weeks

I'm 24 weeks today. Sorry about the lack of updates, but it's been a hard few months. Everything looked great until our 18 week appointment. We then found out my cervix was funneling and shortening. My cervix was at 1.8 cm when it should be at 4 cm. even worse, we found out baby B was very sick. He has hydrops. Hydrops is when fluid accumulates through out the body for various reasons. It's more of a symptom than a diagnosis. They checked all of the usual suspects, but it remains unknown why baby B is accumulating fluid. Specifically, the fluid is accumulating around his left lung and abdomen. Because of this his left lung has been unable to grow and the massive amount of fluid has pushed his heart from the left to the center of his chest. This has also put pressure on his right lung compromising it's growth. The primary susoects are a chylothorax (a leak in the lymph system) or an inherent genetic metabolic disorder whcih would almost certainly be incompatible with life. Everyone recommended terminating B to give A a better chance and since they felt B wasn't going to make it anyways. We decided against that for a number of reasons. One main one was that terminating B can cause the loss of the whole pregnancy 10-15% of the time. We just couldn't take that risk with A's life. i ...... ................................................................................................................................................................................................................ But, back to the cervix.... We decided to do a cerclage. The doc was able to put in 2 stitches one above the other. We also started progesterone shots. I started these on my own. I had read plenty of studies and there seemed to be a low risk, high reward factor. In the upcoming weeks my cervix continued shortening. It is now just above the cerclage, but the stitch is holding and it has been stable since about 20 weeks. ................................................................................................................................................................................................................ So, we've gone back on a regular basis and each time we check, everything looks essentially the same. Cervix is poor, but stable. B is alive and the fluid remains about the same. A looks great overall. They both continue to grow on track and A is about 4 days ahead on growth and B is about a day ahead on growth. My current hospital, Hinsdale, really doesn't have the skills, equipment or will to help us fight for B. University of Chicago appears to have more fight in them, but Cincinnati Children's Hospital has the skills to help B. They're the only place in the region that can do fetal surgery to possibly put in a shunt in B's chest to drain the fluid and give his lungs a chance to grow before birth. I don't know if they'll do it. We always have to consider the risk to A and fetal surgery certainly posses a risk to the entire pregnancy. We think there will be a good time to try it. But, of course, the pressure on B's heart from the fluid on his lungs could cause it to stop at anytime. So, there is a lot of wait and see. .................................................................................................................................................................................................................... But, for now we're 24 weeks and we've reached the age of viability. We're not having any contractions. I've been on bedrest since 18 weeks and that seems to be keeping everything calm. But, obviously, 24 weeks is not optimal for birth. And, if born now, B will certainly not survive. And, A will have a very long road with no certainty of survival. Everybody needs to stay inside for as long as possible. And, so we wait...