Not much has changed throughout the last 4 weeks for Analiese (pronounced AH-nah-lee-sah), but we have a few things to update everyone on.
Analiese is now about 5 weeks behind in growth. I’m 28 weeks pregnant, and she is measuring around the size of a 23 weeks old. So that indicates she is still growing, but at about half the rate she should.
At my 26 week appointment, the Wednesday before Thanksgiving, Dr Sweeney showed concern that Analiese had entered into heart failure. He based his concern on indicators such as a thickened heart muscle, and a build up of fluid in the chest around the heart. He also noted that her blood pressure in the umbilical cord was still at a normal level, which is odd for heart failure indicators. I requested that we see a fetal cardiologist to verify the heart issues, and saw him on Wednesday December 2nd.
During the fetal echo, the cardiologist explained all the things he saw wrong with the heart. There’s a lot of technical, medical information that I don’t exactly understand, so I’m going to dumb it down for everyone. Basically the diagnosis of TOF was incorrect. Analiese has a severe congenital heart defect that shows in multiple areas. Her right ventricle is sealed off from the left ventricle, and one of the valves didn’t form. The other two valves switched places and her right aorta is about half the size of what it should be. The reason that her heart is still functioning at a normal level and pressure is because of the little hole in the top of the heart that everyone is born with. It is allowing blood to flow to her lungs and the rest of her body that isn’t receiving blood flow from the normal workforce of the heart.
All this means that from a cardiovascular standpoint, there is no reason for Analiese to spontaneously miscarry, and she should be able to survive labor and delivery. The trouble begins when she is separated from the hormones the placenta is providing to her that keeps the tiny hole open. Once she no longer receives those hormones the hole in her heart will begin to close, and at that point it will only be a matter of time before she passes. The cardiologist indicated that it normally takes a minimum of 6 hours.
I asked him if there was any surgical options for us, and he said no. The surgery to fix her heart problems is done in 3 parts, and each part is extremely dangerous for an otherwise perfectly healthy baby. He said that with the genetic factors that Analiese has, that she would not be a candidate for the surgery.
It has been a hard week for me and for Stefan. On one hand, we are so thankful that it seems as though we are guaranteed to meet our baby girl, but knowing that she will only be with us for a short amount of time is devastating. We are spending the time we have with her right now, and trying to focus on the joy we feel when she moves around and kicks.
Thank you so much for the love and support that has poured out on us in the last 4 weeks. We appreciate the fact that you all have respected our need for privacy to deal with this and try to prepare ourselves as much as possible. We don’t know exactly what the next 12 weeks hold, but as we receive more information we will update you all.