Please excuse me if this post is a little incoherent but it is late and I am pretty tired. However I wanted to get a post out about our recent doctor visits to give everyone accurate and up to date information on the status of the trips and to prevent the rumor mill from spiraling out of control (thus the title of this post).
Some of you may have heard that during our 2 hour long marathon morphology ultrasound last week, the ultrasound technician and the doctor thought that they may have observed a congenital heart defect (CHD) in one of the babies and ordered an echo cardiogram (ECD) of the babies hearts to confirm or refute their suspicions. The ECD was originally scheduled for later next month but we got a call yesterday that they could see us today if we were available. Long story short, we went in for the ECD today and they confirmed that our baby girl has a CHD called AV Canal (layman's terms). Basically she has a hole in her heart where the valves between the chambers have not fully formed, thereby allowing blood to circulate through the chambers in all directions.
The good news is that as far as CHD's go, AV Canal is the most straightforward to fix via surgery sometime during the first 3-12 months of life. The surgery involves putting patches over the "canals" to solidify the chambers of the heart so that they function properly. The success rate is extremely high and most recipients of the surgery go on to lead normal health lives. Basically the surgery is routine so far as any open heart surgery on an infant can be considered "routine". In our case some of the other complications that can arise out of AV Canal were not observed meaning that a few other major issues have been avoided.
The tricky part of AV Canal is that it is a strong indicator for Downs Syndrome (DS). From what the doctors told us and from what I have found online we have about a 50/50 chance that our baby girl will have some form of DS. The good news from our visit today was that all of the other "markers" for DS came back negative meaning that right now the AV Canal issue is the only marker. The only way to be absolutely sure one way or another is an amnio which we have decided against since a positive diagnosis of DS would not change anything for us and there is also a chance with amnio to cause preterm labor/miscarriage, etc.. Since we have beaten the odds of less than a 1% percent chance for triplets and a 2 in 10,000 chance of an AV Canal issue, we are not taking our chances with anything that has a chance above 0.00% of harming our babies. This means that ultimately we won't know until the babies are born whether or not our baby girl has DS.
Julie and I are very much at peace with everything right now and so please do not feel the need to reassure us that everything will be all right. We understand that everything is in God's hands and we have truly given this whole situation over to him. We obviously covet your prayers and one of the main reasons for our decision to be so open about all of this is to encourage you all to pray for the babies and for our continued peace of mind about all of this. Right now Julie is starting to really feel the effects of this triplet pregnancy and so all of our energy is focused on helping her through the next couple months. The babies will continue to grow and there is really nothing we can do at this point for them that will change anything other than keeping in the "oven" for as long as possible. Thank you all again for your continued thoughts and prayers.
Well, now on top of being part of the larger parent community online, AND the parents of multiples online you can also consider getting into the parents of heart babies scene, which is very jumping. My good friend Jenn from NC had a little girl with HLH and benefited a lot from the support of strangers all over the world.
ReplyDeleteI will be praying for you guys. When I feel cranky or uncomfortable with my own pregnancy I often think of Julie and say a little prayer that she's coping with the triplets OK!