I finally got called back to get weight and measurements and past medical history on myself. How many children I had previously and all their birth information. Again, I was fine. THEN the nurse asked...so why were you referred to us and seeing us today. Once I heard myself say that my son's heart may be too small on the left side I began to tear up and feel that nasty feeling welling up inside me again that I had been ignoring and pushing away. I went back out front afterwards to wait to go back with Shaun to have the in depth ultrasound done on little man's heart. Finally we get called back and my nerves are starting to get the best of me. My heart rate was almost 140 resting when I had it checked (good ole tachycardia of mine!)
We were put in a private ultrasound room and a very nice younger ultrasound tech came in and got us started. As soon as she started the ultrasound we saw little man's feet...WAY up by his head. I think you can see it still in this picture some from his scan. :) We got to see little man's very first profile picture (flat nose just like daddy!) and he was wiggling and waving his arms and even yawning and playing yet again. Again, he had a very strong heart beat because she pointed that out. He had 10 fingers and 10 toes. Everything was right on target growth wise, and his little belly measured almost two weeks bigger, so she said he was "eating good"! Overall he looks "just right".
Once the specialist had a chance to look at everything he came in and looked at his heart some more himself to make sure he was seeing right then broke the news that our little boy indeed had HLHS. He said 20 years ago this was a death sentence when diagnosed (which I thought was a little much to say) but now technology and doctor's have come so far that there are way better chances for survival after birth. He said he could live inside me forever and be perfectly fine, but once he got here on his own and is heart had to function and process the oxygen rich blood to the rest of his body (my placenta is delivering the oxygen rich blood to him right now) that his only chances for survival would be a series of three open heart surgeries, or a heart transplant.So yeah the seriousness hit us like a ton of bricks and Shaun and I fought back tears the rest of the time he talked to us.
Towards the end he did look at me and say it was nothing that I've done or caused, so not to think it was my fault (which after we were referred I thought it was my fault, but hadn't said that to the specialist at all). He told us that we would have to go down to Emory in Atlanta to deliver (there or Grady) then he would have his surgery at Emory following very shortly after birth. After that he said chances would boost up to 70% for survival and then get better and better after each surgery. All three surgeries are done by 18 months of age. The first after birth, the second around 4-6 months of age and then the last around or before 18 months usually.
We had to be set up to start seeing the specialist regularly with my OB and then meeting with the coordinator to get us in down at Emory and meet with the surgical team, the prenatal cardiologist, and getting a "plan". We left a little shaken, and quiet frankly terrified. I have no idea what is to come and what will happen with our son. I am just entrusting God to be with us and our son every step of the way.