I knew something was wrong as soon as my perinatalogist followed the ultrasound tech back into the room. She told me Anya has a serious congenital heart defect called 'Hypoplastic Left Heart Syndrome', and it is the worst case of it she has ever seen. The ultrasound tech did spend an extra long amount of time looking at the heart, but I didn't think anything of it because I was so excited to finally find out the gender. The easiest way to explain it is the left side of her heart is underdeveloped and they clearly showed me afterward on the ultrasound screen where there is no blood flow on the left side of her heart. Paired with the high risk of prematurity and the extent of her heart defect, this comes with a high mortality rate. She will probably be okay through now and when I deliver; the critical time comes from birth through her first surgery that will most likely occur at 2-4 days old to put a shunt in her heart and widen the aorta opening. If she makes it, she will have at least two more reconstructive cardiac surgeries, at approx 4-6 months old and again at 1.5-4 years old to re-route the flow of deoxygenated blood.
I am an emotional wreck. I barely slept at all last night, and waves of emotion come and go. Why did this happen? Everyone assures me it is nothing I did to cause this, but they really don't know WHAT caused it. From the beginning I have had that small feeling in the back of my mind that something wasn't right that I didn't tell anyone... turns out, I was right. I just woke up from a nap and feeling a tiny bit better, so I felt like it was the right time to type this and announce it to the world...
This morning we were back at the hospital and I had my blood drawn, genetic counseling, and an amniocentisis. I do not wish an amnio on anyone! It was extremely painful. Using an ultrasound as a guide, the stuck a long needle through my belly into my uterus to extract amniotic fluid to do a chromosone study. Since I have an extra small size uterus, they had difficulty getting the needle in the right place to safely draw fluid, so for what felt like minutes they wiggled the needle around in my skin to find the right place. Maybe it wouldn't be *as* painful for someone with a normal uterus and an appropriate amount of amniotic fluid, but for me it was torture. The results take 2-3 weeks to come back.
I also had them check my cervix length today, since we skipped that yesterday after hearing the news... my cervix has shortened slightly to 2.5-2.7cm, no precautions there but I go back in 2 weeks for another scan.
The next step is to see the fetal cardiologist. My appointment is next Thursday, April 26th @ 12:30pm at the Center for Advanced Fetal Care. I am not sure whether this appointment is just a consult, or if they will be doing a fetal echocardiogram the same day. This also changes the hospital at which I will be delivering, I was going to be at GBMC (where I had Emoree) but now I will be delivering at University of MD hospital because this is where Anya's heart surgery will be done as well. This also changes my OB, I am still seeing my current OB for now until they "officially" transfer my care, so I do not know who will be delivering my baby yet. I will also be seeing them every 2 weeks or so until birth, which means more doctors appts :-/
This is how I originally planned on announcing gender, and I decided I still needed to post it since I worked hard on the template last week <3
19 Weeks: 190.2lbs (+ 0.6 lbs)