Earlier this week, I had my mind made up that Anya wouldn't make it. I talked about burial plans, and even layed there awake at night thinking about what I would dress her in when I had to say goodbye. I thought about her little hands and feet and how I needed to do hand prints and foot prints so I would never forget how tiny she was. Now I know I needed to have those plans in place so that I wouldn't have to think about it after the fact, if that ever were to happen...
Now I am in a much better place. Tuesday morning I got a call from the Perinatal Center that the preliminary amniocentesis results were good!! No extra chromosomal material, she has 46 chromosomes and is definitely a girl by DNA :) Yesterday morning I got a call that the micro-array test results were back, and all looked good: there are no mutations or abnormalities within her 46 perfect chromosomes! This means that her Hypoplastic Left Heart is simply a rare anomaly... that happens in 1 out of 100,000 babies, and makes up only 7-9% of all congenital heart defects.
Wednesday is about when I started feeling hopeful again. That morning I had an appointment at the Pediatric Cardiology dept at UMMS. They did another 1.5 hour fetal echocardiogram, and I got to meet one of the 7 cardiologists on the cardiology team at UMMS. She was straight forward with the facts and didn't sugar coat anything, but somehow she gave me hope that Anya can eventually have a normal life. She is just going to have a rough start. Once she comes home, typically 3-4 weeks (sparing any complications) after the Norwood procedure (1st, and most complex surgery), she will likely be on a feeding tube and I will have to monitor her weight, stats, and pulse ox daily. She is going to come home with a lot of equipment! Right now, I see the Pediatric Cardiology doctors once a month until I give birth, and then after Anya eventually comes home from the hospital they will need to see her once a week at least until her second surgery.
After meeting one of the pediatric cardiologists, the pediatric cardiac surgeon (who specializes in HLHS surgeries) was free to meet with me.. so we walked over to his office. I was happy to meet him. He showed us a 3D model of the heart and explained the surgeries to us again. He talked about his success rate, and how the national average is 75% successful, his for the Norwood procedure is 85-95%. He also mentioned there is a 10% mortality rate interstage, between the 1st and 2nd procedure. He said this number is decreasing however, with diligent home monitoring, home care nursing, and keeping up with frequent cardiology appts so that IF something goes wrong, they will know right away. For the 2nd and 3rd surgeries, he said he has never lost a baby during those surgeries. This made me feel a lot better :) I can picture us going through this now, and while it will be hard, I can do it! I asked about how he feels his success rate will vary with smaller babies, and he said he prefers babies to be over 5lbs (which is what I'm hoping for!), but if not he can do a "hybrid" procedure, where the first major open heart surgery is post-poned until the baby is a little bigger, and is kept on medications to keep the fetal shunts open for blood flow.
I had my cervix check this morning (which is why I delayed updating the blog until now), and bed rest seems to be working!!!! Two of the measurements I saw this morning said cervix length is about 2.4cm, which is stable, if not *slightly* longer than last time!!! While the tech was doing a quick heart scan before doing the cervix check, my mom asked me if we were going to go to Precious Previews (3D-4D imaging place) with this pregnancy, and I said no.. I get ultrasounds every week and I don't want to pay for 3D images... so when the tech was done scanning, she switched over to 3D and printed to facial shots for me <3 She had her hands in her face the whole time (like the one above, you can see her thumb and all her fingers!!), but then moved her hand for two seconds and we got the first one I posted, and you can see her facial features :) Her nose is a bit different than Emoree's!! (I'll have to find Emoree's 3D scans from around the same gestational age and do a comparison pic...)
So obviously I'm a lot happier now that we have a plan and know what is going on :) The inital shock has worn off. Over the weekend Emoree's Poppy painted the room where the potential nursery will be... and though I am excited about it, I'm not setting it up as a nursery until after I know Anya is coming home. For now, we are going to put Emoree's books and her bean bag chair in there, and it can be her "library".
My next appointments coming up are first on Monday, I see my old OB and do the glucose test (yuck), it is the first time I will be seeing him since the diagnosis and he wants to talk to me about it. After that is a fetal cardiology appt and cervix check on Wednesday.
I haven't weighed myself lately, my scale is downstairs and since I'm on bed rest, I'm not supposed to do steps!! My mom has been getting me McDonald's breakfast every morning before she goes to work (so that she makes sure that I'm eating, so she says), so I am sure I've gained weight this week for the first time in 20 weeks! I have "cheated" on my bed rest parameters... I pick up Emoree from daycare about 3 days a week and bring her home... but it's not like I'm up walking around the mall or anything!! That is the ONLY driving I do, my mom takes me anywhere else!
Update: I created a comparison pic!!! In these pics Emoree & Anya are 6 days apart gestationally, and look so different!!!! I assure you they ARE from the same donor and are full siblings!!