January 21, 2016; 21 weeks

Rose,

We went back to NW Perinatal on January 21, 2016 to meet with Dr. Peter Chang, your cardiologist. I had been looking forward to this appointment and hoping for more answers. I had a lot more anxiety about this appointment than I did the appointment previous. The appointment went about the same as the last one. Dr. Chang did have a little more information for us and drew us a picture of what your little heart looks like right now. There were 4 main things that he gave us names of for what he thought was wrong:

1.       Atrio Ventricular Cushion Defect

2.       Ventricular Septal Defects

3.       Interruption of Inferior Vena Cava

4.       Heterotaxy (though he couldn’t tell yet if it’s Polysplemia or Asplemia

He also let us know that he wasn’t able to see the veins that connect the heart to the lungs. But that at this stage in your development, it isn’t uncommon to not be able to see them yet. He pointed out that your pulmonary valve looked a little bulbous, and that the walls of your heart look too thick in some places. He also gave us an informational book for congenital heart defects called “It’s my heart” put out by the Children’s Heart Foundation. He let us know that despite all the problems, you seem to be developing fine. That as your lungs continue to develop and they begin to use more blood things may become more difficult for you. But that only time would tell.

Dr. Chang said he wanted to continue to keep an eye on your heart as you progressed so that we could have a better idea of how best to help you as you continue to grow. As he left Dr. Tomlinson came in to answer any other questions we might have. I was curious if there was anything I needed to be doing differently to help you more. He said that my pregnancy, other than your heart, is very normal; that I should just continue to eat well, exercise, and take my vitamins. I also asked if your condition would change my options for how I would deliver. He responded that it was early to tell, but that at this stage, you were too small for an operation to likely be successful, and that your best hope was to let you get as big as possible so your chances of a successful operation would be higher. That likely I would be able to go into labor naturally so that you got as big as you could. I was happy to hear this.

I left the office that day with a lot of concern, but also I felt very hopeful for your well being. Dad, Grandma Fredrickson, and Grandma Giles were all with us that day. It was so helpful to have extra people there for support and to ask questions that I couldn’t come up with.