Our appointment in Seattle on January 8th: We learned that our baby was healthy, developing on track, all except the heart. I was 26 weeks pregnant and we had not found out at this point what we were having but had decided that if our baby had a heart defect, we would want to know what the sex was. (Bryan and I enjoy the surprise after 40 long weeks!) We got a very clear view of HER and were simply in awe that we were expecting a baby girl. This was one of our highlights of this appointment as well as a couple of smiles from her...she's very beautiful! After meeting with our new team of doctors and sitting through an ultrasound and fetal echocardiogram, the news that our baby had a CHD (Congenital Heart Disease) was imminent. Our Cardiologist, Dr. Meg Vernon, sat down with us and completely drew out a normal heart and then our baby girl's heart. We learned a lot of new terms and got an overview of how complex our hearts are...we take so much for granted when ours develops normally and functions without any problems. Her diagnosis was Hypoplastic Right Heart Syndrome and Pulmonary Atresia. We spent over 2 hours with the doctors discussing the nature of our baby's CHD. We developed a "plan" for delivery, being induced between 38-40 weeks in Seattle at the U of W with a transfer of our baby girl to Children's Hospital following delivery. The doctors have prepared us for about a month's stay after her birth and because of her complex heart disease, she will require surgery within the first few days of life. We do have options but won't know until she's here- I'm due April 14th, so sometime in the beginning of April this will all happen, I assume. For now, my pregnancy is treated normally and she is doing wonderful...as long as she's in utero! My placenta does the work for her heart that she can't do on her own (get the blood to the lungs for oxygenation), but as soon as she's born, she will be monitored very closely and they'll begin the process of fixing her heart. We've learned that CHD is the most common birth defect, 1 in 100 babies (about 1%), there are many degrees of CHD, and this may or may not be passed down genetically. We have no history of CHD in our families and our doctors will run tests after she's born to determine whether this was genetic or not. We've also learned that the surgeries she may have, Children's performs about 1x a month and this method has been around for 20-30 years. In fact, our Perinatologist, Dr. Cheng, told us she has a patient who's expecting her first baby, in her mid-20's and was a Hypoplastic Heart baby herself. We learned that once our baby girl has the surgeries she needs, she should be like any other child. She'll just see a Cardiologist the rest of her life and take medication. The doctors gave us a lot of hope in their findings and they feel very positive about what we can do about our baby's heart condition. The rest of her heart is intact and functions normally, it's just the right ventricle and pulmonary valve at this time that is not.
Bryan and I are doing really good for the circumstances, we have faith that everything will be ok and confidence in our baby girl that she'll be a fighter through all of this. We know that God is with us and will be there every step of the way. We are so blessed with our family and friends and have all of the support we need to get through this. We're just staying optimistic and hoping and praying for the best outcome for her. I have already become so attached to this baby because of knowing of her condition and feeling incredibly grateful for her. This is our baby and I wouldn't trade this for anything. God has given us a special child to love and take care of that will help us grow and refine us to who He wants us to be. We pray every night for her and as Jace says it, "pease fix our baby grils heart, Amen." Comfort sustains us right now, knowing that Heaven is being stormed with prayers for our little one from all of our family and friends.
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