The Diagnosis:: August 25, 2009

On Tuesday morning Jeff and I went to have the target (4D) ultrasound of our baby girl.
Looks like we will for sure be getting a beautiful baby girl. This is what we normally call the "fun" ultrasound, you can see everything in such great detail. It was amazing to see her beautiful face and ten toes and fingers. I love the first picture. I think she looks like my beautiful sister. We were there for about 45 minutes and 3/4 of the time she was looking at the baby's heart. I knew something was wrong, but couldn't get the courage to ask. Finally, she stopped and said we needed to talk and asked if someone needed to take Mr. C out. She diagnosed our baby girl with a heart defect known as Pulmonary Stenosis. Which means that her pulmonary valve is too small. She said all four chambers had formed,but this one valve was too small. They scheduled us an appointment the next morning at Primary Children's. Though it was really hard to hear and accept what she had to say, we were able to stay calm and tried not to stress until we found out more information.

This morning, Wednesday, we visited Primary's to have a fetal echo. I laid there in awful silence for an hour and a half while they took nearly 200 pictures of her heart. When we were done we were taken to a "more comfortable room," the kind filled with a nice couch and chairs surrounded by tissue boxes. There we were met by a Pediatric Cardiologist and nurse. She asked what we had been told and the reason we had been sent there. We told her of the Pulmonary Stenosis diagnosis and she put her head down and said that it was actually worse that just that. Looking back we should have just accepted the first diagnosis and considered ourselves lucky. She actually has what is called Pulmonary Atresia. Her pulmonary valve is small as we were told, but the right ventricle is also very small and isn't receiving any blood. They don't know which came first. If the ventricle wasn't working properly which made it so the valve didn't work or if the valve was too narrow and wouldn't allow blood through causing the ventricle not to work. Fortunately, if there is a silver lining in these things, it's that it is her right ventricle that is too small. The right ventricle pumps blood to the lungs, where the left ventricle pumps blood to the rest of the body, controlling blood pressure and what not. This is nothing that I caused or could have prevented. It happened when I was about eight weeks along with her. She is OK as long as she is in me, she will stay there as long as we can keep her there. Close to the end of the pregnancy they will do some testing to see if she is developed enough to come and they will take me C-section around the same amount of time that I carried Mr. C. From now until delivery I will be seeing the cardiologist at Primary's, another doctor at McKay and continue to see Machel to monitor me and the pregnancy. I will be delivering at the University of Utah by a specialist there. Machel has such a calming spirit about her, that is why I love having her take care of me and my babies. She knows how to comfort. Unfortunately they won't allow her to be in the room when I deliver. They baby will immediately be taken and put on a drug that will keep her "duct" (the passage that connects the aorta and pulmonary artery) open. Usually when a baby is born and takes it's first breath this passage seals . The drug will keep this open until they do the first surgery. The drug causes babies to forget to breath so almost half of the babies are intubated. Once she is given the drug she will be transported by the Life Flight Team to Primary's. When she is three or four days old they will preform the first surgery. With having her C-section I will probably only get the chance to see her right before the surgery. The first surgery will be to insert a temporary shunt. Hopefully they can go through her side rather than opening up her chest. She will come home when she is about a month old. The second surgery will be when she is 4-6 months old. They will make an incision in her chest and replace the temporary shunt with a more permanent one. The third and hopefully final surgery will be when she is 2-3 years old. She will have another open heart surgery where they will "re-route things." What she has is only found in 1% of babies being born and the mortality rate is less that 5%. They only started looking seriously for this about three years ago. Right now, less that 50% of OBs look for it. The procedure is nearly 40 years old, so they are tracking patients from only 40 years ago, but have seen great results. Some are at the point that they are needing heart transplants and others are perfect. I can't imagine the way things have progressed over the last 40 years. Though this is very hard to swallow, I feel confident in what these doctors can do. We were told that she will battle with the effects of this her whole life. They told us most likely she won't be playing any varsity sports :( (I should have stuck with the piano anyways). I am grateful we discovered this before hand. Most parents take their babies home and end up in the emergency room. This way we will be able to be prepared.

I've never been one to ask for prayers in our behalf, I never have really had the reason to. Jeff and I have both lived such blessed lives. I know the power of prayer. I know it works! I absolutely believe in miracles. There is a chance that things can worsen, but there is a chance for improvement to an extent. We ask for your prayers in behalf of our little Baby Grace. We love you all and are grateful for the love and support that we always receive!