Cardiology Update

Anna Grace had a scheduled cardiology appointment this morning. Thank you all for praying for her... and for me.

Anna Grace didn't really want to cooperate during her echo today. It is impossible to reason with an 11 month old and despite my best efforts to distract and entertain her she insisted on crying pretty violently during the whole thing. She just has so much anxiety around doctors. I can certainly understand it and it is heartbreaking to know she is so scared and there is not really anything I can do to help her or soothe her. Sigh.... Once the echo was done she calmed right down again and started playing with the bag of toys I brought. She also did the same thing when the nurse tried to check her O2 sats.... cry... cry, cry AND during her weight check.... cry, cry, cry AND during her blood pressure check.... cry, cry, cry. The doctor WANTED to get a blood pressure in the right arm and right leg. We were only successful in obtaining a blood presure from her right leg and as you can imagine it was through the roof with all her screaming and turning blue. Sigh.... My little girl does NOT like the doctor! I don't think we have ever been able to get an accurate blood pressure reading on Anna Grace - which is really kind of scary because we don't really know what it is.

Anyway... after the doctor reviewed the results of the echo he determined that things looked the same as they did last time. Which in my opinion is a good thing. She still has the slight mitral valve leak so he is continuing the keep her on Lasix because of that. He is hoping that she will cooperate a little better during her next echo so he can get a really good look, if not then we'll have to talk about a sedated echo. I really, really don't want to have to do that if we can avoid it.

At the end of our appointment I was asking about her Patent Foreman Ovale which the doctor said that he would not call it that - he said that hole is bigger than what would be determined Patent Foreman Ovale and that he would call it an Atrial Septal Defect. As a heart mom, I am learning it is important to ALWAYS ask questions about your heart baby's diagnosis. Things can change and if you don't ask then your doctor might assume that you know. So.... I was thinking that hole in her atrium was Patent Foreman Ovale, but it is an Atrial Septal Defect instead. Whew... it is a lot to keep up with.

I also want to stop a minute here and say that I really, really, really like Anna Grace's cardiologist. Despite all the crying and screaming he is always playful and understanding with her. Even though it is sometimes difficult to have a conversation with the doctor with Anna Grace crying he never tries to rush through (as tempting as I'm sure it might be). As a matter of fact, it is usually me trying to rush through to just get her out the door to calm her down (which explains my Pantent Foreman Ovale / Atrial Septal Defect confusion)! He also is a doctor that eers on the side of caution which I really like about him. Doctors.... just like regular people have different personalities and working styles and Dr. R is just right for us and I am thankful for him.

We also briefly discussed her next surgery, the Fontan. That surgery will occur - ideally - when she is 33 pounds. Anna Grace weighed 21 pounds at today's appointment so maybe another year or 18 months before that next surgery I would think.

I also shared with him about the Heart Mom's Night Out I was planning and he was really excited about that and even had a few people that he knew that might be interested in attending that I didn't know of. I told him that I would get him a flyer of info about it that he could share with anyone he thought would like to come.

So, all in all - other than Anna Grace being so upset during the entire morning - I thought the appointment went well. We don't go back again unil March. That's 3 months from now. That is the longest we have ever been between cardiology visits and it is exciting and a little scary all at the same time. What a jounrey.....

Offical diagnosis: Hypolplastic Right Heart Syndrome: Tricuspid Atresia, Transposition of the Great Arteries, Aortic CoArctation, Artial Septal Defect, Ventricular Septal Defect, Pulmonary Stenosis.