Cardiologist appt. Sept. 30, 2009 - Doctors are "hopeful"

I have hesitated in posting anything since our last appointment, simply because I am not sure what to feel or where we stand. On September 30 we had our 4 week appt. with the cardiologist at Primary's. This visit was better than the last. We had done our studying, we went prepared and understood more the functions and parts of the heart. This time they only took around 70 pictures of her heart. Our sonagrapher actually spoke this time, so it wasn't that awful silence we sat through last time. Once we were done we, again, went back to the "more comfortable" room. Dr. Pinto (Pinto Bean as Jeff calls her when I am upset and he is trying to make me laugh. She is a tiny, cute, dark little thing, so it fits her.) gave us both some good and bad news. I always like to start with the bad so that there is something to look forward to. I have attached a picture of the heart below to help me explain better. Her problems are associate with the right side of the heart, what you see in blue.

So for the bad news:
Apparently there is a lot of pressure in the right ventricle. Not good! The pressure will cause "cracks," (I believe she called them fistulas) in the walls of the heart. This obviously would cause the heart to be weak and require her to have a transplant "very early on." I didn't ask what very early on meant. I don't know that I was interested in knowing. However, she can't necessarily see those cracks through the fetal echo. She needs to wait for the baby to be delivered to do an actual echo on her. She also still has fluid around the right side, but it is a small amount and is staying consistently small.

The GOOD news:
We learned lots of good things! The biggest being that her pulmonary artery has actually grown!! There is blood in it, the blood is going the wrong way, but it is there! The space that the PA should fill exists as well. She was also able to see that the pulmonary valve IS there! This is HUGE! Unlike four weeks ago, the option is possibly there to go in a do angioplasty. They could possibly go in and insert a balloon that they would inflate to increase the size of that artery. This would be a miracle and would change EVERYTHING for her for the rest of her life. The doctor told us that she is HOPEFUL!

More good news:
-We also learned that the defect she has isn't necessarily associated with the defects that are found in Downs babies.
-I have explained in the past what she has is a "fluke" thing. However, since she has it, it now becomes hereditary for our future children. We did learn this time that the defect isn't as likely to be past on when you are dealing with the right side of the heart instead of the left. Yeah!
-We were able to meet with the nurses where I will be delivering. They told me that they will take her from me immediately, but one way or another, I WILL see her before they take her over to Primary's. That made me REALLY happy. I thought it would be a couple of days.

Basically what we were told is that we aren't really going to know what is going to need to happen until she is delivered. We were given about six different options, but there could be 20. We are anywhere from a short visit with angioplasty to a transplant. Pretty broad, I know. Overall it was a good visit. We were able to laugh with the doctor and each other. After we met with the doctor we were given a tour of the University hospital mother and children's floor where I will be delivering. It looked really nice. We also met the nurses on that floor. Then we were taken over the bridge that connects the University hospital and Primary's. We were able to go to the PICU where she will spent the first weeks of her life. The room she will first go into is a small 10'x12' room with a glass door. She will be assigned ONE nurse, who will stay with her always. They told us it is a little overwhelming in there as she will have about ten machines surrounding here. Later she will be moved to a room with another baby and again ONE nurse for just the two of them. The area she will be in is being finished right now and should be done before she comes. It will be nice to have new clean area since we will be spending A LOT of time there.

Jeff and I are VERY thankful for the support that we have been given this far. We want to thank you all for the emails, cards and gifts. We especially want to thank those that are continuously putting our names in the temple and for all that are offering prayers on our behalf. I know that the improvement that has taken place is because of YOUR faith. I have been told by loved ones, by ward members and by strangers that they have overwhelming feelings that all is going to be okay for Gracelyn. I have felt so comforted since our last appointment. As naive, overly optimistic and stupid as I feel saying it (because you are supposed to "hope for the best and expect the worst, right?) I really believe and feel in my heart that all will be okay. Maybe I'm just being blessed with the comfort of peace or maybe it is real, but for now I have great hope and feelings that she will be okay. Understanding that okay may be an early return to her Heavenly Father. We love you all VERY much! We will give another update after our appointment on October 13.