October 13, 2009: Perinatologist Visit - More Improvement

Yesterday we had our appointment with the perinatologist. It appears as though we have a baby that just isn't interested in a life time of being sick. We will take it! I feel very very blessed and very overwhelmed by how blessed I feel. Yesterday I took my mom with me to my appointment. I thought she might enjoy seeing our little Grace in action. These appointments are fun because they look at everything and the sonagrapher is so sweet and usually takes a minute to look at her face in 4D. Below I added some pictures, they aren't that great because the cord is across her face. Even though you can't see the cord it is causing her face to be a little distorted. I love having appointments so often and seeing her so much, but each time I leave I become extremely emotional. This time is no different. The sonographer at the office we go to is GREAT! She is so sweet. Before we started my mom joked with her a bit and told her we would appreciate it if she could just tell us that everything had changed and nothing was wrong. She laughed and told us she has had a sick daughter too (kidney transplant at 4 years old) and hoped for the same each time, but it wasn't likely. I guess it doesn't hurt to ask! As she searched around her heart she told us that there was indeed a pulmonary valve, the artery was bigger and that there was blood in the artery. We already knew this from our last visit to Primary's, but it was nice to have a second person confirm it. She also said that the fluid that she discovered 4 weeks ago was NO longer there! Last time we went to Primary's they discovered an irregular heart beat. Yesterday her heart was beating PERFECTLY! We couldn't have asked for anymore. After she left the doctor came in. I hadn't met with this doctor before, but really liked him. He actually spoke in terms we could understand. He looked at the pictures and said, "so has her diagnosis been changed?" I didn't quite understand what he meant and questioned him. She was originally diagnosed with Pulmonary Stenosis (narrowing of the Pulmonary Artery), when we went to Primary Children's they told us she actually had Pulmonary Artesia (narrowing of the artery, no valve and a small ventricle). He said she HAS a valve! When we left our last appointment at Primary's that is what I felt they were saying, but the doctor never really came out and said it. We will wait until our next appt. at Primary's (Oct. 28) to confirm it, but I feel like that is what is happening. At this point I am trying not to feel TOO optimistic as things change each appointment. There is a big difference between the two defects. I have felt overwhelmed by this news, but also very overwhelmed by what the doctors are suggesting I do. We are going to deliver at the University of Utah no matter what, (she is sick and needs immediate attention, it is just a matter of what they need to do to her) but I have had TWO separate doctors, on TWO separate occasions suggest that I do a VBAC (those of us who have had c-sections know what this means :), Vaginal Birth After Cesarean). I am SO against doing this! I have begged a friend who wanted to do it not to. I have since learned that it is not the amount of time you are in labor it is the time that you spend pushing that matters. I was at the hospital with Mr. C for over 15 hours, but pushed for around 20 minutes before he began to stress. The reason the took me c-section was because of him stressing. I wasn't given that long to push. These doctors believe that I would be just fine having a VBAC and think that it would be better for my body to do it this way. My mom joked with me that they were pretty much begging me to do it. It won't affect Gracelyn at all! Nothing is going to change for her until she comes out and takes that first breath. I won't stress her by doing it this way. I will admit that I am considering it. We are scheduling a date for the 15th of December. The doctor is going to schedule it as a c-section. He says it is easier to schedule a c-section and change it to an induction than to schedule an induction and change to a c-section. Waiting until the 15th will put me past the amount of time that I went early with Mr. C. I prefer that if I do the VBAC that I go into labor on my own instead of being induced. Having her VBAC would be a lot easier on me and would allow me to be able to see her and take care of her a lot sooner. She is going to be a tiny baby, yesterday they told us they expect her to be 6 pounds. We have a lot to think about.

Again, I want to thank everyone for their continued prayers and support. We love you all!

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.