Friday, September 25, 2009

Visit to the Perinatologist- September 15, 2009

On the Sept.15 we had our first visit with Dr. Andres our Perinatologist. Since they hadn't seen the baby before, they took us in and did an indepth ultrasound as if no one had ever looked at the baby. We spent a good 45 minutes looking at every part of her. Apparently when something is discovered to be wrong with the fetus they first send them to a Perinatologist. They usually thoroughly look the fetus over and then send them to Primary Children's so that all problems can be looked at. For some reason we were sent straight there and skipped the Perinatologist step, I do remember our technician at the Women's Center telling us everything else look great about her and that she wanted a Cardiologist to see her right away. When they looked her over on Tuesday they said that everything else about her looked great! That was such good news, considering the way they started the appointment was, "These babies with heart defects typically have something else wrong along with their heart problem." All body parts measured to be growing at the same rate. She showed that I was due about a week later than we thought, but Mr. C was 6 lb. 13 oz. when he was born, so we don't expect she will be big. She didn't have a cleft pallet and her brain looked perfect. However, the first question the doctor asked when he met with us was, "How old are you?" He again told us that there is a good chance something could be wrong with her and wanted to know if we wanted to test her for downs. I didn't do this test with Mr. C and I had already decided I didn't want to do it this time. He wanted us to do it just so that we were "prepared." It wouldn't change ANYTHING for me. We know we have a sick baby and are already preparing ourselves. We do, however, have to accept the fact that when she is delivered we could find more that is wrong. I feel confident that she will be okay. The doctors at Primary's gave me the impression that they felt the same way. Dr. Andres spoke with us for another 45 minutes. I don't know if we appeared to be too okay and confident, but he stressed to us that though we have accepted the news of her being sick now, feelings and emotions will come back 10 fold when she is born and we see her with tubes coming out from everywhere. We have actually talked about this and have realized that we are getting prepared in every way we can now, but know it will be very difficult when we actually have to see her with the incision in her chest, feeding tubes and IVs. I don't know if you can prepare for that. Overall it was a good appointment, I really liked Doctor Andres. We will go back and see him every 4 weeks to check her. They told us they want me to go 39 weeks, but if she starts measuring and growing at a different rate they may have to take her early. We meet with the Cardiologist on September 30 and will update you again then. Thank you for all the love and support! Jeff and I appreciate you all!

Goodbye Machel and a Congratualtions Paul!

Tuesday was a sad day for me. I had an appt. with Machel and apparently I won't be seeing her anymore. I will be going to a Perinatologist at McKay to keep track of Grace and I until after she is delivered. I will be seeing Dr. Andres who is said to be one of the best. He travels back and forth from the U and McKay from what I understand. We will be going to see him on Tuesday, September 15 and will learn more then. I am so sad that Machel won't be taking care of us anymore, but there is a good chance that Dr. Andres will be the doctor who will deliver her and it will be great to know him before hand. I don't think we will be getting so see many ultrasounds anymore that show much more than her heart. So, here is one of the last looks at her before she comes. I love these profile pictures. She is so happy and content now, she has no idea that she is sick and has a heart that isn't quite perfect.

On a VERY exciting note, Paul Cardall, who is a local Utah musician, finally received his heart transplant after being on the waiting list for nearly 400 days. A few months back we attended a benefit concert for him in Salt Lake. Who knew that this would become a little more personal than it was then. He also was born with CHD, including what Gracelyn has, along with other problems. He has recently become very ill and has made Primary's his permanent home. I've been so worried to see on the news or his blog ( that he had passed away. I was SO happy today to get a call from my mom that his heart finally came and that he is doing so well. It is hard to be so happy for him knowing that this happiness for his family came at another's family expense, but what greater gift and sacrifice. I pray God will bless both of these families.

Her Name: Gracelyn Louise

I have always felt that I wanted to wait for our babies to be born to name them. I have also felt that I didn't want our girls to have middle names. Things change.

We decided that it would be best to give this baby girl a name now. There are many prayers that need to be and will be said in her behalf before she is born. It will just feel better having a way to refer to her.

I searched for a name that stood for strength and courage. I didn't find anything that seemed right. Gracie was the first name that came to my mind when we found out we were having a girl. Others have come up since then, but we wanted to wait for her to be born. However, it does seem to fit now.

Grace is a "virtue name." It means the grace of God, in favor of God, a blessing.

Louise. The name Louise means famous warrior. Fits those whose name it previously belonged to. I find no better name for strength than to name her after her great-grandma Murray, a great example of enduring a life of heart problems. A warrior. She was one of the first in the state of Utah and nation to have open heart surgery. Through her life she had a total of four open heart surgeries and lived nearly 60 years after her first. One of her surgeries was done by Elder Nelson. They came up with a way to stop her heart for five minutes and they taped a blade to their index finger and did what they needed and had her heart back and going in that five minutes. My mom has told me that she is at peace with this and confident that all will be OK in the end, not easy, but OK. After talking with my sister-in-law, I've realized that maybe a lifetime of taking care of my Grandma's heart problems has prepared her for this. When my grandma was pregnant with my mom she was told to abort, my grandma wouldn't. When my mom was two months old my grandma went in for open heart surgery and wasn't ever able to hold my mom or take care of her as an infant. She has also experienced two open hearts for her dad and one for her sister.

-Lyn, well, that just sounded cute with Louise, and made the name not so common.

We approved it with Mr. C and he likes it! Baby Grace!

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!