Our Decision

Here are a few ultrasound pictures of our little Mia. The top one is a 4-D ultrasound of her cute little face. That picture was actually taken about 3 weeks ago. The second is a regular ultrasound of her profile, she's sucking her thumb.

Last week we got the opportunity to visit the Denver Children's Hospital and have made our decision in regard to Mia and the actions we're going to take. All of our amniocentesis results were normal...huge relief. So we will be going ahead with the pregnancy and having the three open heart surgeries performed. We will be having those done at Children's Hospital. We were pleasantly surprised to find out that I will also be able to deliver right at Children's Hospital. Since I had a c-section with Izzy, I will be having a planned c-section again. We can only pray that I don't go into labor early. Upon delivering the baby, she will be able to stay with us for probably about 6 hours and then they will take her to the NICU. Hopefully I will be able to get up and around quickly so that I can go to the NICU and be a part of the first few days while I'm recuperating. The first surgery (the Norwood) will happen anywhere between her first 4-10 days of life. It will depend largely on how her lungs are developed. They will keep our Mia alive by giving her a medicine to keep a valve open, one that is right now connected to me through the umbilical cord. Once a baby is born, that valve usually closes within a few days. The medicine that they will give her will keep her valve open and will keep her alive. This valve will keep her heart pumping blood and oxygen throughout her body until the surgery is done. The first surgery is the most crucial and holds the highest risks. If all goes well with the delivery and the surgery, we should be able to take Mia home in about a month.

We will be "moving" to Denver during this time to the Ronald McDonald House. The one we will be staying in is only about 5 minutes from the hospital. It's so hard for me to imagine how our lives are going to change during that time, but it seems more tolerable now that we have the initial planning started. We are going to go back to Denver on August 18th for an appointment with the doctor that will do my c-section and to meet the surgeons at Children's. I have to admit that I have my good days and my bad days. Some days it seems like nothing is different and we just keep chugging along. Other days I can't stop thinking about the possibility of something awful happening. But on those days, I look at my wonderful husband and my precious daughter and I realize that I have so much in my life. And Mia will be just one more special, priceless thing to add to everything I already have.

Returning to Blog

It has been a very long time since I have written on my blog. I guess with all that is going on, what better time to start back up. In February we received the wonderful news that we are expecting our second child. After two miscarriages we were both very nervous about the pregnancy. We opted not to tell anyone until I entered the second trimester. Once we were to that point, we were beyond thrilled. Ultrasound confirmed a growing baby and a beating heart. My pregnancy has been very normal and easy, with the exception of extreme tiredness. At the beginning of June we went in for our first ultrasound hoping to hear nothing but good news and find out if we were having a girl or a boy. The ultrasound tech was unable to see our stubborn baby's little parts and said that there was a shadow over the heart and we would have to come back. The next week we went back in. We got the exciting news that we are having a girl! But still, not good heart pictures. We went back again two weeks later. The ultrasound tech thought that the heart looked good and that we were good to go. The next day my doctor called to let us know that he had looked over the pictures and he still didn't think it was the best picture possible of the heart. So he was referring us to a perionatologist (high risk doctor) in Denver. The next day we went to see her and our lives changed. She was able to get better ultrasound pictures, but those pictures came along with bad news. She wasn't entirely sure of the problem at hand so we walked away with the possibility of two different heart defects and a completed amniocentesis. We will get the results of the amniocentesis on Tuesday. On Friday we were referred to a Pediatric Cardiologist in Lone Tree. We went there and they did an eco-cardiogram ultrasound on Mia's heart. That doctor has confirmed that Mia has a serious congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS). Basically what this means is that the left side of her heart is extremely underdeveloped and will never develop. The only thing keeping her alive right now is the fact that my body is providing her with the oxygen and blood that she needs. In order to fix this problem, a surgeon will have to do three rounds of open heart surgery. One when she is less than a week old, one at 3-4 months of age and one at 3-4 years of age. The surgery would essentially create a bypass around the left side of her heart so that her right side will do all the work and she would live with a two chamber heart. We did find out that the chance of her also having Down Syndrome is extremely low with this condition, but we will know that for sure on Tuesday. We do know that I should be able to carry her full term and that I will have to deliver her in Denver. Art and I have a very difficult decision to make at this time, the hardest of our lives. Please keep our family in your prayers, we are in need of lots of support right now. You read about these things happening to people, but never think it will happen to you. Today we will be awaiting the test results of the amniocentesis. The results of that test will more than likely be the deciding factor in our decision of what to do. I have gone through one time in my life that has been as hard as this, but the difference is that then it all involved my well-being. This involves the well-being of our unborn child. They tell you that being a parent is hard work, well, I never imagined it would be this hard.