The doctor explained to us that our little girl has what is called Hypoplastic Left Heart Syndrome or HLHS for short. This means that her left ventrical in her heart did not form. In order to understand what this means you first need to know how a normal heart works. First blue blood (blood that has been pumped through your body and doesn't have any more oxygen in it) is pumped into your heart into your right ventrical. The right ventrical pumps the blue blood into your lungs. Your lungs oxygenate your blood turning your blood into red blood. The red blood is pumped into your left ventrical and your left ventrical then pumps the blood throughout your body.
As you can imagine, your left ventrical is a very important part of your heart. Your left ventrical also determines your blood pressure. There is no cure for HLHS, and only a few years ago if someone was diagnosed with this they were sure to die shortly after birth. We have been blessed to live in a time where we have had great medical advancements. Zoey will have to have 3 surgeries on her heart. Although these surgeries will not cure her, they may allow her to have more time here on earth.
I will be induced and deliver at the University of Utah Hospital. Right after birth Zoey will be taken to Primary Children's Medical Center where they will stabilize her. After she is stabilized (this can take up to 5 days) she will have her first surgery. This surgery is called the Norwood. After surgery, Zoey will stay in Primary Children's for 6-8 weeks.Her second surgery will take place when she is 4-6 months old. The third surgery will be when she is 2-3 years old. By the time the 3rd surgery is performed her right ventrical will no longer pump blue blood to the lungs, but will pump red blood to her entire body. As the blood returns to her heart it will pass through her lungs oxgenating the blood before returning to the heart. The reason why this is not a cure is because her right ventrical is made to pump blood to the lungs and is not as strong as the left ventrical which is made to pump blood throughout the body. This being said, the right ventrical will eventually give out.
Zoey is a fighter though. She hates ultrasounds and every time we have one (we have had 4 so far and have many more coming) she kicks the ultrasound machine and tries to hide. Every ultrasound technician has complained about this. Adam and I find it cute, but apparently if you are trying to get the pictures of her you don't find this cute. :)
I have thought a lot this week about a sign that was given to me a few months ago that says, "Life is not about waiting for the storm to pass, it is about learning to dance in the rain." We are going to dance in the rain and treasure every moment! Looking back over the past few years and months, it amazes me how Heavenly Father has set us up and prepared us to take on this challenge. Although I don't know why it has to happen, I can see that it fits into his plan. Just one example of how he has helped us get ready for this is with insurance. Adam and I have insurance through IHC, however, back in September we felt very strong that I needed to go back and work at 1-800-CONTACTS so that I can get insurance through them. Right now, we are double insured. This is a wonderful blessing. By the time Zoey comes I will be working from home at a 24 hour call center. This means I can choose my schedule to best meet the needs of our family 24 hours a day, 7 days a week. How grateful I am for the gospel of Jesus Christ and the tender mercies I can already see God has blessed us with. If any of you are wondering if there is anything you can do, please just remember to keep Zoey in your prayers. We are truley grateful for all the love and support from our friends and family.
For more information on HLHS go to http://hlhsinfo.homestead.com/
If you have any questions, please ask me. I am definatley not an expert, but I am learning! :)