Here's 2 pictures of our precious Cayla from this past Friday's ultrasound with Dr. Rajabi.
I was going to buy a journal and write the story of Cayla Joy, but then thought I'd set up a blog instead. So, here we are. I'm ready for a nap after trying to figure out how to set this up. But onward we go.
I am just going to start where we're at now and back track the past months at a later time.
We found out this past Friday that Cayla has a pretty severe heart defect. It's called Hypoplastic Left Heart Syndrome. The left, and primary pumping side, is extremely underdeveloped. The specialist, Dr. Rajabi from Cleveland Clinic, needs me to have an amniocentesis test done this Wednesday the 8th in Cleveland to determine the cause of this heart defect. It could be caused by a chromosome imbalance, (not good) or it could just be a congenital heart defect all on its own (much better). The sample of amniotic fluid will determine the cause. It takes 10 days to complete the chromosome test. There are 3 chromosomes that could cause this problem, #13, #18, or #21. He said the 13 and 18 usually result in death either before delivery or shortly thereafter. There are babies that have lived with the 18, such as Rick Santorum's little 3 and 1/2 year old, but that is extremely rare. The 21 is Downs Syndrome, which would be ok, just adding another problem to her heart problem, but still ok. So... we wait to find out in 2 and 1/2 weeks. The importance of the cause determines what happens these next 3 months. If it is a chromosome problem, they will see me at delivery. There is nothing they can do. If it is not, they will run an intensive series of tests and ultrasounds to gain as much information about the heart as possible before birth to determine who and what needs to be present at birth. She will need surgery within the first week of her little life and then again at 3 months and at 2 or 3 years old, I think. She also has a club foot, on the left side and there might be other problems on her left side. This is apparently easily corrected with today's technology.
Here is a link to a website that explains more if you're interested to find out more. http://en.wikipedia.org/wiki/Hypoplastic_left_heart_syndrome
There's so much more to say, but the most important thing of all is that we have a precious gift from God that we never planned on, but He has seen fit to give her to us at this stage of our lives. I don't even pretend to understand this, which would be trying to understand the mind of God, but I can accept it whole-heartedly because I know the Creator. She is fearfully and wonderfully made by God, just as He planned. Who am I to argue with His purposes? God will get all the glory for this precious little life He has chosen to create. If He decides to take her back after a short time with her, that will be a hard pill to swallow, but it will be for His glory. I am obviously praying that He decides to let her live even though it will be a tough life. God is in control of it all and knows what His purpose for Cayla's life is. I actually feel honored that God is trusting us with this precious little life who will obviously need much care over the years. You know, He could have the doctors see all this and then choose to heal her. Who knows. We just get to wait, trust, and rest in Him and His promises! To God be the glory!