I never knew how much I could miss home until I spent the majority of the summer away. On June 17 we were blessed with a beautiful baby girl. Her name is Kaiya and she is our little fighter!
Our daughter was born with a congenital heart defect called truncus arteriosus. Pretty much she had a whole between her ventricles and she had one large valve pumping blood to both the lungs and to the rest of the body. This would cause her blood saturation levels to bounce all over the place because the body was getting blood that was not oxygenated. We later found out that her heart condition was caused by a syndrome called Di George syndrome. It is similar to Downs in that it effects many areas of the body and development. We spent most of the few two months of her life in Children's Mercy Hospital in downtown KC.
One July 12 Kaiya had her first surgery to correct her heart defect. The surgeon patched the whole, disconnected the large valve form the aorta and put in a new valve for the aorta. It was a scary day but we had people there who loved us and Kaiya and it made the day seem so much better. Kaiya was in the PICU after surgery and seemed to be doing really well and week out form surgery and she got a serious bacterial infection. We were not aware of this that evening but we were very close to losing her that night. The nurse that we had the next day told us that her lactic acid level was 24. Most people have a lactic acid number of 2. When you exercise for instance, your body does not get as much oxygen and to the number goes up. So when you think about it, Kaiya's little body was shunting all of her body away from her limbs and using it for her major organs. It is still a little frightening to think about but we know that God's hand was on Kaiya that night and we just thank Him for our special gift.
After recovering from surgery and from her infection Kaiya moved upstairs for 4 Sutherland, the heart floor. She was doing great but she had started to vomit almost every time she ate. The Dr's figured out that it was reflux and that it was pretty severe so they suggested another surgery where they go in and wrap the top of the stomach around the bottom of the esophagus. It was called a fundoplication and we also had to put a feeding tube into her stomach. We will have that for awhile but we are working with therapists to help her suck. She is not able to take ANYTHING by mouth until she passes a swallow study. She will have another one around 8 months. We are also working on head control and strength. She was in the hospital for so long and not able to get out much so she is not where she should be but she is getting stronger everyday and we are looking forward to her getting around soon.
While we were gone at the hospital our son, Benji, spent a lot of time with Grandparents, Aunt and Uncles. He did pretty good considering but we are just now getting back to normal at our house. We are very proud of Benji, he is very smart...smarter than his parents. He is great with Kaiya too. He sits down beside her and talks to her. His name for her is Sweet Pea Kaiya Marie. It is pretty sweet!
I am out of words for now. I will post again soon and hopefully more often.
