Our five year anniversary....

I honestly can say I never imagined hearing this news on my five year anniversary. Brandon and I woke up and got ready for our ultrasound with the specialist at UMC. On the drive to UMC we prayed. We prayed hard! We arrived to ADU (the high risk clinic at umc) for the ultrasound with the specialist. The specialist comes into the room and immediately sees the omphalocele. He was able to tell that the omphalocele consisted of small intestines, part of the liver and the ilium which is connected to the small bowel. The omphalocele is a balloon like feature that comes out of the "belly button" area. He also noticed something very unusual about our babies omphalocele. It looked like an elephant trunk sticking out of the side. This was the ilium sticking out of the side of the omphalocele. This is known as "elephant trunk" syndrome and is extremly rare. So rare that the specialist had been at umc for 25 years and had only scene it two times prior. The specialist then began to look for the bladder and could not find one. The Dr. knew exactly what our baby had. It was cloacal exstrophy also known as OEIS complex. OEIS complex is an extremly rare disorder. It occurs in 400-500,000 births. With my heart in my stomach the Dr. began to tell us how it had never been operated on in the state of Mississippi. He immediately called John Hopkins and the Childrens Hospital of Pennsylvania to inform them of his findings. I felt like everything I had just found out about my beautiful child was a dream and I would soon snap out of it. I still had to have an amniocentesis(they stick a needle through your abdominal wall into your uterus to draw out a small amount of amniotic fluid) on this day to determine if there were any other chromosomal or genetic disorders. To my suprise they use no numbing medications!! OUCH!!! One of the best things that happen to us on this day, well by far the best! We got to meet the coordinator of our care. She has been an absolute blessing. She schedules all of our appointments, calls just to check on us and makes sure that all of our questions and needs are met. God knew exactly what he was doing when he put her on our case. I could not do it witout her! After we met with her it was time to go home. I remember leaving the hospital devestated. It was one of the first times in my life that all I could do was rely on God. It was the most helpless feeling knowing that something was wrong with my child and there was nothing I could do about it. Brandon and I went home and prayed and prayed and prayed. We put everything in Gods hands and handed it all over to him....