Proudly Introducing to the world our sweet daughter

             On December 3rd, 2015 Christopher and I joyfully found out that we were pregnant.  We could not be more excited to become parents and start this new incredible journey.  At our 12 week appointment, however we found out some unexpected and concerning news, our sweet baby had a birth defect.  This defect is called an omphalocele, where some of the baby's organs are forming on the outside of their abdomen wall.  In our baby's condition these organs were growing in the middle of her stomach.  A typical ompahlocele means that the organs that are involved are in a protective sac.   At this appointment the doctors informed us that another concern is that ompahlocele babies are at an increased risk for multiple chromosomal abnormalities and other concerns. Some of these chromosomal abnormalities did not have a very long life expectancy after babies are born.   That very day we met with a genetic counselor and after a very long conversation we decided as a team that I would have a chorionic villus sample (CVS) taken from the placenta that will give us information on baby's chromosomes and we can proceed from there.  Many tears were shed and multitude of prayers began just to help ease our fears.  How could this be happening to us and why was this happening were just some of the many questions going through our heads. We were facing the fear that our sweet baby would be born and not live very long in this world.  We felt incredible powerless in this situation. 
            The next day our genetic counselor called and we received the best news since our sweet baby was diagnosed with the omphalocele, she did not have any of the major chromosomal abnormalities (Downs, trisomy 18 and trisomy 13) which was a huge sigh of relief.  Lots of happy tears were shed! The weeks that followed we continued to receive positive news about our sweet baby with more negative results from the CVS. However the work did not stop there, this began our long journey, preparing for a completely different newborn experience. 

           At 18 weeks we found out that our sweet baby is a girl.  We spent a wonderful weekend surrounded by our family and some of the most amazing friends to have fun and celebrate our baby girl.  We were beyond excited to take a couple of moments so we can focus on a "typical" happy milestones while being pregnant.  At 20 weeks came our big appointment, where we had a fetal MRI, an Echocardiogram, and an Antinomy Scan and meet with the pediatric surgeon, genetic counselor, and the neonatologist.  This is where as a team we developed our delivery plan for baby girl and discovered what the next several months after will look like.  The wonderful staff we meet with at Children's National was incredible and answered questions with us for over an hour. At this time we knew that we could expect an average NICU stay of 4 - 6 weeks and her surgery to correct the omphalocele would occur somewhere between 6 months to a year.