Welcome to our Caring Bridge page! We will be using this site to keep our friends and family updated on our daughter's birth and condition. We are so blessed that so many people care about us and are praying for us and hope this is a good way to communicate with you all!
As many of your know, we found out around the 12 week mark in the pregnancy that our daughter has Down syndrome. "Down syndrome is the most common chromosomal condition in the United States and approximately one in every 700 babies or 6,000 babies a years are born with Down syndrome in the United States. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21 which alters the course of development and causes the characteristics associated with Down syndrome. Each person with Down syndrome is a unique individual and may possess its characteristics to different degrees, such as low muscle tone, small stature and mild to moderate cognitive delays." (source: Triangle Down Syndrome Network)
Upon receiving the news in mid September that our daughter would have Down syndrome, we were obviously shocked and worried about her future. Since then, we have learned a lot about the potential for individuals with this condition and are very confident that our daughter is going to be the amazing, beautiful, smart, funny, playful little girl that God had in mind for us all along.
We plan to deliver the baby at WakeMed Hospital around the middle of March. Our son, Graydon, was born there and we had a great experience with the hospital. WakeMed has a Level 4 NICU, which is the highest level of care for newborns that you can find. At this time, there is no reason to believe we will be in the hospital for an extended time or that our daughter will be in the NICU. We are praying for a smooth delivery and to be home soon after birth. Please join us in that prayer as Adelaide & Graydon (and mommy and daddy) will be anxious to have her home with us!
Around 18 weeks of pregnancy we found out that our little girl also has a congenital heart defect, called a Complete Atrioventricular Canal defect (AV canal defect/CAVC). A complete AV canal defect is a "large hole in center of the heart affecting all four chambers where they would normally be divided. When a heart is properly divided, the oxygen-rich blood from the lungs does not mix with the oxygen-poor blood from the body. A CAVC allows blood to mix and the chambers and valves to not properly route the blood to each station of circulation." (source: American Heart Association) This is the most common heart defect among children with Down syndrome. Open heart surgery will be required when she is approximately 4 to 8 months old. In January, we met with the surgical team at Levine Children's Hospital in Charlotte and we were very impressed with the facility and doctors, nurses and support staff we met there. They are very confident in a positive outcome and they perform this type of surgery quite often.
We are so thankful to all of you for your prayers, concern, cards, emails, phone calls, text messages, etc. over the past few months. We have realized how much we are loved and this has made a huge difference in what has been a challenging time.
Love to all!!!
Jeff, Lizzy, Adelaide & Graydon
Psalm 139: 13-16 You formed my inmost being; you knit me in my mother’s womb. I praise you, because I am wonderfully made; wonderful are your works! My very self you know. My bones are not hidden from you, When I was being made in secret, fashioned in the depths of the earth. Your eyes saw me unformed; in your book all are written down; my days were shaped, before one came to be.