Update Part 2

Hello all! We are so grateful and humbled by the amazing way the Lord has used Rebekah's story and her blog. We have had so many comments and emails already from you telling us how the Lord worked in your children's lives during a similar journey. We are also very thankful for all of you who have written to let us know that you will be keeping us in your prayers. Please be patient with us - we are trying very hard to respond to each of your comments and emails! If you don't hear from one of us, it is probably because we could not find a blog and/or email address to respond to, but we are still very thankful for your support!

In the last update, I tried to give you an overview of Truncus Arteriosus as it was explained to us by Rebekah's cardiologist. Dr. Lucas walked us through a fairly detailed description of what Rebekah's first open heart surgery will be like. Once she is assessed at birth, her surgery date will be determined (usually one week after birth, but could be sooner or longer depending on circumstances and how stable she is).  Barring any serious complications, her surgery will be scheduled first thing in the morning and she will be taken to the OR around 6:30 to be prepped. Dr. Lucas said it is a fairly lengthy surgery, and she will probably not return to the recovery room until 1 or 2 in the afternoon if all goes well. She will be put on life support during the actual 60 to 90 minutes that her heart is operated on. She will also be on a ventilator during surgery and afterward until she is able to tolerate breathing on her own again. During the operation, the doctors will insert a man-made conduit into the right ventricle of her heart leading into the lungs. They will also close a large hole between the left and right ventricles of the heart. Dr. Lucas said that the surgeons will determine in the OR how large of a conduit they will place - too large will flood the lungs with blood, making them work much harder; too small and it will have to be replaced much sooner than otherwise necessary. After the conduit is placed and the hole is closed (again, assuming they find no other defects or complications that need to be addressed), Rebekah's chest will be left open to allow the heart and lungs to swell after surgery. A saran-wrap like bandage will be placed over the open incision and she will be returned to recovery. In two to three days after surgery, the doctors will tie her sternum back together and close her incision if the swelling has gone down and things look good. This procedure will be done in the PCICU and not in the OR.

Dr. Lucas also gave us quite a bit of information about what her life will look like as she grows. Following Rebekah's discharge from the hospital, she will be seen at least weekly by her cardiologists, and if things continue to go well, the length of time between visits will gradually increase until she is seen on a yearly basis. At some point usually around 3 or 4 years old (sometimes as early as 1 or 2 and could be as long as 5 or 6 years), she will outgrow the conduit that was inserted at her initial surgery. Dr. Lucas did not give a lot of details (we will get them in the coming months), but he did say that some signs will be shortness of breath, fatigue, sweating and not being able to keep up with her peers physically. At that time, Rebekah will need to have a second surgery to replace the initial conduit with a larger one. Usually in the pre-teen years (11 or 12) and again when she is grown (17 or 18) the conduit will be replaced again. In rare occasions, especially if she does not grow quickly or get very big, she may only need 2 of the 3 replacements. Rebekah will always have at least yearly testing on her heart and an exam with her cardiologist to make sure that her heart is working well and things are still in good shape. 

We are so thankful that we have the ability to prepare for what Rebekah will be facing at birth. I have heard from many moms who found out at birth, or even weeks later that their son or daughter had a serious (or even life-threatening) heart defect. We are blessed to have superb medical care, and most of all to know that the Lord holds Rebekah in His hand each step of the way.

Nancy