Here is an awesome update that my husband Todd put together explaining everything from last Wednesday.
We both left there feeling encouraged by the news and with the relief that we at least finally know what is going on. Here's the skinny.
Eli has Hypoplastic left heart syndrome. This condition starts as Critical Aortic Stenosis and turns into the former.
This means that his left ventricle is small and not functioning well. There is some flow and the aorta is small, but not extremely small (a good thing).
When Eli is born he wil be stabilized immediately and then will have his first surgery within 10 days of birth. The number of days will be determined by the severety of the condition when he is born. A secondary option if the situation is too complicated would be heart transplant.
The first surgery is called the Norwood Procedure. In this procedure a shunt (B.T. Shunt) is inserted to create a new pathway to bypass the left side of the heart. Afterwards, his recovery in the hospital will be one month mimum. This surgery has an 85% survival to operation rate. There is a 5-10% mortality rate between this first surgery and the second one.
The second surgery is called a Bi-directional Glenn. This is where the shunt is removed. It will occur at about 3 months of age. This surgery has a 95% survival rate and the recovery hospitalization is about 2 weeks. The mortality rate afterwards is less than 5%. After this surgery Eli will have quarterly visits to his cardiologist there at Vandy.
The third procedure will not happen until he is 2 or 3 years old. I'm sorry I don't know what this entails.
Overall we are encouraged and hopeful. It's such a relief to know there is a plan in place and that this will all happen in such a quality hospital. We felt well taken care of.
Also, Vandy Children's Hospital is awesome! It's super kid-friendly with the decorations and even includes a play area for the siblings of patients!
We go back again in three weeks to have a tour of the facility. Also Dr. Parra will monitor the progress of Eli's Mitral valve and Atrial septum. Lastly we will get to meet with the surgeon who will be performing the surgeries.
We know this whole process will be long and exhausting. We know that Eli's survial is not guaranteed. However we also know we serve an AWESOME God who loves us and will never leave us. He has also promised to never give us something we cannot handle.
Please pray for Eli. Jesus is the Great (pediatric cardiology) Physician and can heal his heart completely in the blink of an eye. ;)
Also please pray for Beth, the kids, myself and the rest of our family as we endure this ordeal. I can tell you I am strengthened at times when I know I should be in dispair. This tells me that God is present and is in many ways already answering our prayers and the prayers of many friends and family.
I look forward to sending out additional information as we learn more. I'll keep everyone posted as best I can but don't hesitate to contact me if you have questions.
Below is a link to Vandy Children's hospital and specifically, Dr. Parra. He will most likely be Eli's cardiologist for years to come. If you can, check out the rest of the site. Vandy Children's Hospital is a cool place!