Everyone was leading us to believe the Norwood surgery would be Thursday at the earliest, so we were definitely caught off guard when Dr. Ilbawi's nurse called this morning to tell us the surgery could be tomorrow (Tuesday). What was expected to be a fairly non-eventful day at Christ visiting with Jonah ended up being a whirlwind of a day asking questions, signing consent forms and mentally preparing ourselves. It is good news to have the surgery scheduled this soon. They look for these babies to be in the best condition possible, and all of Jonah's tests and labs prove he is ready to go. Also it seems like with each day he lays sedated in the NICU, he looks more bored and uncomfortable.
As of now, surgery is set for 9:30am cst. Of course this could move based on a number of factors, eg. Jonah's overnight stability, the surgeon and staffs availability, and the progress of the surgery scheduled before Jonah's. If we don't receive a phone call between now and 5am, we can assume the surgery is on schedule. Our plan is to get there around 7am to see him off. Fortunately, we will get some time to hold him (albeit with tubes and all connected), and we be a part of the entourage that transports him to the OR.
Jonah will be in the OR for 6-8 hours. That includes roughly an hour of prep work, opening the chest, 3-4 hours of actual open heart surgery, and 2 hours of monitoring and tweaking as necessary. They will stop his heart and use a Heart and Lung Bypass Machine to do the breathing and pumping of oxygenated blood to Jonah's body on his behalf. Also as part of the Norwood they will not close his chest afterwards. Instead they cover his heart with a sealed transparent dressing as they wait a couple days for the swelling to decrease before closing up his chest. As you can imagine, he will look a lot different when we see him post-op. Jonah will remain hospitalized in the pediatric surgical heart unit, where he will get his own room, for roughly 4 weeks depending on how he recovers. Survival rates of the Norwood are 85-90%.
We have had numerous professionals explain and draw out the Norwood surgery and what it is they try to accomplish, but it still is something I cannot intelligently recapitulate. So I will plagiarize...
The Norwood is the first of 3 surgeries to treat Hypoplastic Left Heart Syndrome. The pulmonary artery is separated from the heart and connected to the underdeveloped aorta. This enlarges the aorta and allows both oxygenated and deoxygenaged blood to get to the body. Additionally, a shunt is placed to allow blood to flow from the upper body directly to the lungs, bypassing the left side of the heart all together. From the lungs, blood flows to the heart to be pumped out to the body carrying the oxygen. This allows the baby to grow out of infancy with more oxygenated blood reaching the body. The blood flow through the pulmonary circulation allows pulmonary arteries to grow better, in preparation for the next surgery, which will be at 4-6 months of age.
Imagine all of this on a heart the size of a walnut and vessels the width of a hair...it's unfathomable to think that a human hand is capable of such a complex surgical technique! Our prayer tonight is that God will guide Dr. Ilbawi's hand and heal Jonah's heart to the best of his abilities.
Everything we have learned since April has led us to this point. Tomorrow defines Jonah's future and quality of life. The Norwood is the most difficult of the three surgeries and it's importance cannot be underestimated. With that said, kick those prayers into high gear! We have personally been touched by each and every phone call, email, letter, comment, thought, and most importanly, prayer. We have never felt so much love from our friends, family and even strangers - and we will continue to channel this as we look for strength to fight for Jonah.