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Isla just before her operation

Three days after Isla was born, our pediatrician discovered a heart murmur. The news of Isla’s murmur was a complete shock since there were no signs of heart issues during pregnancy. Over the next several weeks, Isla’s life and ours were turned upside down. Isla was eventually diagnosed with Tetralogy of Fallot. She had corrective surgery at 5 ½ weeks old. Looking back, the first six weeks of Isla’s life seem like a blur. Everything happened so fast, which turned out to be a blessing in disguise. We had very little time to dwell on her diagnosis. Thankfully, Isla’s surgery was successful, but she will never be truly out of the woods. The good news is that Isla does not know she has a congenital heart defect. From the moment she was born, Isla has always been alert, wanting to be part of the action. She loves to eat and will let you know when she wants something. She is content to hang out, but also likes to move around. She has jumped in her exersaucer and crawled over obstacles to get a toy. She has even tried to tackle her older brother and take toys away from him.

Isla was what is called a pink tet. Even though she had a large hole in her heart with her aorta overriding the hole, and significant pulmonary stenosis, her heart managed to keep well oxygenated blood circulating through her body. The surgery closed the hole which also aligned the aorta correctly above the left ventricle. Her valve was opened up to decrease the amount of pulmonary stenosis and allow blood to flow to her lungs a bit more easily. Isla continues to be seen by a cardiologist to monitor the pulmonary stenosis. It could get worse again over time requiring more intervention. In the meantime, Isla continues to not be aware of her heart defect, something her family is extremely grateful for.

Cody

God was preparing us for Cody, our fourth son, long before we even knew we would have four boys. Because I had gone into pre-term labor with my first three pregnancies, my doctor decided to schedule another ultrasound at Week 28 just to check on things. When the ultrasound technician kept saying that she couldn’t get a “good view” of the heart, I wasn’t sure why it mattered since I wasn’t there for that reason. A second technician came in and got the “good view” they were looking for, but when she said that I needed to see my doctor one more time before I left, I knew that something wasn’t right. Looking back, if I hadn’t gone into pre-term labor with my other three boys (who are healthy), then the doctor would not have scheduled that extra ultrasound and we wouldn’t have known that Cody had a congenital heart defect. Judging on how healthy Cody looked when he was born a few weeks later, I believe we would have taken him home and that he would have had heart failure at a couple of weeks old. We always wondered why my body went into labor early, but now we know it was all a part of God’s plan.

After multiple trips to Charlottesville (1.5 hours from home) for ultrasounds to determine Cody’s specific heart defect, he was finally diagnosed in utero with Double Inlet Left Ventricle, Hypoplastic Right Heart and Transposition of the Great Arteries. Basically, Cody has a complex heart defect and only three chambers in his heart. At 37 weeks (the longest pregnancy for me) I went into labor and we made the fast drive to Charlottesville in the wee hours of the night, arriving at 3am. Cody was born naturally at 6:30am, and after a very brief time in my arms was taken to the NICU (Neonatal Intensive Care Unit).

When Cody was 2 days old a nurse from the surgical team came to Cody’s bedside to talk about the details and the possible risks of his upcoming heart surgery. I have never felt so compelled to literally drop to my knees in prayer than at that very moment. At 9 days old Cody had his first heart surgery – the DKS procedure. The doctors took him at 10:30am and at around 5:30pm we were told that he was coming back from surgery on the ECMO machine. This is the ultimate life support system – it pumps for the heart and breathes for the lungs. Because Cody’s left ventricle was not pumping strongly enough to take him off the bypass machine, the ECMO machine was used to give Cody’s heart some rest. Cody’s surgeon told us that less than 5% of surgeries end up on ECMO, and about half of the children on ECMO are able to come off the machine successfully. Praise God that Cody came off ECMO one day later.
Because Cody was very swollen from inflammation (he gained half of his body weight!), his chest remained open and he was still breathing with a ventilator. His chest was closed a week after surgery, and four days later the ventilator was removed. Eleven days of silence were broken with Cody’s hoarse little cries. Holding Cody in my arms two weeks after his surgery was like a dream!

Cody and Gina

At one month old Cody was still recovering – dealing with a collapsed lung due to extra fluids, learning how to eat, and weaning off oxygen and medications. Just when it seemed that home may be near, Cody’s chest got infected and the lower stitches on his chest re-opened. Back to the operating room, intubation, and anesthesia, and of course antibiotics were added to the list of meds. Living in the hospital with Cody was a roller coaster of fearful emotions, calm faith, intense moments, and quiet stability. We celebrated Cody’s chest being closed again, and then the next day prayed while a defibrillator shocked Cody’s 200-beats-per-minute heart rate back to normal. The roller coaster continued through the next week: excessive bleeding from a central line, blood transfusions, breathing machines, Cody’s chest re-opening, being stitched again, and then re-opening just days later. After 52 days in the hospital, we finally took Cody home. Daily readings on an oximeter and changing the dressing on Cody’s chest which was still healing were nothing compared to what we had experienced in the hospital. Despite the challenges and the rough road, our gratitude for the countless simple things in life just overflows. What blessings are all around us, all the time!

Cody’s second heart surgery – the Glenn – was in January 2009, a short three months after returning home from the first surgery. This time was a completely opposite experience. We arrived early Monday morning, and were home with Cody that Friday afternoon. Absolutely amazing! Cody is thriving, learning, and growing! By looking at him, you would never know what he has been through. Cody’s third surgery – the Fontan – will be sometime when he is 2 or 3 years old. Cody’s website is www.caringbridge.org/visit/codybeck. You can also see his video on www.youtube.com. Just search for “CHD DILV Cody.” Because of the complexity of Cody’s heart defect, Cody’s heart will never be fully repaired in the sense of how a normal heart functions. For complex heart defects like Cody’s, all of the re-structuring and re-routing that takes place over the course of the three surgeries creates a system that basically functions as two chambers, or half of a heart! Modern science, the doctors and nurses, and of course our awesome God work together to create many grand miracles for our little heart babies every single day!