Lucas, born 2010

Lucas was born on September 30th, 2010. He was diagnosed in utero with HLHS. I was induced at BWH at 39 weeks. He was perfect. He was breathing on his own, a little jaundice, and a perfect little angel. At 4 days old he had his first open heart surgery at Children's Hospital Boston by Dr. Baird. The hardest part was giving away our baby who looked flawless and seemed fine to be cut open and to have his heart stopped. The surgery went beautifully. He was given the Sano Shunt with some coils in it to keep it from collapsing. We were shocked that it took us only about a half hour to adjust to seeing him in Post-Op. He looked horrible, but he was ours. I could still pet his head and unfurrow his brow. After the vent was removed he started to wake up. He ended up with chylous effusions so he had to go on a special formula and we had to stay another week or so than typical, but soon enough he was drinking his first bottle and shortly on his way home. He weathered his first colds, and ear infections beautifully. We quickly got used to the constant weighing, measuring, medicines, and check ins. In the mean time, he was just being a baby. He developed some food allergies and GERD. But was only a month or so behind his peers in rolling over and sitting up.

 

At 6 months old he had his second surgery at Boston. Again the surgery went beautifully. However, he had developed a collateral the size of his aorta. They had to hunt for it so he had some clotting and bleeding and fluid around his lungs. A day later he was back in the OR for a chest wash out. Lucas was so strong he spat his own ventilator out while sedated. So he did code in the CICU. The staff was wonderful and his heart never stopped. He ended up with chylous effusions again so we were back on special formula and an extra week or so of recovery. Soon enough we were home. He no longer panted while playing and no longer needed as much rest.

 

Today, is a highly energetic, loving, and social little boy. He will be walking any day now and is in the 50-60% percentile for height and weight. He also loved swimming at the YMCA and has even started putting his face in the water! He's our little miracle. Every day is journey. There are more fears, more stress, and more frustrations. What you get in return is the ability to cherish every moment.

 

Story by Lucas' mom, Becky - Massachusetts

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