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by Marta Elena Cortez-Neavel |

Meet Tristan, as introduced by his mother, Katie:

"Tristan was an anxiously-awaited addition to our family. We had a scheduled C-section set up for November 2nd. That all changed on our last annual camping trip when we went to close up our property up north. My overnight stay turned into a 3-day hospital stay when my water broke at 7 am, and the ambulance rushed me to the closest hospital, an hour away. Tristan made his grand appearance 4 hours from home at 33 weeks and one day. He was transferred to Helen DeVos Children's Hospital because it was the closest hospital with a NICU. He was on Continuous Positive Airway Pressure (CPAP), but otherwise, he appeared fine. Around 36 weeks (3 weeks old), we lost pulse and pressures in his feet, so they ordered an Echocardiogram, which revealed the scariest truth there was.

Our tiny baby boy had three heart defects: Coarctation of the Aorta, Bicuspid Aortic Valve, and Atrial Septal Defect (more commonly known as ASD).

The scariest part was that he needed emergency surgery the next morning to correct the Coarctation. The recovery from this surgery was super intense. He got a Chylothorax, which caused fats to leak into his chest cavity, collapsing his right lung. After a month, we went back to the NICU, where his respirations were between 90 and 120. They did a slew of tests: a bedside scope, bronchoscope, and the last being a heart cath. The tests revealed that Tristan had Pulmonary Hypertension caused by the 8mm ASD, so the next day, he entered the OR for his second heart surgery. They did a rough patch, but left a small 3mm patch in his heart. This recovery was much faster, and it helped his respirations, although they were still high. They were nowhere near as bad, staying between 65 and 80. Tristan's doctors finally agreed a G-tube would be his best bet because all he had for his whole life was a Nasogastric tube, and at this point, all they were waiting for was for him to have a solid eating plan. So, on January 4th, he got his permanent feeding tube. After 108 days in the hospital, Tristan was released to go home on January 10th.

Tristan is now almost nine months old, full of energy, sitting up, rolling over, babbling, and even trying to crawl and, of course, still fighting Congenital Heart Disease. He's currently on continuous feeds to help him gain weight."


Do you know someone with an Abilitee Story, or would you like to share your own? We'd love to hear it! Send us an email at hello@abiliteeadaptivewear.com to get started.

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