Kaylee Lewandowski

Kisses for Kaylee

Our daughter Kaylee Lewandowski was prenatally diagnosed with a rare and life threatening heart defect known as Transposition of the Great Arteries (TGA). TGA occurs when the two main arteries going out of the heart – the pulmonary artery and aorta – are switched in position or “transposed.” Kaylee was also born with a less serious and more common defect known as an Atrial Septal Defect (ASD). In order to correct her TGA, she would need to undergo open heart surgery. Kaylee received the arterial switch surgery, a nine hour procedure, when she was just 7 days old.

While her heart was surgically fixed, a few days later she had an emergency. She turned dusky, had trouble breathing and was sweating profusely. She had to be re-intubated (breathing tube back in) in order to help her breathe. It turned out Kaylee had a life threatening complication called a chylothorax, where the fatty fluid in her body was building up near her lung and chest wall, making it difficult for her to breathe and for her heart to pump. Chylothorax happens when the thoracic duct is damaged during surgery. Kaylee continued to drain large amounts fatty fluid. Eventually, she had to undergo another surgery at 3 weeks old in order to repair her thoracic duct.

After these two major surgeries, Kaylee had chronic lung issues and caught the rhinovirus (common cold) along the way. She was also diagnosed with pulmonary hypertension and her right ventricular pressures in her heart were abnormally high. She went on to have two cardiac catheter (cath) procedures done to see if her lung and heart complications were getting better. The first cath did not show any improvements or benefit of using nitric oxide or oxygen. She continued to have episodes of high heart rates and elevated respiratory rates and would occasionally turn sweaty and blue. Her second cardiac cath showed better results of her right ventricular pressures decreasing. At 10 weeks old, this allowed Kaylee’s team of doctors and nurses to try extubating her (removing breathing tube) again. This came after being intubated for 5 weeks straight and a total of 8 weeks all together.

Kaylee impressed everyone by showing them that she was able to breathe on her own with some assistance of a nasal cannula. She does receive a special low fat formula via nasogastric (NG) tube due to her chylothorax. We are pleased to see her making progress. However, she still needs to overcome her pulmonary hypertension, strengthen her lungs, and decrease the ventricular pressures in her heart.

In spite of the many struggles, we remain hopeful that things will continue to improve with time and patience. In order to take care of Kaylee, Julianne, had to resign from her job. While Kaylee has insurance, it will not cover all of her medical expenses fully. This includes Kaylee’s surgeries, continued hospital stay, follow up appointments, and medications.

To help with the financial burden of Kaylee’s uninsured expenses, a fundraising campaign in her honor has been established with Help Hope Live, a trusted nonprofit organization that has been providing community-based fundraising guidance to patients and their families for 40 years. All donations are tax deductible, are held by Help Hope Live in the North-Central Catastrophic Illness Fund, and are administered by Help Hope Live for medical-related expenses only. Please consider a contribution.

To make a tax-deductible donation to this fundraising campaign, click on the GIVE button. And please share Kaylee’s page on your social media platforms. Every donation helps.

On behalf of Kaylee, ourselves and our families, thank you for your kindness, support, generosity and prayers.