A home far from home

December 17th, 2021 | Our Families

At just 26 weeks pregnant, Melissa flew from Connecticut to Wisconsin to visit her mom. Two days after arriving in Wisconsin, she was admitted to a rural hospital for preeclampsia. Soon after Melissa was transferred to UnityPoint Health Meriter Hospital in Madison for specialized care. Just twelve days after being admitted, Nora was born weighing 1 lb. 11 oz. and measuring 12 inches long.

Despite being born prematurely; Nora did not have any underlying health issues. But nine days after she was born, a large blood clot was found in the right atrium of her heart. Since Nora was so tiny, open-heart surgery was not an option at the time of discovery. She would need to be stable until she weighed at least 4 pounds before undergoing surgery to remove the clot from her heart. Waiting was risky as the clot could break off at any time and travel to different parts of her body wreaking havoc. Since surgery was the only option, Nora was transferred to American Family Children’s Hospital (AFCH) to await the surgery to remove the clot.

Shortly after being transferred to AFCH, parts of the blood clot in Nora‘s heart broke off and traveled to her brain and lungs, causing a pulmonary embolism and a brain bleed (stroke). Because of the severity of the brain bleed, heart surgery was no longer an option. As a result, Melissa was told they would need to think about palliative care for Nora. After further consultation with the doctors, it was agreed that if Nora’s brain could stay stable without any new bleeds for four weeks on anticoagulants, the surgeon would operate to remove the blood clot in her heart.

After a nine-hour surgery, the clot in Nora‘s heart was successfully removed. Post-surgery, Nora did well. It was discovered that she was having seizures and also that she now had a paralyzed vocal cord. But with a Gastrostomy tube (g-tube) placed for feeding, monitoring, and medication, Nora was sent home on oxygen.

Today, Nora is a happy, smiley, 2.5-year-old-girl who loves Minnie Mouse and has a great sense of humor. She’s also very busy with three different therapies, three times a week. She’s not mobile on her own but with the help of therapy, the hope is that someday she will be able to walk, sit, eat, and speak on her own.

“She may have challenges ahead, but we are so grateful that she’s even here with us. She truly is a miracle child. We lived at the Ronald McDonald House in Madison for five months while Nora was in the hospital and we’re so grateful for everything they provide to families. We aren’t sure what we would’ve done without it since our home was so far away,” said Nora’s mom Melissa.