HOUSTON - A family temporarily moved to Houston to get high-tech care for their babies' congenital heart defect at Texas Children's Hospital.
Now they're raising money to donate to the hospital that saved her life and help other children diagnosed with it.
Elizabeth Nichols found out the devastating news that something wasn't right with her baby, during her 20-week ultrasound.
That led to an excruciating three more months of trying to find out what was wrong with her unborn baby.
"We bounced around to different hospitals. We had four misdiagnoses and finally landed on the diagnosis of hypoplastic right heart syndrome. Texas Children's is where we received that diagnosis," says Elizabeth, who was living in Midland, Texas at the time.
The Nichols wanted the best possible outcome for their daughter, so they temporarily moved to Houston, for her to be treated at Texas Children's Hospital for the first year of her life
We got to talk to one of the specialists who has helped them along the way. Dr. Nancy Ayres is the Director of Fetal Cardiology at the Texas Children's Hospital Pavilion for Women and she's also with Baylor College of Medicine.
"Sunley had a double inlet left ventricle, meaning both of the valves from the atria and the receiving chambers emptied into a single ventricle," explains Dr. Ayres. "Then both of her great arteries came out of a very small underdeveloped right ventricle, and they were very well developed and so we knew when she came out that she was going to have probably too much circulation through her lungs and that is what happened with her, and she needed what's called pulmonary artery band to stop pulmonary over-circulation."
Sunley was closely monitored for the first six weeks of her life, then it was time for her first open-heart surgery. Two more would follow.
"Every procedure had mixed emotions: very heavy emotions of relief, dread, grief, joy, all the things, and so we're so happy to have her three heart surgeries behind us," explains Elizabeth.
Sunley continues to bounce back after every procedure and is stronger than ever. Now her family started a non-profit to raise funds for research at Texas Children's Hospital. Elizabeth's blog about Sunley, called Lemonade Landing, morphed into lemonade stands, to help children like Sunley.
"We had 32 lemonade stands in 13 states, had a t-shirt drive too and so far, we've raised about $30,000," says Elizabeth. A sour adventure for a sweet cause. Those lemonade stands stretched from Alaska all the way to Georgia with their friends and supporters all over the country who've followed their medical journey.
Elizabeth is concerned Sunley will suffer liver problems later in life because of the way her heart circulates.
Her nonprofit, Write with Light Project raises funds to improve the lives of people struggling with rare conditions. This year, profits will help fund the program at TCH to gather data with the hopes of improving the quality of life for these patients.
"We're also a little bit nervous about what the future holds for her, but that's not something that controls our day-to-day life with her," says Elizabeth. "We're looking forward to a very normal, very full life with Sunley."
Sunley is now 4 years old. While it's been a tough time for her and her family, they continue to be overcome.
"Sunley has had a great outcome, and she's a beautiful little girl," exclaims Dr. Ayres.
"All four of my children have been through a lot of trauma with this, and they have all come out of it more full, more joyous, and just better people, stronger people all around," says Elizabeth.
She says prayers have made a huge difference in their lives.
To learn more about the lemonade stand, visit their website. You can also learn more about the Write with Light Project by clicking here. For more information on the Texas Children's Hospital's heart center, click here. You can also learn more here.