Phillip Miller and Alexis Guidry celebrated the first birthday of their daughter Olivia Jane in March, and now the couple is planning for Olivia to undergo two surgeries this year.
On June 28 Olivia will have her cleft palate surgery. An open heart surgery should take place later this fall, Guidry said, depending on Olivia’s recovery and overall health.
Olivia’s list of medical complexities includes but is not limited to having a congenitally corrected transposition of great arteries, bilateral cleft palate with cleft lip, ventricular septal defect, horseshoe kidney, Pierre Robin sequence, obstructive apnea, multiple congenital anomalies, a single ventricle, an abnormal brain MRI, asplenia, tricuspid valve atresia, total anomalous pulmonary venous connection, CHARGE syndrome, chronic otitis media and sensorineural hearing loss of both ears.
Miller said they adopted their son Easton a few years ago, and after the couple got engaged they found out they were pregnant with their first baby.
“We found out that our daughter would have many medical issues just a few weeks before she was born,” he said. “We knew at 17 weeks about her cleft lip, but then we learned she had a heart defect and they thought she was missing a kidney.”
Miller, Guidry and Easton moved to St. Charles Parish from Jennings in 2020 after Olivia was born so that they could be closer to the hospital she was in. Olivia underwent her first surgery at just 7 weeks old, and spent 101 days in the NICU before she was able to live at home.
Hurricane Ida has briefly displaced the family, but Guidry said they are back living in their Luling home.
To help offset medical expenses, the family is raising funds through the sale of custom T-shirts. The shirts are available for purchase by visiting www.customink.com, clicking on the “Fundraising” table and searching “Olivia Jane’s Journey.”
There is also an option on the site to donate additional money to the family. The T-shirt sales will end at the beginning of July, but Guidry said she is researching options to open up another shirt order and to offer kids’ shirt sizes.
Guidry said the level of support from people – many of them strangers – in St. Charles Parish has been overwhelming.
“The outpouring of support and love from the community has been one of the things getting us through,” Guidry said. “It’s amazing … it really is. When she was born we had a big support system with our close family and friends, but to see strangers and people that we don’t even know support us is really amazing. When she was born we said she would move mountains.”
For more information on Olivia’s upcoming surgeries and medical journey, follow “Olivia Jane’s Journey – Fearfully & Wonderfully Made” on Facebook.
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