On March 29 of this year Phillip Miller and Alexis Guidry welcomed their first daughter into the world.
“We adopted our son Easton a few years ago from a not-so-good situation,” Miller said. “After we got engaged we found out we were pregnant with our first baby. We found out that our daughter would have many medical issues just a few weeks before she was born. 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.”
Olivia underwent her first surgery at only 7 weeks old.
“That was for her trach and feeding tube,” Guidry said, adding that Olivia’s medical case is so unique that it has never been seen before by doctors. “She has a vent, feeding tube and a trach.”
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, Guidry and Easton moved to St. Charles Parish from Jennings last year after Olivia was born so that they could be closer to the hospital she was in.
Olivia, who is now 6 months old, spent 101 days in the NICU before she was able to live at home.
“We decided to move to the area while she was still in the NICU,” Miller said. “We moved to Luling.”
Miller, Guidry and Easton all said the move was the very best choice for their family.
“I’m thankful for my new friends I have now at our new house,” Easton said.
Unfortunately, just like many local families, Hurricane Ida has displaced them.
“There was a lot of water damage that caused mold and wind damage,” Miller said. “We can’ live there now, but we will definitely move back once our home is repaired.”
The family is currently bouncing between their families’ homes in Jennings, but said the outpouring 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. “We have befriended by complete strangers who have reached out to offer a helping hand. Coming from a small community where we lived before moving, we feel right at home.”
Alexis graduated from college in December with a degree in elementary education, but has been unable to work because of Olivia’s need for care. The storm has also temporarily impaired Miller’s ability to work. A GoFundMe account – titled “Olivia’s medical care. Rare medical diagnosis” has been set up by the family.
“The love, support and prayers that we have received from this community has been tremendous,” Miller said. “We are truly grateful for the friends we have made and to call St. Charles parish home now.”