Charlotte Amalie was born on February 28, 2010 at just 23 weeks and 6 days gestation. She weighed 560 grams (1.2 pounds) and measured 11.75 inches.
On March 15, 2010, Charlotte Amalie had a PDA Ligation-- a surgery to close a duct in the heart. She experienced a few different side effects from the PDA (heart failure and fluid in the lungs) but has recovered well. It will take years for Charlotte to recover from the damage done to her lungs from the PDA, the ventilator, and being born too early.
In July 2010, Charlotte had three eye surgeries to help correct a condition called ROP. She had two in her right eye, which experienced the beginning stages of retinal detachment, and one in her left eye, which had Stage III ROP. In November of 2010 she was evaluated as an outpatient and her eyes were deemed in perfect condition.
As of July 2010, she has not experienced any brain bleeds. She had a head CT scan in September 2010 which showed that being born so early did indeed damage her brain structure, but we still don't know (and won't know for awhile) anything regarding her brain function. In March 2011 she had an MRI that showed significant damage to her cerebellum. This stroke was considered "old" and probably occurred during delivery or shortly thereafter. The brain loss will affect her balance and motor skills, but we believe that through therapy she will be able to overcome those challenges.
For the first five months of Charlotte's life, she lived in the Neonatal Intensive Care Unit (NICU) at Chester County Hospital, a level III NICU run by CHOP.
She was transferred to the N/IICU (Neonatal/Infant Intensive Care Unit) at the Children's Hospital of Philadelphia (CHOP) in July of 2010 to have a speech and feeding evaluation.
After three weeks, Miss Charlotte Amalie was transferred back to Chester County Hospital. Her feeding evaluation showed aspiration while swallowing, so a thickened formula has been used for oral feedings.
Charlotte Amalie was discharged from Chester County Hospital on August 25, 2010. Five days later she was re-admitted to CHOP for aspiration pneumonia. Miss Charlotte unfortunately was severely septic and spent another month in the PICU and ICS floors of CHOP.
Before being discharged, Charlotte had a g-tube placed and a nissen fundoplication to prevent another aspiration pneumonia. In March 2011, Charlotte was switched over to a GJ tube and is currently fed via the j-tube. She continues to have significant oral aversion, but receives therapy.
Charlotte was discharged home on September 23, 2010. She spent a total of 208 days in the hospital.
Since coming home, Charlotte is on 1/4 L oxygen, takes feedings through a feeding tube, and has 18 hours a day of nursing care.
So far, we are surviving the 6 hours a day without her nurse. Somehow.
