Title.
A Star is Born
Harper was born on May 14, 2008, at Scottsdale Shea Hospital in Arizona. She was taken by C-section at 32 weeks gestation because doctors found on ultrasound that she had what’s called a meconium ileus – her bowel had ruptured in utero and the meconium (poop) had spilled into her abdominal cavity.
At one day old she had surgery to repair her bowel. Since then, she has had four additional surgeries.
Harper remained in the NICU (Neonatal Intensive Care Unit) for four months. What a beautiful and blessed day when she came home to us and her four brothers and sisters!
“The List”
Harper’s liver became damaged in the NICU as a result of TPNs – the IV nutrition they gave her because she could not tolerate breast milk or formula due to her cystic fibrosis. Without TPNs, she would have starved, but its main side effect is liver damage.
Harper’s liver did indeed become damaged but we always held out hope that it would repair itself. In May 2009 she moved from having ‘liver damage’ to being in ‘liver failure,’ and was air-evac’d to Tucson’s University Medical Center, where her transplant surgeon and team are headquartered.
Her liver transplant work-up (a barrage of tests) is complete but she was too sick to come home. On May 26 she was flown back to Phoenix Children’s Hospital, where she remains, trying to regain strength and put on weight for the transplant surgery (at 1 years old she weighs less than 14 pounds).
The PELD score is a national system that ranks how urgently children need a new liver. Harper is ranked at 26 – anything over 16 is critical. She is pretty high up on the list!
Harper was born on May 14, 2008, at Scottsdale Shea Hospital in Arizona. She was taken by C-section at 32 weeks gestation because doctors found on ultrasound that she had what’s called a meconium ileus – her bowel had ruptured in utero and the meconium (poop) had spilled into her abdominal cavity.
At one day old she had surgery to repair her bowel. Since then, she has had four additional surgeries.
Harper remained in the NICU (Neonatal Intensive Care Unit) for four months. What a beautiful and blessed day when she came home to us and her four brothers and sisters!
“The List”
Harper’s liver became damaged in the NICU as a result of TPNs – the IV nutrition they gave her because she could not tolerate breast milk or formula due to her cystic fibrosis. Without TPNs, she would have starved, but its main side effect is liver damage.
Harper’s liver did indeed become damaged but we always held out hope that it would repair itself. In May 2009 she moved from having ‘liver damage’ to being in ‘liver failure,’ and was air-evac’d to Tucson’s University Medical Center, where her transplant surgeon and team are headquartered.
Her liver transplant work-up (a barrage of tests) is complete but she was too sick to come home. On May 26 she was flown back to Phoenix Children’s Hospital, where she remains, trying to regain strength and put on weight for the transplant surgery (at 1 years old she weighs less than 14 pounds).
The PELD score is a national system that ranks how urgently children need a new liver. Harper is ranked at 26 – anything over 16 is critical. She is pretty high up on the list!
