On September 26, 2017, Paul & Meggie welcomed their beautiful daughter, Pearl Elizabeth. She weighed 8lbs, 12 oz and 20 inches long. From her birth, Pearl has amazed everyone, including doctors, of her overwhelming strength, grace and tenacity. She was born with VACTERL-H syndrome, which is a very rare genetic disorder that effects her vertebrae, anus, heart, trachea, esophagus, kidneys and more. However Pearl has shown us she WILL overcome it all.
Paul and Megan tried for four years to start a family when God blessed them with their handsome, two and a half year old son, Luke. They were so happy when they found out God had blessed them again with another angel, Pearl. At 20 weeks, Paul and Megan knew they were in for a hard road in front of them when they found out sweet Pearl had hydrocephalus and was not sure if she would survive the pregnancy. But they took each day at a time and did not stop believing and praying for her health and were so excited to meet their sweet baby. Since her birth, she has defied any and all odds. She has had five major surgeries, her first being 9.5 hours long when she was just two days old. A team of four surgeons worked together to insert a feeding tube, attach her disconnected esophagus, close a hole in her trachea and place a reservoir in her brain to aspirate an accumulation of cerebral spinal fluid (CSF) caused by aqueductal stenosis. One week later she had a colostomy. Her third surgery was performed two weeks later and allowed neurosurgeons to place a VP shunt in her brain to encourage the drainage of her additional CSF. Following her shunt surgery she had a tracheotomy done to stabilize her respiratory issues. Once her airway was safe and stable, neurosurgery performed a craniotomy, a procedure used to release the frontal bone of Pearl’s skull to allow her brain to grow.
For the past three months, they have shuffled their lives and Luke’s to stay at Pearl’s bedside. Luke has two wonderful sets of grandparents that shared the responsibility and loved taking care of him, while Paul and Megan stayed close by the hospital at the Ronald McDonald House, which they wouldn’t have had it any other way.
After 105 days in the NICU, they are HOME! They are overjoyed to be together as a family of FOUR in their own home – what a miracle! Pearl's kind and gentle nature and sweet smile has won over everyone she meets which is why there were over 15 doctors and nurses to wish her the best leaving the NICU. Pearl is coming home with very little medications and able to breath on her own with some assistance of the ventilator. She is doing great and truly has come so far showing the world how strong she is. Pearl has the BEST parents in the world, who are her biggest advocates and know her inside and out. Now home, Pearl is assisted with 24/7 nursing to help with her needs. With the three-month stay in NICU, multiple surgeries, monthly medical supplies, 24/7 care from home health nurses, and now weekly doctor visits you can only imagine what this sweet family is dealing with. Both Paul and Megan have not asked or talked about the financial help they could use, but we know anything will help them.
Through all of this, Paul and Meggie have remained such a strong and faithful team trusting God in every step of their “new normal” life. We love their sweet family of four so much, especially our sweet goddaughter Pearl!
Sweet Pearl in her first couple of days meeting the worldDischarge Day!Pearl meeting her brother, Luke
She is clothed with strength and dignity Proverbs 31:25
- Annie Banton
- Mike Rogero
- Joe Palma
- Joe Tringali
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