Zeke's Story

It is with both great joy and great sorrow that we bring to you Zeke's story. We hope that you will learn from it as we have, but more importantly, we hope it will draw you closer to God.
When I was about three months pregnant, I went in for a routine ultrasound and found that the pregnancy had started off as twins, but one of the babies hadn't made it. That was a very difficult experience, but we had a peace about it and knew that it was God's plan. The next month when I went in for the routine ultrasound to determine the sex of the remaining baby, the doctor diagnosed the baby with something called ventricularmegaly--the ventricles in the baby's brain were enlarged. We didn't find out the gender of the baby that day, but I went home and I was very upset. Upset about what had happened to the first baby--and upset about what was going on with the surviving baby. I begin praying and reading the Word and begin reading in Ezekiel. Ezekiel was the name we had decided to use if the baby was a boy. I saw that the name meant "the strength of God" and at that moment I felt like God spoke to me that I was going to have a son and his name would be Ezekiel. I was sent to a specialist who followed the baby's development through the pregnancy. Every time we went to the specialist, it seemed like things were getting worse. The ventricles were getting larger and larger. There were also several brain abnormalities--the most significant being the baby's incredibly small cerebellum. At 25 weeks, the baby was diagnosed with hydrocephalus--but the specialist was still unsure about the other brain abnormalities. He felt like there was a more "global" problem, but it was difficult to see because of all of the fluid on the baby's brain. We were given the option to abort, but we knew this baby was from God and we agreed that even if the baby didn't survive, we wanted God to have that control--not us. None of the doctors were sure if he would make it to birth, and if he did, they weren't sure if he would survive. I clung to any hope I could get from any doctor--but they all said the same thing. A lot of times babies like this have all they need to make it in the womb, but it's difficult to survive outside. We did the only thing we knew to do--we prayed and begin asking others to pray with us.
On December 16th, Ezekiel Thomas Hines was born via C-section. We had friends and family members all over the country and the world praying and fasting for us that day, and Zeke was born and immediately begin living up to his name. He was born breathing on his own and crying.
Zeke spent the first month of his life in the NICN (Neonatal Intensive Care Nursery) at Presbyterian Hospital in Charlotte. On December 20th, he had his first surgery--a shunt placement surgery. After surgery, we began focusing on his feedings and using a Haberman Feeder, we were able to wean him off of the feeding tube and he was able to go home. The day he was released, however, he got very sick and was rushed back to the hospital and put back in the NICN. We found out he had a bladder infection and was diagnosed with bladder reflux. He was released for good a week later.
Zeke was diagnosed with hydrocephalus before birth. After he was born, he was diagnosed with a condition called Lobar Holoprosencephaly. Holoprosencephaly is a condition in which the brain does not develop into two hemispheres. He also had a very small cerebellum--the part of the brain responsible for coordination. He did not have a corpus callosum. As a result, Zeke suffered from developmental delays and many medical conditions.

Our live with Zeke was filled with medical appointments, hospital stays, and therapies, but we wouldn't trade our short time with him for anything. He made amazing gains and was able to smile, roll over, reach for toys, and was working on sitting up and crawling. He was a beautiful little boy with a beautiful smile that won the hearts of all of those that he came into contact with.
On December 11th, 2006, Zeke went into the hospital for cranial reconstructive surgery. Zeke lost a lot of blood during the surgery and his brain endured a lot of swelling. During recovery, his shunt malfunctioned and his brain could handle the swelling. He was left severely brain-damaged and was going downhill fast. We made the difficult decision to remove Zeke from life support and release him into the hands of God. On December 13, 2006--three days before his first birthday--Ezekiel went to be with Jesus. We were able to hold him and he went very quickly.
Zeke touched so many lives in his short year. People I didn't know knew me as Zeke's mommy. His smile was contagious--maybe because we weren't sure we'd ever see his smile. Maybe because his smile offered people hope. I think when people saw Zeke smile, they saw Jesus.
There were so many times I'd wish Zeke was a "typical" child. I was tired. Tired of hospitals. Tired of feeding tubes. Tired of medications. Tired of seeing him suffer. If only he were "typical" then he wouldn't be suffering the way he was. But God convicted me. Typical. Normal. Ordinary. Those weren't words that described Zeke and those weren't words that God had ever had planned for Zeke's life. His life wasn't ordinary--it was extraordinary.
If you have come across Zeke's story and have questions or would like to talk, please feel free to email us by clicking on our profile and sending an email. We are open to talking about Zeke and sharing any knowledge or information we may have.