Nina: When I went for my check, just before my due date, I was told I had high blood pressure and my baby had an irregular heartbeat. The midwife advised me to go to hospital.
How did God help you during this time?
God provided the right people at the right time to talk to me because I was fighting at every stage. Previously, I had home births and minimal intervention. Now they were inducing me and doing an emergency C-section.
But looking back, God had prepared me through a friend who said, 'God does not promise to deliver us out of a situation, but he says he will deliver us in that situation'. I clung to that.
How did it feel when they told you Eli's condition was life-limiting?
It wasn't until Eli was born that we knew anything was wrong, but when they told us he had two life-limiting conditions, pontocerebellar hypoplasia and Edward's Syndrome, it just felt surreal. We couldn't take it in.
When the doctor explained it, they said that there was a mistake in Eli's DNA, but we do not believe God makes mistakes. I remember thinking, 'thank you for telling me that, but it is in God's hands'. We knew God had a reason for this.
Tell us about a miracle you saw God do in Eli's life.
The fact he even made it to birth is miraculous. Most babies with only one of these conditions die in the womb. So God helped us understand that this was for his glory. Also, the part of his brain which regulates breathing had not developed, so when they took him off the ventilator and he breathed, the doctors were shocked. They didn't expect that to happen. It was the first of many chances to witness in the NICU and tell staff we believed the Lord commanded Eli's first breath and would command his last. We told them how many people were praying.
The Bible equips us for anything life throws at us. It says, 'In all things God works for the good of those who love him'. (Romans 8:28) The bigger picture is often outside of our comprehension.
During Eli's time in the NICU you saw God working in the staff. Tell us more.
Friends were giving us scriptures and we started to write them on Post-it notes and stick them on Eli's incubator. Doctors and nurses would talk about it and would come to see his incubator, sometimes walking across the hospital specifically to read the scriptures. It made us stronger because it was God's grace and mercy. I can't cope with it because it is just too amazing.
Eli died when he was four weeks old, but four days before that he was discharged from hospital and you got to spend time with him as a family at home. How important was this to you?
It was the most important thing. It was a miracle he was discharged. Initially they couldn't wean his oxygen without his breathing stopping and they thought he would die that day. So, I asked if we could keep him on high flow oxygen until the end of the week and after back-to-back training, oxygen was set up at home, and with the support of two hospices, unbelievably we were transferred home in the NICU ambulance within just two days. They said they had never done that before!
Since then, one of the doctors said that he now knew that there is something higher out there and something was working on our side. We told him who that higher power is!
People will ask how a parent can go through what you did and still remain joyful and hopeful. What would you say to them?
In The Pilgrim's Progress, there is a deep, dark, never-ending pit of despair. I used to pray that Jesus would pull me out quickly when I fell in. It was the most anguished, dark place. At one of our worst times, we met a Christian nurse in NICU. She was excited to meet us and thought it was such a privilege. She told us to look at all the truth we had written on the Post-it notes on Eli's incubator. We started clinging to that truth again and God brought us out of the pit again.
I know you believe that Eli's life was ordained by God, what impact has it had on your family and wider circles?
It has made heaven very close and real. We can look up and go, yes, this is not our home and Eli is home. You couldn't want more for your child. This makes us smile and brings us joy. It was a privilege that God thought we could be Eli's parents. People could see God at work, and he gave us the strength to tell them that it was him helping us. In God's grand scale, it's not about how long your life is, but how powerful it is. That's why we started to call him Mighty Eli because his little life had a mighty impact.
Thank you so much for your honesty and sharing with us, Nina.