Nicoles Post – October 25
There’s still a miracle in motion. We will choose the Word of God over what we see.
When Savannah was discharged from Shands Children’s Hospital after birth, she was 3 months old and 6 lbs. She had 6 different diagnoses listed on her discharge papers- diagnoses that I will probably never speak the names of because I refuse to give attention to any work of the enemy. I reserve all glory only for the redeeming Word of Christ. But, to help you understand the severity of this earthly situation in contrast with the completeness of the spiritual reality, I will say scans showed she had only half a heart, with reduced function in that half, positioned on the wrong side of her body, with inappropriately routed arteries, and every organ system shifted out of alignment. Though Miami had followed her all throughout pregnancy, they decided she was too much for them once she was born. As they hesitated to make a plan, Savannah went into cardiogenic shock.
One of the kindest men I’ve ever met in my life called me from Shands Children’s Hospital and introduced himself as director of and head surgeon at the Congenital Heart Clinic, Dr. Mark Bleiweis. He told me if there was ever even a chance to save a human life, he would take it. That’s the Lord’s heart for the sacredness of human life. We knew immediately where we needed to be. Savannah was medically paralyzed in order to have an emergency, external pacemaker routed through an artery in her neck and to be sent by helicopter.
Under Shands’ patient and gentle care, and still in the Lord’s faithful hand, Savannah improved and was able to go through surgery. She had a permanent pacemaker placed. Her failing organs were reversed. If I’m remembering correctly, we were told that properly functioning kidneys have levels in the 40’s. Savannah’s had been in the 400’s. After 37 days she came off a ventilator. After another month she came off respiratory support all together. By Christmas we were spending our days rocking our sweet girl and encouraging her to take bottles. On January 8th 2020 we brought her home.
Savannah has lived most of her life on a heart transplant waiting list. We were advised to live in the hospital as we waited for a heart (a process that can take months, even years) but we knew that as long as Savannah did not need continuous, invasive intervention, home is where she needed to be. We have lived every day knowing that Savannah’s name written in God’s Book of Life supersedes any heart transplant list. The Greek word for salvation is “sozo,” which translates not just saved but made whole and healed. It indicates completeness. Every day for nearly 3 years has been sorting through the threats (lies) from
the enemy (of having our family ripped apart, having to live between cities, and fighting for the life of our girl) and the truth of God’s Word in order to walk out the closest possible thing to the big, beautiful, full life any other child would have. Maybe accommodations had to be made, but we never stopped asking ourselves what Savannah would be otherwise doing at that age and then making it happen.
Justin worked and came home ready to throw on his Dad hat. During the isolation of Covid, I picked up a 1 day a week job to get myself out of the house and see that the world was still turning. Mine felt like it had stopped and I had to do what it would take to let God pull me out of that place so I could be mentally present with my girl. Savannah heard “good morning sweet girl” every single morning as I lifted her out of bed in the comfort of our home and carried her off to play dates and park trips. She started a Bible school program and a Kindergarten readiness class. We fell in love with our homeschool community, something I had never even considered before Savannah taught me the joy of slowing down and seeing the every day miracles we are given and so often miss when we pick up speed. We went to Disney World. Leaving the state was hard because we were only allowed to travel a certain distance from the hospital because we had 6 hours when a heart became available.
But the Lord gave me the idea that if we live 4 hours south of the hospital, why couldn’t we travel 4 hours north of it? We spent my 30th birthday and 4th of July in Charleston, SC and I don’t think Savannah stopped talking about the fireworks the whole way 8 hour way home.
We chose not to tell anyone what we were walking out because we had a responsibility to anchor ourselves in God’s Word before allowing the opinions of others that would inevitably come. Even with just a feeding tube, you would not believe the things we heard or the grace we needed from the Father so that we could also give out. We had to make sure no matter what anyone ever said or did to us, it didn’t shake what we confessed. My very best friend and the only person I ever opened up to told me that she didn’t believe what I believed and she couldn’t stand with me in the way I was asking. Only the Lord could have restored that relationship. She apologized and asked me to disciple her in the steadiness the Lord had caught me with. She’s standing with us in prayer today. Other relationships were lost out of an inability to understand our boundaries or my own struggle with building walls after this first relationship issue. I trust God will restore those too.
Three weeks ago Thursday, we brought Savannah for a pacemaker battery change. A simple procedure that is typically outpatient but that they decided to admit Savannah for so they could keep eyes on her. She did amazing and we were discharged in 2 days, free to go home and continue our life. A week went by and it seemed Savannah was not herself so we took her back in. Tests revealed that in the short time we had been admitted she had picked up 2 different viruses- rhino and noro. She was given some respiratory support to help her overcome those since her body was already recovering from the surgery. She weaned that support quickly and we were scheduled to go home about Wednesday (tomorrow). We remained in-patient only for one of her at home meds to be changed under their supervision. We had to laugh as Savannah started to feel her fiesty self and would look our team dead in the eye and say, “go away doctor.” Justin went home Sunday night knowing that all was well. I stayed with Savannah in the hospital and even slept in her bed with her, nose to nose, telling her we were going home soon and to stay patient.
Monday morning we woke up early. Savannah was quite bold about needing her diaper changed and told our nurse matter of factly. At home she doesn’t wear diapers and has not been thrilled to be in them here. After that she fell back asleep and we ran her feeding pump as we usually do. Somewhere around 10 am Savannah’s heart monitors started beeping, which I was so used to because she’d been yanking them off for days in little fits of frustration. I put them all back as the nurses had showed me and then when our nurse came back in the room I asked her just to double check them. In the second I asked I looked at Savannah and noticed that I didn’t see her breath moving. Our nurse dove for her and before I knew it the code bell was ringing from our room and I was being escorted out by a team of probably at least 12 people. The last thing I saw was someone starting CPR on Savannah’s tiny body and the last thing I heard was a friend on the floor grabbing my hands and drowning out everything else in bold intercessory prayer. Savannah is alive but the moment is urgent.
This was not a matter of Savannah’s heart failing. It was determined that she aspirated. We have been shoving a vile enemy off holy ground and he tried to launch a blindside attack through a back door. We are not backing down. This is the moment our faith has prepared us for. In all the moments that we were told not to get our hopes up, God told us dream big and we recount those victories back now to stand for this one.
ARISE, Savannah.
