One year ago this week was the most terrifying and awful time in my life. It was the first week of Redmond’s life outside the womb. I hadn’t gotten to hold my newborn baby. He was hooked to more tubes and wires than I could count. His life hung in the balance. Remembering it is almost more than I can bear, but for the miracles God performed.
March 7, 2017, was the hardest day of them all. I was at The Ronald McDonald House where we spent every night during that time. There was no space in Redmond’s room for us to stay because of all the ECMO equipment and four people watching him at all times. I was getting ready to go to his room for the day and decided to call to check on him. The nurse I spoke with said that he’d had a rough night, but was doing okay at the time. The second I hung up, the phone rang in my hand. It was the hospital. Confused, I answered quickly, thinking it was too fast for her to call me back. It was Redmond’s Neonatal Nurse Practitioner, Sheri. Sheri said that Redmond had developed something called a “tension pneumothorax” overnight and it was interfering with ECMO. Treatment options were very limited and likely to cause damage from which he wouldn’t recover. His medical team was about to meet to discuss the options, and I should get over there quickly to be a part of the meeting.
Shocked and confused, Rick and I scurried to the car. Because of the difficult parking situation at Mott’s Children’s Hospital, he drove me the short distance to the hospital, abandoned the car in the tangle of vehicles waiting in front of the building, wheeled me up to the NICU (still recovering from the C-section I’d had 6 days earlier), and ran back down before our car was towed away. In the hallway in front of Room 38, I prayed prayers that felt to me like I was sweating great drops of blood. The surgical team, ECMO team, and neonatal teams stood in a circle while I sat in a chair and listened to them talk.
I was shown an x-ray of Redmond’s chest that had been taken a few minutes before I arrived. Where a straight line should have been, dividing his chest into two mirrored chambers, there was a very clear line that went off to the left. A small air pocket had developed on the right side, pushing everything to the left, causing problems for the ECMO circuit. Typically, they could place a simple chest tube to deflate the air pocket. But Redmond was on blood thinners for ECMO and the chest tube would cause internal and external bleeding that could not be prevented. The chest tube would most likely cause him to bleed to death. Without the chest tube, they couldn’t keep running ECMO, which was keeping him alive. It was a no win situation.
While the medical team talked about what to do, I stared at their shoes and prayed with all my might. I begged God to give them wisdom and creativity, to let them see some other way through this thing. I begged God to spare the life of my son. I thanked God for every moment I had had with my precious boy, and I begged God not to take him away. They were all wearing comfortable shoes. Brightly colored sneakers, Crocs, and Birkenstocks. These were people who were on their feet all day every day. But one man wore a suit and dress shoes. He spoke in a heavy Indian accent, but I understood him well. He was the pediatric surgeon.
“What do we do when we don’t know what to do? We wait.”
They heeded his voice of reason and decided they could reasonably wait six hours before the ECMO interference started causing major problems. They decided to decrease his blood thinners as much as possible to prepare for the chest tube. But they agreed to wait six hours to redo the chest x-ray and see what they had to do.
I stumbled to a couch several feet away from his room and called Rick, then my parents. I called the church office and asked them to stop what they were doing and pray. After a brief discussion, the pastors decided to stop everything and drive 90 miles to sit with us and wait. My mom and sister, who had flown in to be with me during this terrifying ordeal, came up to wait beside us.
I had been very cautious about what I posted on social media. I didn’t want to be overly dramatic or raise unnecessary alarm, but the time had come. I posted a prayer request as simple as I could make it: “Please pray for Redmond this morning. He faced a setback last night. The doctors are giving him until 2:00 to see if it will resolve on it’s own. If it doesn’t, they’ll have to do a very risky procedure to deal with the problem. We’re praying for complete healing of his lungs and heart, and for the doctors to have wisdom and knowledge, creativity and innovation, so that the issue is resolved without adding risk.”
People from all over the world responded to the request. We were stunned by the love and support we received. Prayers went up. The heavens must have shaken from all the hearts here on earth who begged God to intervene. I was terribly aware that God was running the universe and in the grand scheme of things, it might not be in His plan to save Redmond’s life. I submitted to the horrible possibility that God’s purpose might be revealed more deeply through his death than through his healing. “He spared not His own son…” Oh, but I prayed that God would save our precious boy. How my heart ached as I called out to the God I serve and love and submit my life to – PLEASE LET MY BABY LIVE.
We sat in a tight little circle as we waited, praying, trying to find a way to make it through the hours that dragged by. Dread hovered over me. I had lost so many times, I braced myself for the worst loss of them all. I knew well the sharp sting of disappointment, the feeling of the earth crumbling beneath me as everything seemed to crash around me. I still didn’t understand what Down syndrome would mean for our family. That confidence I had once had that somehow, because I was a follower of Christ, I was protected from hardship had been shattered.
At 2:00, the x-ray machine wheeled into Redmond’s crowded room around ECMO equipment, over 20 screens, lines and pumps and the sound of oxygen swirling all around. We waited for the news as the medical team stood around the machine and stared at the x-ray. They pointed and talked, nodded at one another, and slowly disbursed. Sheri, our NNP, walked up to us and smiled. “The pneumothorax is gone.”
What?
“It’s gone. His heart and lungs have realigned and are in the right place again. No chest tube is needed.”
“It’s gone?”
“Yes.”
And then I saw it. Tears of disbelief and joy threatening to spill out of her eyes. Her scientific mind, so accustomed to delivering bad news to parents, overwhelmed with the good news she shared.
It was the closest I ever came to fainting right off the chair the entire time we were there. As relief flooded over me, the sobs I’d been holding back broke loose. Sobs of relief. Sobs that wracked my body as I thanked God over and over again for saying YES. My mind was telling me to pull it together and not be so dramatic, but my body had other things to do. I don’t remember anyone else’s response. I don’t remember if anyone hugged me. I just remember asking Sheri if she’d ever seen anything like that before.
She replied, “I’ve been working in the NICU since 1995 and I’ve never seen anything like this before. What just happened is an undeniable miracle.”
I updated Facebook: “We have our miracle today! The nurse practitioner just told us that in 22 years of working here, she has never seen what happened today. In six hours, his body realigned and the risky procedure will not need to be done. We are so grateful for all your prayers, and to our great God for healing him. We also received good news that his heart is healing. I’m crying tears of JOY. He’s able to continue ECMO, which we pray will allow his heart and lungs to fully heal.”
We spent the rest of the day in grateful celebration and praise. What began as the worst day of my life turned out to be the best. Death was defeated and our son was saved. God whispered healing words into my heart.
Triumphant and at peace, we slept soundly that night and awoke refreshed and happy. When we arrived back at the NICU the next morning, Sheri approached us with a worried expression.
“It looks like the pneumothorax is back.”
We stared at her in shock. Would God really do that? Would He really answer our prayers, only to take it away again? She explained that the folks in radiology were reading the x-ray and would let us know for sure in a few minutes. Those minutes were long as we waited and I struggled to comprehend the possibility.
I don’t know how long we waited, but when Sheri came back she was smiling. It was not back.
Radiology just had a lot better screens than they did and could see the picture much more clearly.
Redmond was fine. That was the day I decided that the NICU was a place full of wildly different reports, depending on who you spoke with, and I did my best from that point forward to hold my emotions in check and wait to see what the outcome would be. That decision got me through the next month without losing my mind.
Before the day of the pneumothorax, Redmond was a touchy baby. When they moved him every four hours, changing his diaper and caring for the outside of his body, alarms went off and levels had to be adjusted. After that day, he started tolerating movement. Alarms went off less often. His body began responding to ECMO and within a few days he was able to come off it completely. A month later, he was able to leave the NICU.
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A year later, Redmond is growing and thriving. He’s happy and healthy. When I look at him, I see our fancy miracle. His siblings are everyday, ordinary miracles. They are miracles of health and wholeness in a world of sick and broken, miracles we both wondered if we’d ever get to see.
Redmond is a miracle because he came so close to death and was saved. He’s a miracle because it took so many tubes and machines and medications to help him at the start of his life, and today he doesn’t take anything but vitamins.
We are adjusting to our new normal, remembering how hard our lives were just one year ago, marveling at how we now get to be together as a family and how his heart and lungs function beautifully. We are recovering from the time of intense fear and pressure. And we are full of praise to God for the way He has lavished us with miracles and joy.