I have tried to write this update so many times and keep putting it off. In many ways, it feels more personal than the last and also putting words to what God has done feels impossible. So I will give it my best shot.
If you have not read it, start with Part 1 here.
How has a year flown by? A year of pain and sorrow transformed into a year of celebration and joy. With Nehemiah’s birth, there was so much joy and thanksgiving but there was a background sound of, “he isn’t in the clear.” We knew that babies born with Congenital Pulmonary Airway Malformation but without symptoms still require a lobectomy as the mass could turn into cancer or cause issues when respiratory infections pass around. With a mass the size of a lime on about ⅔’s of his right lung the surgeon at Vanderbilt wanted to perform surgery around 6 months old. The thought of my son losing his lung was a constant sucker punch. So while we celebrated his healthy arrival in joy, I still cried out to God begging for complete healing.
Each night as I fed Nehemiah alone in the dark I would pray, declare, command, and tell God all the obvious things, pouring out my heart to Him. Finally, I would settle on, “but I know no matter what comes, You are good,” and that would bring so much peace. Knowing God’s goodness in the not good times is a sign of life built on solid rock.
So many people continued to contend for a miracle with us, and for that I am eternally grateful!
As Nehemiah grew he began pausing his breathing at the end of feeds. The day he hit 6 weeks old we bought a home and moved in. A couple days later I had an appointment set for him to be seen about it but the day before he paused 5 times within a few minutes and for up to 15 seconds at a time. We were admitted to Children’s for observation and an apnea monitor was set up. No apnea was seen. The doctors called other doctors with more experience with CPAM and they all agreed it seemed like reflux but wanted him to be checked out by his surgeon at Vanderbilt.
To Vanderbilt we went, this time for a CT scan. There was a stillness in me as we tried to make the most of our morning getting gluten-free donuts at Vegan Vees and walking around Centennial Park following baby ducks. Finally, we checked in at Vanderbilt’s Children’s Hospital. The radiologist sat and went through all our options with us and explained they were using a brand new lower radiation machine that is much faster and so he would not need to be sedated. They inserted the IV-which was so heartbreaking and took forever, then they walked us to the CT room where I assumed we would be handing him off but instead they had Robert and I holding Nehemiah’s arms. He had fallen asleep after the pain of the IV but was restless we shushed rocked etc and finally, Robert turned on worship music and I began singing to him. His little body relaxed on the bed and they did the CT super fast.
Then came more waiting. Finally, we sat down with Dr. Pietsch (pronounced peach) and he went over our history then announced, “Well. We don’t see these things go away on their own, but the mass is gone. I can’t see anything on the CT scan except normal lung tissue. Happy belated Mother’s Day!” He went on to say that he wanted radiology to confirm that nothing was showing and they pointed out a small spot where there was some restriction. Dr. Pietsch came back and told us we are all clear and he never wants to see us again-my favorite words any doctor can say!
Our baby boy was healed in a verifiable, doctor confirmed way! Healed in a way only God could have, no medicine or doctor could have restored his lung. God stepped in and restored.
I feel like those three sentences are so small for the weight and beauty they carry.
I would like to say that at that moment we cheered and celebrated, that we had a victory lap of some sort, but that isn’t the case. I imagine that after a months-long intense battle a soldier would be glad the battle is won, but collapse into rest for the first time and finally begin to process what they had been through. There were silent tears of gratitude, joyful texts, and quiet talks as we headed home to tell the kids in person. Then there was the heaviness of knowing others still walking through this-some with stories much more painful. I have walked through seeing the joy of miracles, the pain of not receiving the miracle hoped for-but this was a first. Balancing the joy of the miracle was the weight of pain others were going through. It is a new perspective, a new way of hearing people in their celebration and in their loss.
We were drained. It was a tidal wave of relief and exhaustion.
I am still overwhelmed with thankfulness and amazement when I look at our little (big) boy. I am still in awe of God’s perfect works and goodness. I hold him so close in part because of what we have walked through and in part because our oldest, Chloe is going on to college in just a few fleeting months.
This little boy, so full of joy, laughter, and wonder is a reminder of God’s greatness, mercy, and that His plans are so much greater than anything we had planned.
Thank you for being on this journey with us. Thank you for carrying us in prayer and witnessing this miracle together.