Noah was growing and hitting milestones that typical two year olds master. He was walking and getting into trouble. His speech was of course delayed. He had a few words, mom, dad, sis, bro, that, yes and of course no! We had started using sign language early to aid him in expressing his wants and ideas. We would have a sign language instructor come into our home every Wednesday evening to teach us how to communicate with our boy. What is really amazing about this memory is that even my step father would come to the lessons and learn this new language so he could interact with Noah. Week after week we would get out our book and practice signs. We would quiz each other and sometimes use only signs throughout our homeschool day. Joe will still catch my eye even a decade later and sign something to me . Zoe uses this skill with her babies as they develop their language skills. God has never wasted one lesson we have learned on our adventure with Noah. He has brought deaf friends in and out of our lives. Thinking about them brings a smile, knowing spoken language wasn’t a barrier to our love for them.
It seemed every time the seasons changed Noah’s breathing would become compromised and a quick stint in the hospital was the only thing that would cure it. We were on a first name basis with the nurses, they even started ordering Noah special toys and videos. The older kids adapted and would take turns spending the night with Noah and I in the hospital, while Joe and Mom held down the fort at home.
One year though it wasn’t routine. I took Noah to the pediatrician and as the pulsox kept dropping, we were told to go immediately to the Emergency Room. Thinking this was just another one of our bi-yearly stays, I wasn’t hysterical. We got admitted and went to our usual floor. The nurses greeted us, and took Noah to get the IV inserted. As any parent of a young child knows, this is torture! I hated watching them put him in a papoose and stick him repeatedly. I usually delegated this task to Joe, but on this occasion it was just me. After numerous failed attempts, Noah, the nurses and I were all crying. No one could get a viable vein to hold the stick. They finally took us back to the room and cautiously advised us to try to keep Noah hydrated.
The breathing treatments began in earnest and every four hours the respiratory nurse would comes in and administer the nebulizer, chest poundings and suctioning. This went on for days. Our normal stay was 2/3 days. By day four Noah was restless, bored and still not better. Friends dropped off drinks, food, prayer and clean underwear! Zoe, Marley and Malia were shuttled to swim practices, and co-ops. Their world limped along while my life with Noah in the hospital stood still. I kept asking what we could do to improve Noah’s breathing, the doctor had tried steroids,increased breathing treatments, antibiotics…but Noah’s health was declining.
Finally on day seven, we were at our wits end! We decided we were going to have a meeting with the pediatrician. We were losing patience and disheartened by the lack of improvement with our baby’s health. We agreed that Noah would get transferred to A.I. DuPont. Talk of whether he would go by ambulance or helicopter ensued. As the nurses and doctors started putting arrangements into place, the severity of the situation became apparent.
A decision was made to take Noah by ambulance. We loaded up, I was in the front seat by the driver, a doctor was alongside Noah in the back with an oxygen mask, and a stern face. Mom followed behind, driving a zillion miles an hour trying to keep up!
Joe came home from work and rushed up to A.I. Wanda and Carol took the three older kids for the foreseeable future. They admitted Noah onto the respiratory floor. They again tried to get an IV into Noah since it had been seven days without one. This again was met with cries that ripped my heart out. Mom, Joe and I held hands, bent our heads and prayed that they could find a vein and his pain would stop….it didn’t happen. They made him as comfortable as they could. It was after midnight and everyone was running on fumes. We decided that Joe and Mom would go to my Uncle’s house near the hospital and get some sleep and return in the morning.
I would not leave Noah’s side. Around two o’clock in the morning alarms started going off! Immediately I was pushed aside and a small army of doctors and nurses started working on him. Lung…collapse…ICU…I overheard snippets of talk between the professionals. They looked at me and told me they were moving him to intensive care, his lungs were in danger of collapsing. What? We were just at Kent General. We were supposed to come up here and things would be ok. Is he going to die? No one would answer me. In fact, it was as if I was not even there. I tried to call Joe, nothing…Mom, no answer as well. I was alone and my baby was going to die. I could not breathe. I was frozen with fear. Help my baby, Lord, help!
They whisked Noah down into the intensive care unit where specialists were waiting for him. The first thing they did was insert a central venous catheter into his collar bone. The doctor told me that Noah’s lungs were filling up like a balloon but he could not exhale the air, so if they did not intervene his lungs would collapse. Nothing in this world is worse than coming face to face with your child possibly dying. Then to have to do it alone. My knees were shaking, no one asked my permission, they were doing anything and everything they could to keep our Noah alive. Even writing this years later, my heart races, I have a lump in my throat. Fight or flight is engaged.
They hooked Noah up to a bipap machine that would breathe for him for the next week. He would not be able to eat, drink or talk for the days he was attached to it. Mom and Joe found me downstairs the next morning…I had lived a thousand lives at this point. They stared incredulously at Noah,, who was ‘fine’ when they had left less than a few hours ago. No one would say the obvious, but we all thought it, if they had not transferred Noah yesterday, he would have died. Kent General is a county hospital, they were not capable of handling such complex medical issues. God’s providence in Mom demanding he be transferred saved his life.
When Mom saw Noah, she had an emotional breakdown. This had been going on too many days. She went to the doctor and asked for a Xanax! What she was offered was a coffee and danish.
Our pastor, friends, the kids, family all came to visit. The Berries left a thousand dollars in cash on the threshold of our front door so that Joe could take off work and not worry about finances. I slept either by Noah’s bedside or up in the Ronald McDonald room. Time was meaningless, the outside world no longer existed. It was just endless hours and days of the machine breathing for Noah.
After a week in A.I. (two weeks total) Stacey came for a visit. She asked me how I was really doing? What comes out of my mouth, still holds true to what I believe today….”I wake up each day, believing, truly believing he is going to get better. The bluebirds will sing, the sun will shine. Just like that scene in Cinderella. The one where she is doing endless chores but the birds surround her with their melody and the darkness isn’t so dark anymore.” We were walking around the children’s floor, each corridor had a name, we were turning onto Bluebird Court as I answered her question. Serendipitous?
Noah eventually got released and when we came home that night, the sweetest gift awaited us. The Berries had started a fire in our fireplace, turned on the lights, lit candles and had food waiting. It was like the warmest hug from our Heavenly Father. It was still touch and go those first few days home. Noah was so weak, he kept running a fever and every little cough would send us all into a frenzy.
That Christmas Stacey had given me a little bluebird tchotchke that I still have today. I still pick up every feather I pass. I gave a dove feather to my sister-in-law when her father died. My granddaughters get them in the mail, and I have received dozens of feathers from Joe. I named the blue heron who shows up at our pond each morning, Scout. The call of the geese flying overhead soothes my soul. No matter how hard my journey has been, He has never forgotten me or our family. His faithfulness surrounds me and sustains me. Tender Mercies.