On Little Boys' and Piped Collars and Time
I've spent the last couple nights scouring Etsy for a little boy's romper and piped collar white shirt for Nathaniel for Easter. A couple decades ago I had the luxury of homemade special occasion outfits for my babies and toddlers. Rich's mom and I would sew them.
We lived with Rich's parents for seven years; my first born was three months old when we moved in and I had three more children before we moved out. I spent a lot of time with Grandma - hours every day tending large vegetable and flower gardens, preparing meals, taking walks in the subdivision across the street, sitting side by side at our sewing machines in the guest bedroom.
When Rich crawled in bed and asked what I was doing last night, I said, "Wishing your mom was still here so we could make Nathaniel an Easter outfit together."
"We have a box downstairs of the outfits you two made," he said, "I'll get them out for you tomorrow."
I do not remembered packing away the boys' outfits together in one box, but there they were again. The wool suit Grandma made for Rich’s second son to wear to our wedding. The green corduroy romper and plaid shirt we made for a fall baby’s first birthday. The similar blue cotton romper for son’s summer first birthday.
And the gingham piped collar white shirt, sewn-on bow tie, and overalls for a little boy’s first Easter.
I vividly remember watching Grandma sew on the tiny button and loop, hidden under the collar, so the bow tie would stay in place. Little boys' piped collared shirts take time.
Trying the outfit on Nathaniel caused me to step two decades back in my mothering. When toddler sensory play was something that happened in garden dirt with a kitchen spoon or with scraps of fabric on the sewing room floor rather than something mom pinned on Pinterest.
A lot has changed in parenting world since our now college student fit into this gingham outfit. I am still sorting out exactly what the change is but I have a hunch it has to do with time. Our family, perhaps others, struggle to spend time together in the ways Rich's mom and I spent time together. With our smart phones and texting and social media accounts and Pinterest and Etsy and You Tube and Netflix, do we have the time to sit side by side and make Easter outfits or tend a garden? Do we have time for the children wearing the outfits? It is a question I wrestle with as I compare my parenting of a toddler now to my parenting of a toddler years ago without these distractions.
Rich's mom passed away five years ago today. Nathaniel may or may not wear the blue gingham outfit for Easter next month. The bow tie and his trach are battling for the same space. I am not sure I want to alter the outfit. But I think it will at least hang in Nathaniel's closet this spring and summer season. A reminder of the legacy Grandma Rankin left by spending time with those she loved.
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Nathaniel is back to baseline.
He was discharged from Pediatric Intensive Care Unit to home a week ago Thursday. We reduced respiratory support from every four hours, to every six hours, to every eight hours, to every twelve hours. On Tuesday he no long needed oxygen when awake. By Thursday, he no longer needed oxygen when sleeping. Yesterday he was back to baseline. No oxygen requirement. No breathing treatments. No antibiotics. Little to no suctioning needed each day.
But he is far from back to normal. He lost two pounds in February. His arms seem thin when I help him dress. The jeans that were getting tight in January fit again.
He has little energy. The weather was beautiful this week and though we went outside, he would quickly seek a lap or chair to rest. His most playful day, when he plopped down on his tummy in the dirt and played with trucks, was bittersweet. I enjoyed watching him play in the sunshine. I was constantly aware of the proximity of his trach stoma to the soil and bacteria it holds.
During rounds this morning the team discussed how to adjust and increase feeds around respiratory treatments, coughing, and vomiting. I explained what I do at home. The Fellow commented almost under his breath, "That is a lot of work," and immediately I started to sob. In the middle of the hall, in the middle of rounds, in front of a team of professionals and strangers, I lost it. And I could not pull it back together.
I barely could whisper a response between breaths, "Yes, Nathaniel is a lot of work."
The team paused to give me time. All I could do was cry.
I crawled into bed at five thirty-three Monday morning and put my head on Rich's shoulder. It was the first time we had shared the bed that night. "Just coming to bed?" he asked, "How is he?"
"Yes. He's asleep. Thanks for the notes." I responded. Neither of us said more. For a few moments the only noise in the room was the hum of the air compressor for Nathaniel's heated humidity. I drifted into a light sleep, and Rich's deeper breathing resumed.
From under his pillow the alarm on Rich's cellphone went off. Five forty-five am. The shoulder I was using as a pillow moved, and then was gone.
"What if adopting Nathaniel means you can no longer do the things you enjoy doing as a family or individually?" asked the adoption case manager during our staffing interview.
Rich has just finished explaining his and our older boys' involvement in Boy Scouts of America, including the three backpacking trips to Philmont High Adventure Camp. There were fourteen individuals sitting around the table participating in our interview. They had interviewed other couples before us. They were charged with the task of selecting Nathaniel's forever family. Prior to this question, they had described Nathaniel's medical conditions and the many concerns physicians had for his future. The adoption case manager had explained that it was uncertain if Nathaniel would ever walk. "What if he can't hike and go backpacking with you?" the she pushed Rich a bit more. Nathaniel took his first steps nine months later, just a few months after we finalized his adoption.
Three years ago this morning we met Nathaniel.
He was hospitalized the last week in June for a virus, and one of his physicians came by for a visit. It was primarily a social call. During our conversation we reflected on how little we knew about Nathaniel three years ago. I remember vividly meeting her for the first time in July, 2013. I remember how patiently she explained the airway surgery Nathaniel would need. Though the medical team knew his airway was complex, they anticipated reconstruction. Surgery would be the summer after he turned three - this summer. They anticipated a week in the hospital. They had good reason to hope that he would live tracheostomy free and gain vocalization. Three years ago today we started down a journey of medical complexity that we thought was temporary. Everyone thought it was temporary.
After Nathaniel's Laryngotracheal Separation in February, our Cincinnati ENT told us that Nathaniel's new breathing stoma was big enough that we could stand across the room, throw the trach tube, and get it in. We all laughed. That is an impossibility of course, but we now know that with Nathaniel in the back seat, a six foot one inch lanky Daddy can get the tube in from the front seat.
A few people have asked me why Nathaniel's airway is safer - how did surgery provide that? Before we got home, Rich and I had started discussing what was different from previous accidents. There were multiple things working together.
Nathaniel and I have been lazy all morning. Actually, we've been lazy all week. He was released from the hospital Monday, but it was not until Thursday night that I felt we were on top of his frequent vomiting. Wednesday night was rough. Concerned he was spiraling down toward dehydration again, I messaged our house church (small group at church) and pastors to pray. Slowly over the course of the day, he improved. He felt well enough to join his big brother, Peter, in a hammock outside on Thursday afternoon. Peter will be working in Alaska this summer as a supervisor at a Boy Scout camp. The hammock is newly purchased to take with him. I think the quiet afternoon will be a special memory for both of them.
I have about an hour. I have been wanting to get an update posted to the blog for weeks and have not taken the time. I am going to take this hour and publish whatever comes at the end of it.
Here goes - ignore spelling and other such errors.
Rich and I left Cincinnati knowing airway surgery would change Nathaniel's life. And ours. We were right. We did not know about all the different ways that would happen. In general, everything about living on the edge of life and death is gone. We no longer mentally ask ourselves the thousand safety checks we used to ask: "Are his hands too close to his trach?" or "Who has eyes on Nathaniel?" or "Did he aspirate when he vomited just now?" Life has been taken down a level in intensity. We change trach ties alone now; Nathaniel's three-year old restlessness with this process and grabby hands at his tube will no longer means a potential oxygen deprivation accident. We drive alone with him. We have left him with his older brothers to run to the doughnut shop on Saturday mornings. He plays free with other children and away from our side on the church playground after services. On Thursday, I was in Houston at the conference, Rich was at work, and Nathaniel was home for eleven hours with a nurse who had worked only one shift prior. Quality of life, getting on with life, enjoying life moments.
Another way that life has changed is that Nathaniel has had more respiratory illnesses in the couple months since surgery than he did in the six months prior. We knew this would happen. The freedom to live life means we are in contact with more people and more viruses. He has jumped from one illness to another; most have stayed very minor, however one lingered long enough that it developed into a secondary tracheitis infection. But he has not been hospitalized. Airway surgery removed aspiration. Without aspiration, less pneumonia. Even with the increased viruses, we are using fewer breathing treatments, and Nathaniel requires less suctioning than prior to airway surgery.
I was driving home from grocery store the other night and started to sob. A chest heaving, can not catch your breath sort of sob. Nothing had happened that day or during the shopping trip that warranted tears. As I was leaving the store, Rich and I had exchanged texts. He and Peter were finishing up changing Nathaniel's tracheostomy ties and he was putting Nathaniel to bed. "Will you be home to say goodnight?" The last text from Rich that I read before the convulsive gasps gripped my torso like fingers grip a steering wheel when driving in a torrential rain.
About a month ago, I offered my layman's understanding on the functions of the larynx - it provides a passageway for breathing, it protects the lungs, it contains the vocal cords aiding in sound production, and it helps with eating. I mentioned in that post that having all four functions is not possible for Nathaniel. Tests during our last trip to Cincinnati Children's showed that Nathaniel still aspirates - his airway is unprotected - and that condition is unlikely to change with more time. The news we received in November was more brutal than hearing all four functions of the larynx could not be saved. Because Nathaniel's airway is not protected, it is not in his best interest to restore any larynx function.
Yesterday I visited my own blog to find a link for someone and realized it has been two weeks since I posted last. It takes our family at least a week to recuperate after one of Nathaniel's hospitalizations. Thanksgiving, recuperating, and now preparing for Christmas have all tumbled into each other and filled the empty crevices in each day.
Rich took off a couple hours early one Friday evening so we could go cut down our Christmas tree. With two of our older boys working retail, finding times for this traditional family outing was tricky. We can't remember the year we started going to this tree lot, but we think it has been around twenty-years. It is one of my favorite Christmas moments.
Three years ago tonight another woman held Nathaniel warm and secure in her body sheltered from the encroaching world. I don't know when her labor pains started or who drove her to the hospital. I don't know how many needle sticks it took to start her IV or what type of pain reliever she had. I do know that three years ago tomorrow morning, the doctors delivered a baby boy from her womb and she heard no cry.
The larynx does a number of things for the human body. Its most important role is providing a passageway for breathing. Second and almost equal in importance, the larynx protects. The coordination of nerves, muscles, and cartilage work together to prevent foreign objects, including spit, from entering the lungs. We are all familiar with this process. Something starts to go down "the wrong pipe" and we cough it out. That is your larynx doing its job. Another function of the larynx is to produce sound or our audible voice. A fourth function is to help move food and drink toward our esophagus and stomach. Four things: breathing passageway, protection, sound production, and aid in the eating process. We learned last week that having all four is not an attainable goal for Nathaniel.
I shared the news of Nathaniel aspirating with Rich by sending him the photo of the green gunk on Nathaniel's shirt. I had no words to soften the message. He had only one word back. "Sad."
I left the clinic and got on the elevator. There was a doctor in a white coat already there. Nathaniel burst into tears, started to kick his legs aggressively while turning in the stroller to reach me. This is his often response to seeing anyone in a white coat. Especially moments after an invasive painful test. The doctor moved to the far corner of the elevator away from us. "I am not going to hurt you," he said to Nathaniel. "I won't even look at you." He turned his back to us, his face to the corner, and remained quiet for the ride three floors down. It was what Nathaniel and I needed. It was perceptive and kind on the doctor's part. It was a gift from God. God has continued to meet me moment by moment since yesterday's test.
If fact He prepared me Sunday morning for discouraging news this week.
It was twenty-three years ago this month that Rich and I started watching the cattle report.
I was attending a weekly women's bible study that summer and had shared with the group in July about a mole on Rich's leg. I had nagged and nagged him to go to a doctor to have it removed and checked for cancer. I had made multiple appointments for him. For most of spring he had refused to take the time off work to go and had cancelled the appointments. The women agreed to pray with me that Rich would make an appointment and have the mole looked at. Within a few days of our prayers, Rich made an appointment and had the mole removed. That answer to prayer was a lesson for me on how God can work when I step out of the way.
We were chosen as Nathaniel's adoptive family on June 27, 2013. We spent the month of July learning about his care and preparing to transition him to our home. We teased that we had a one month pregnancy, but in reality it was even shorter because we took a previously scheduled vacation for a week mid July.
We needed EVERYTHING. I remember feeling very overwhelmed when Rich and I walked into Babies R Us early that July. Baby-hood had changed a great deal since we had prepared for our last child fourteen years earlier; even greater changes were noted since we had prepared for our first child twenty-three years earlier. When my other children were little, I had fallen in love with soft baby yellow. I searched for yellow sleepers and yellow receiving blankets. I learned quickly that 21st century baby world is genderized pink and blue.
Want to take a stab at which of my blog posts is the most popular?
Most of my readers would probably guess it to be a post about Nathaniel. His airway emergency in May had over a thousand views within ten hours. Posts about his hospital stay later that same month were equally visited. The post introducing him on adoption day had seven hundred views the first week.
But the most frequented page on my blog is not about Nathaniel. It is... drum roll....
We were driving back from meeting Ellie's mom on Saturday when my phone rang. An unknown number in Wyoming. My heart quickens when I see these things. Our son, Andrew, is a cowboy in Wyoming and two weeks ago was Colt Starting Week Clinic. He was responsible for putting first, second and third rides on colts that were previously only halter broke. Last week he continued to work with those three horses, and seven other equally fresh beasts, day after day by himself ten miles down a dirt road from the next ranch employee. Unknown phone numbers from Wyoming could be a hospital, or a doctor, or his boss. Either could be delivering bad news.
Or it could be Andrew borrowing someone's phone to ask his mom how to order a shirt by the neck size. Breathe.
While working on my masters in Composition and Rhetoric, I spent a semester writing about my experiences with literacy - the stories, people, and moments that shaped my view of reading and writing. The following are experts from that larger work; each story centers on the role my father had in the formation of my literacy practices.
The weekly walks to and from the public library with mom were full of laughter, skipping, and splashing in puddles. In my memory, Concord’s weather was always post-storm, blue-sky sunny with a few lingering puddles for the children’s sake. I have no memories of the library itself, only the route there and back. Our limit of books was determined by what we could carry. Perhaps backpacks and totes were used on the other side of town; rough brown cardboard boxes from the grocery store were our containers of choice. Once home, a small room off the living room served as our own library. My older brother, Ed, and I would carefully place the books on the long built-in bookshelf under the two large wood windows. For hours while Ed was off at kindergarten, I would sit alone on the hardwood floor reading. Oddly, I do not remember if I could actually read.
In 2009 we added a six hundred square foot addition on our home. Rich's mother had just passed away and while neither of us had strong opinions on having our parents live with us, neither of us wanted his father grieving alone. We offered space and assisted living type support in our home. Grandpa accepted.
Working on Grandpa's new room was all our family did that summer. A son moved back from Florida to participate in the construction. A future son-in-law proved his loyalty with long days of concrete work. Our then ten-, fourteen-, fifteen-, and sixteen-year-old sons grew up quickly. We swung sledgehammers, lifted walls, reached for roof trusses, set windows, ran electrical lines and hung drywall. It was a labor of love and changed us. As a family and individuals. The construction project set pieces of Grandpa's heart right again as he was drawn out of his grief and into meaningful work and something bigger than than himself - the power of a family working together.
Three times it happened during Nathaniel's recent hospitalization.
"He's in here with Grandma," said the Emergency Room attending to the resident as they discussed Nathaniel's case outside the partially opened thick sliding glass door.
"Are you hanging out with Grandma, today?" the respiratory therapist asked Nathaniel when she came into his room to administer a treatment.
"Grandma, will you be staying the night instead of Mom?" asked a night nurse new to Nathaniel's case just after shift change.
"I'm Mom," I replied.
Once I added a smack, "A twenty-something Mom or Dad couldn't handle this kid."
Our night nurse arrived at ten last night and we were in bed by 10:25 pm. She left at eight this morning. We crawled out of bed at 7:36 am. Nine hours of sleep. Rich and I both needed it. Nine hours is a good night of sleep for parents of a two year old. It is a very good, rarely experienced night sleep for parents of a trached two year old. It means everything that possibly could have gone wrong went right instead. It means a nurse was on duty. It means the room air compressor, oxygen concentrator, pulse oximetry, heated humidity, and feeding pump - the machines Nathaniel requires at night - worked properly. It means Nathaniel settled back into sleep with a few pats on the bottom or by repositioning himself after waking. It means the night went as we had planned and prayed.
We plan to hibernate on Friday nights weekly.
Dinner: snack packet of humus and pretzels and an ice tea. The cafeteria worker, the same one I have seen countless times in the last week, glanced my way and said, "$7.61."
"You're kidding me," I replied. "Seven dollars and sixty-one cents for that?" I wished I had walked to Panera Bread, spent two dollars more, and gotten the Mediterranean Chicken and Quinoa salad. It is amazing, by the way. Try it.
"Four dollars work?" His expression was flat, but kind as he punched in his employee id.
I woke early Tuesday morning to Nathaniel's suction machine turning on and off. I glanced at the clock. 3:15 am. Rich had woken me when he crawled into bed around 12:40 am. He needed sleep. It was my turn to help the nurse and check on Nathaniel. I have learned over the last two years that there are little indicators of seriousness in how the nurses manage Nathaniel's care. Suctioning by flashlight is evidence of minor intervention. Walking down the hall, I noticed a brighter-than-flashlight glow from the room. The lamp by Nathaniel's crib was on. It announced an increased need for triage by his nurse and myself. Nathaniel had a fever. A very real aspect of our life is that Nathaniel can go from running and playing like normal to Pediatric Intensive Care Unit in a few hours.
John Denver's 1966 ballad comes to mind as I stand in Nathaniel's bedroom door watching his nap time sleep. I have not heard the song since my pubescent days. Once upon a lifetime ago, I was twelve with a mad crush on a college guy named Dave. He played guitar and say Denver into the Lake Erie wind at the end of a dock sticking out from the north shore of Ohio. I was not alone. All the girls gathered there beneath the stars on Friday nights thought Dave was singing just to them. We were naive. We were smitten. We were innocent of the harsh realities of leaving a loved one.
I have enjoyed watching Nathaniel adapt to having his right hand in a cast. He is very creative. Like in the way he decided to look at a book today. He carried his Daniel Tiger book around all day and refused to go outside unless I let him take it along. I am not sure about that cast pillow, but he seemed comfortable and happy in moment. Pretty happy playing with big brother in "bean dirt" earlier this week too.
Hand surgery is behind us. Probably by the time I finish writing and uploading this post, the first three days post surgery will be also be behind us. Three days is the length of time I hear hand surgery pain is the most intense. Managing Nathaniel’s pain has been tricky and some unexpected respiratory issues complicated our post surgery hospital stay. But today I catch myself taking deep breaths and releasing loud exhales of relief. The big day is over. The surgeon cut Nathaniel’s right thumb metacarpal, rotated it one hundred and ten degrees, and pinned it back together. The doctor then sliced a segment of muscle on the pinky side of Nathaniel’s hand and brought it over to support the thumb and increase thumb to finger opposition. Wow. The whole thing amazes me. We will know the final outcome of the surgery in five weeks when Nathaniel’s cast comes off. But for now we rest in the surgeon’s explanation that things went well. I am glad the last four days are behind us.
There were three places I wanted to be on Saturday night: my sister-in-law's surprise fortieth birthday party in Wisconsin, our church's annual fundraiser to support outreach to the marginalized in St. Louis City, and an Eagle Scout ceremony for a young man Rich has encouraged for years.
Instead I spent Saturday evening standing outside a chicken coop with Nathaniel.
Recently one of our older children text late at night and asked if I had time to answer five very specific questions. I did. He called, and I answered the questions quickly. And then I asked, “Are you doing some kind of writing?” Having been his home school teacher, I recognized research mode. He shared that he was writing about what the resurrection of Jesus Christ means to him. The questions were focused on Nathaniel, and I curiously asked if he would share his work with me. And then I asked permission to share it with the world.