Six.

We are celebrating Nathaniel’s sixth birthday this weekend. I’ve probably said it about each year, but it is unbelievable that he’s six. When you parent and love a child who has bore labels like “prognosis: poor,” “failure to thrive,” and “unadoptable,” every year is a milestone. When that child has survived multiple episodes of sepsis, respiratory failure, accidental trach decanulation, aspiration pneumonia, medical formula intolerance, and dehydration, every birthday is significant.

"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.

It was during the second session of developmental language group that I realized another layer of complexity because of Nathaniel's inability to produce any audible noise with this vocal cords.

He can not scream to protect himself from others or get help.

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.

Nathaniel was discharged from Cincinnati Children's on Saturday, February 13. During our visit to Cincinnati last September for the tonsillectomy, we became friends with the crews at the Blue Ash Fire Department. They offered to provide a few dinners for us this trip. A delicious steak dinner, and teddy bear for Nathaniel, was delivered to our hotel Saturday night to celebrate both Valentine's Day and Nathaniel's successful surgery.

Nathaniel has improved by leaps and bounds since the third day post surgery. He's playing with trucks, working on language, and roaming the halls pushing and pulling a wagon. Opps! It is not so quiet around here anymore. We're even back to taking hospital selfies. (Boy, do I have a lot of hospital selfies with this kid.) Tomorrow morning early (6:30) the doctors will change his tracheostomy tube for the first time. If you happen to be a Saturday morning early riser - pray for us. Rich and I both need to be present to learn new care. We will see the incision and new stoma for the first time. We have been through many surgeries as parents; it never gets easy to see a fresh surgical wound on a small child. Afterwards Rich and I will each demonstrate our ability to care for the stoma and change his trach tube. If we do this tomorrow, Nathaniel will be discharge. The discharge is two days earlier than doctors told us to anticipate - a sign of how quickly he has recovered in the last couple days.

There have been a few post surgery issues to cope with that have made recovery not fun. No complications, just not fun. Nathaniel's IV needed restarted; I have decided though I strong description, 'hate' is how I feel about the word occluded when it flashes from an IV machine. Nathaniel has also had some difficulty with voiding and has needed multiple catheterizations. Hopefully these minor issues will continue to improve. 

We learned last week that our friend, Maverick, was traveling to Cincinnati and having surgery this week too. Maverick and Nathaniel were featured in a St. Louis Post Dispatch last spring when we met doing trach training for first responders.  Maverick's room is four away from Nathaniel's room, and he came by this morning to share some toys. It was good to see Nathaniel smile during the visit.

We arrived in Cincinnati yesterday afternoon, and Nathaniel had Laryngotracheal Separation surgery today at Cincinnati Children's Hospital.

A friend sent me this photo on Christmas Eve. "Baby Jesus has a trach this year," her text said.

Doll baby Jesus' mother is six-year old Maggie. Maggie's mother is a medic who spends her days training first responders in tracheostomy emergencies.  Maggie's grandmother is a Sunday School director. Maggie's grandfather had a trach. Blend it all together and it is logical that when a baby was needed for the Family Service nativity at church that Maggie's trached baby doll was cast for the leading role.

The baby wrapped in swaddling clothes and lying in the feeding trough had a tracheostomy.