Thursday, April 22, 2010

One year home

We brought Max home on April 23, 2009. It was his 180th day of life, or exactly six months since he'd been born. I remember inserting a fresh ng tube while we were still in the hospital, nervous at the thought that the next time we did this it would be without a helpful nurse nearby to give encouragement and advice. I also remember snipping Max's ID bracelet off. And then we were home.

Can you see the terror in our eyes?

When Max first came home there were two cribs and an air mattress in his room. At night we would put him in the portable crib; it sat on the ground and had mesh sides so we could clearly see Max, inches away from us while we took turns dozing on the air mattress. In those early days at home Max was still a true hospital baby, not really used to a diurnal cycle, so he was quite active in the deepest, darkest hours of the night. I remember falling asleep at one point very late in the night and waking up a few hours later to find that Max had pulled his nose tube out while the pump was still running. He missed a lot of meals that way. Max recognized that he had been demoted to a deeply inferior hospital environment, but he put up with it patiently.

Tube free (for a little while)
The doctors here are incompetent but I love them anyway

We also had our meetings with Arlington County's excellent early intervention team, and got to know the full complement of therapists and visiting nurses with whom we'd be working. In those days, Max could not hold his head up on his own for more than a second, could not flip over and was nowhere close to being able to sit up without assistance. This all fit with the picture of poor control of his muscles, including, of course, his esophageal sphincter. He could barely tolerate 20 ccs of his special pre-digested formula without vomiting it all up. His feeds had to run at a rate just below 1 cc/minute, yet we had to get 400 to 600 ccs into him every day. He was constantly on the pump at night, during naps and, most cruelly, when he was awake and playful.

Story time
Story time during a feeding

But even early on Max would do unexpected things which, if we let them, would stir a small measure of hope in us.

Bottle work
That bottle was a sign of great things to come

Max's kid cart had torso and head supports that allowed him to sit somewhat upright without flopping around, and an easy attachment for the feeding pump. The kid cart also allowed Max to routinely go outside and see a world without artificial light. The light and the space seemed to stun him in the early days,

Max participates in outdoor play while getting a feed

In August, about the time Max was getting enough control of his torso to be able to sit up (with support) for more than just a few minutes, his reflux began to improve. In fact, this is an understatement. Carolyn and I have never really discussed this, but Max's reflux seemed to simply fade away from one day to the next.

In the bumbo seat
Head control, torso control, and then...esophagus control?

We had become (and remain) deeply superstitious. To speak hope aloud was to be certain of seeing it blighted. But now perhaps the truth can be told. I don't know how or why, but just as we were about to schedule him for surgery to have a permanent g-tube surgically implanted, Max's reflux just ... stopped.

And then, as if finally released from some inner prison we could barely understand, Max began to make lots of progress. Here he is sitting up unaided.

Sitting up
Am I showing off? Maybe I deserve to.

Six months after he came home, Max celebrated his first birthday. He seemed to take it in stride, but Max continued to shy away from loud noises and crowds. We tried to have a good time anyway.

Birthday boy
You too can have a silly hat, if you so desire. No? Perhaps next year.

By Halloween, Max was physically capable of taking part in at least some of the festivities.

Max's Halloween from Codered Summer on Vimeo.

By December, Max seemed to have control of his bottle. Most of his nutrition still came to him by ng tube, but he seemed determined to get enough on his own to end his dependence on the tube.

Holding his own
Did you ever think you'd see this?

On the advice of his therapists, we limited the number of electronic gizmos and toys in his life and introduced him to the oldest toy known to man: the ball. He took to it immediately, raising our hopes of some kind of athletic scholarship down the line.

Is it the shoes?
Is it the shoes?

In mid-February Carolyn and I threw caution to the winds and pulled out Max's ng tube. From then until now he's gotten all the nutrition he's taken in by mouth. Here's a picture of Max with Doris. Without her knowledge of infant care and her deep connection to Max he would never have made the progress he did.

Doris, Max
Doris holds Max shortly after we took the tube out

A week or so after the tube came out, Max started sleeping freely in a regular crib, no longer on his stomach all night (sleeping on his back was bad for his reflux), no longer strapped in at a 30-degree incline with a Tucker sling. Now he could experience a more natural night's sleep. A couple of weeks ago, I saw him sleeping on his back for one of the first times in over a year.

That more or less brings us to today. Max enjoys pushing his mail cart around the neighborhood and terrifying the local cat population. He's not a clear speaker (yet) but he does seem to have word-like sounds for the common people or objects in his life: Nana (Doris), Dada, Mama. A neurologist finally delivered Max's official diagnosis. Interestingly, where a year ago I would have been obsessed by the neuro service's findings, today I shrug them off. Perhaps that's the clearest indicator that he's out from under the shadow of the NICU and into the sunlight of the next part of his life.

Max Henry Lehnert (2/2)
Eighteen months ago today

Today. Watch out world, here I come