The discreet pleasures of the second act

Last week, everything was new. We had to get the nursery ready (finally)! We had to figure out the pump! The monitor! The medicine schedule! We had our first meetings with the pediatrician and the therapy team. Each of those meetings was really intense, with all of us, including Max, totally focused on figuring out the plan. The room was buzzing with the energy everyone brought, and even Max, who knew he was auditioning for the part of Most Interesting Baby Under My Care, put on major performances at each meeting. Throughout it all, Carolyn and I felt a real sense of progress and direction.

This week, the pump, monitor and medicines are just tools in the home hospital. Carolyn met again with the pediatrician and the therapists, as she will every week for the next couple of months. She reports that everyone was flatter, including Max. For example, Max didn't do very well feeding from his bottle when the therapist was watching, despite having had a string of great days. And it feels like Max's care is a little more aimless, with the team more or less keeping the same regimen. Certainly that initial sense of excitement has dissipated, leaving Carolyn and me to face the quotidian reality of Max's second act.

Actually, although the second acts of most plays can be pretty forgettable, I can sort of see what this is going to be like, and it's going to be good. Max will make incremental progress, with some inevitable setbacks, of course. It's unrealistic to expect a constant stream of dramatic changes like the ones Max has gone through over the past couple of weeks. After all, how often can he come home from the hospital? (Answer: just this one time, I sincerely hope.) And while we won't really notice it, as the months go by, Max will mature and overcome some of his challenges.

Max's second act is off to a good start. I drove home tonight to find Max, Felix and Carolyn in the front yard enjoying a late spring evening. And Max isn't picking up new tricks, but he is improving on his old ones. He is now given to full-on belly laughs. He is absolutely delighted to have his mother tickle his feet.

The trick to this new phase is to actually enjoy each day. The past six months in the hospital were a raw torrent of emotion. Now we have to consider the possibility that we might all, as a family, have actual, drama-free, fun. It's enough to live in this moment, and not to think about what the third act might bring.

The home hospital

Since Max came home Carolyn and I have been operating a small-scale low-intensity care facility from our home. We've become so proficient that we're thinking of running a special needs infant day care center as a way of supplementing our income.

All kidding aside, managing Max's care seemed absolutely overwhelming at first, and, although we've started to settle into a routine, it remains a lot of work. However, it's rewarding work: Max loves getting a sponge bath, for example. In addition, as we gain confidence, we're tweaking Max's care based on our own thinking of what he needs. Of course, our first tentative steps away from the care instructions we came home with resulted in Max losing weight--a big deal for recently released babies. But, seriously, who makes any progress in life without a few missteps? We're learning as we go along.

Because Max can only tolerate a tiny amount of food by mouth, we rely on a pump hooked up to his ng tube to deliver almost all of his calories. If he's going to get over his reflux, he's going to have to get big and strong. Here's a picture of the pump:



The big metal pole is just that: a big metal pole to hang stuff from. The pump is the small box about half-way up. It's an infinity orange model enteral feeding pump. Every morning we break out a new plastic food bag to hang from the metal pole. Max gets formula during the day and fortified breast milk at night. This model pump can handle both formula and the thinner breast milk. The pump has a battery pack that we charge at night and comes with a discreet backpack: we can be extremely mobile, a thrilling though somewhat disorienting prospect.

Max gets a variety of medications delivered through his feeding tube. We use regular syringes:



From the bottom to the top: a probiotic solution, erythromycin (an antibiotic with prokinetic properties) and sterile water to flush the drugs out of the feeding line and into his stomach. Max mainly gets drugs to help control his reflux, although he remains on a small dose of aldactazide (a brand-name combination of diuretics) left over from his lung problems in January. The idea is to let him "grow out" of the dose. The dosage of the other drugs will increase with his weight. Here's a picture of Carolyn delivering medicines (I love the expression on Max's face):



Over the course of the day, Max gets 19 separate doses of drugs, vitamins and so on. We find it easier to make a day's worth of medicines all at once and store them in baggies:



To keep all of this straight, Carolyn put together a daily schedule for Max with his feedings (attempts with the bottle, formula, breast milk etc) and drugs. In addition, we try to record notable events, although the definition of "notable" is becoming a little plastic. Here's a picture of a schedule, sitting next to a recipe for Max's formula:



(If you look closely you can see arithmetic in the margins--there's a great deal more long division than I would have thought.)

At night, we hook Max up to his monitor. Thankfully, he left his pulse-ox meter in the hospital, but we do still keep track of his breathing and heart rate. In my opinion, the monitor looks like a Soviet tape-deck, but we're told it's the latest thing in home health care:



The monitor is connected to two leads taped to Max's chest: one measuring his heart rate, and the other measuring his respiration rate. Which is which? You don't want to get them backwards, or the monitor will think that he's taking 170 breaths per minute, but his heart is only 40 beats per minute. There's a handy mnemonic we use: "white on right". Ah-ha, but whose right? (Max's). And who can tell their right from their left in the night? Here is a picture of Max's chest, showing the leads. The leads are sticky, but can't stand up to baby sweat, spit up, etc, so we've added extra tape to hold them in place:



Finally, we keep tabs on Max using a video camera we placed in his room. We had a sound-only pickup in Felix's room that we dubbed "Radio Free Felix". We haven't decided which cable news network the video system best resembles yet.



The monitor has a night-vision feature, showing a grainy black-and-white image in low light. Squinting at the tiny screen always reminds me footage of people watching the Apollo landings back in the 1970s.

We're home!

We made it home! We found Max at HSC this morning ready to leave:



As I was changing Max I noticed something he wouldn't be needing:


Carolyn and I practiced placing a feeding tube up a baby's nose on a practice doll. Then I did it for real. It was certainly interesting. I put the new feeding tube in the other nostril. Carolyn carefully wiped away the accumulated adhesive from the tape that had held the previous one in place:


And then it was time to leave. (Actually, I'm skipping over a lot of steps, but the HSC eventually let us go.) We loaded Max into the car in the HSC parking garage:


Max was very interested in the new sights and sounds during his drive home:


And then we were home:

The excitement builds, and spreads

I've noticed from watching Felix that when children experience strong emotions, including generally positive emotions like happiness or surprise, they often break into tears. My theory is that children lack perspective: their first time down a slide alone might very well be the actual most exciting thing they've done in their whole lives. I think I can relate. Max's imminent arrival--this Thursday!--has set my mind racing through all the unknowns facing us, and, seriously, how can I have the proper perspective?

What kind of feeding technology will he be on? (We only know that they've ordered a different kind of pump than the one we used two nights ago at HSC. You know, the one that required ticklish maintenance every 70 minutes, all night long.) How will we do feeding Max by mouth? How will we monitor his hydrocephalus? His wedge doesn't really fit in his crib--what if we put it in a pack-and-play on the floor? How can we elevate one end of his crib to simulate his hospital bed? And on and on and on.

Felix is obviously picking up on the waves of nervous energy that Carolyn and I are giving off. Today he complained about phantom pains in his legs, feet, and, um, "bum". Could this be a dire childhood illness? When he forgets about it, he walks just fine. And then there are the sudden crying fits. I know how he feels. Tonight, as his bedtime book, he selected I'm a Big Brother.

No doubt if our cat was still alive, she would be acting out too. It's just as well that we don't have to contend with turds left on our pillows on top of everything else.

But of course, Max is the one who has done all of the work so far. I think back to Max's first few days, and his many subsequent brushes with disaster over the past six months. From that perspective, his move home might be just a small step.

Max in his second day of life:

Midday update (Sunday 11/30)

Carolyn and I spent the morning rearranging bedrooms. When Max comes home, he'll move into the bigger room, and we want Felix settled into the smaller room well before then.

Overnight, Max got a suppository at midnight, which allowed him to stool. His belly is soft. His head circumference has remained stable for the past two days.

We're going into the NICU now.