Amount by mouth

Carolyn and are slowly coming to believe that Max has a throwing-up-his-food problem, not a classic feeding disorder, although he exhibits symptoms of both and they are, of course, closely related. Who wants to eat when it just means throwing most of it, painfully? Well, actually, because it is literally the difference between life and death, most of us would find a way to tolerate it. But infants are a bundle of instincts at war with learned behaviors. And Max won't suffer malnutrition if he stops eating because Carolyn and I would grimly man the pump and see that he gets enough food.

The tube itself may inhibit Max's desire to eat and learning about food. The jolly GI, BK, told us about an experiment in which monkeys were tube-fed exclusively from birth. After six months the tube feedings were stopped completely and the monkeys were offered similar food by mouth. How long, BK asked us, did we think it took for the monkeys to establish a normal eating routine? Clearly he was expecting us to guess a few days, and was somewhat taken aback when I guessed that the monkeys never learned to eat normally and, in fact, starved to death. Hey, doc, I'm living in a worst-case scenario kind of world these days. (The real answer was two weeks.)

About a month ago, we started giving Max a taste of solid food at his feedings. And then about two weeks ago, we started grinding up peas, sweet potatoes and the like, mixing them with water and giving them to him by bottle at one or two feedings per day. As I was feeding him some pureed peas today, I noticed that he would more or less hold the bottle while eating, or at least try to return the bottle to his mouth if it slipped out. Where just a month ago he would spurn our attempts to give him a taste of solids, and continued to at best be uninterested in (and, at worst, hostile to) the bottle, he seems to be learning to use it. Slowly, gradually, in barely detectable incremental steps, he's moving to become just a very finicky recovering anorexic, a huge improvement from his earlier militantly anti-food stance.

Max holds his bottle

Every night we pump 660 mls of fortified breast milk into him. He's never broken 200 mls by mouth in a day, so he's still getting the overwhelming majority of his calories through his pump.

But if you examine the attached graph, you can discern a very faint upward trend (trust me, I've run the regressions). The vertical lines are Fridays. During the week, his bottle feeding is managed by D., the baby whisperer. On the weekends, it's just him and us. Notice the pattern of huge drops on Saturday and Sunday. Carolyn and I are trying. And today he took 165 mls from Carolyn and me; we believe this to be a personal best.

Progress bar

Max has been having an incredible run of PO feeds (recall that "PO" is jargon for "by mouth"). The old plan had been to make him a little hungry to motivate him to eat. This led to a prolonged period where Max didn't gain weight. Although he was getting enough nutrition each day, his bottle feedings were so exhausting that he burned more calories than he took in.

The revised plan had us offering Max the bottle three times a day for no more than 20 or 30 minutes. (In contrast to the 120 minute Wagnerian dramas that had prevailed.) Anything he didn't take by bottle we'd make up by pumping more, either during the day or at night. The new thinking was that Max needed to gain weight first, while maintaining bottle feeding as an interesting hobby.

Of course, now we're obsessively tracking Max's daily performance because we have to. The new plan requires us to add up his total intake during the day, subtract this figure from 788 ccs (his totaly required daily intake) and divide by 13.5 hours, the amount of time he's on the continuous nighttime feeds. Here's page from the journal:



Here is a graph showing how much he's taking by bottle (in blue) and how much we have to pump into him (in red) since the new plan went into effect. Note the weekend effect--our friend D. ("the baby whisperer") has an uncanny ability to get Max to take bottles.


I look at this picture and I see an insurmountable mountain of red. (Sort of like my personal finances.) And the GI team and speech therapists are saying that we're coming to the end of the period when we can reasonably keep Max on an ng tube. They're warming us up for a straight g-tube, i.e. a tube through his abdominal wall. Some GI specialists also think that such surgery, because it deranges the normal geometry of the stomach (including the infamous Angle of Hiss), must be accompanied by a Nissen fundoplication. And that is a kind of surgery I consider one step removed from mutilation. I'd like to avoid it if at all possible.

But there's another way of looking at Max's progress in bottle feeding. Is this an exercise in lying to myself with statistics? Or am I being a canny value investor? Hard to say right now, but I look at this picture and I think that Max, who has cheated so many other surgeons, is on track to pull off another flabbergasting performance.

The night shift

I've been taking the night shift this weekend; Carolyn spends the night in the basement while I remain upstairs to keep the home hospital going through the night. In case of emergency I have Carolyn's cell phone number; because the basement is so quiet and isolated from the rest of the house, the telephone really is the only practical way to communicate. So far I haven't broken down and called for help, but it is a three-day weekend.

The night shift at our house poses some unexpected challenges. While I've always had a vague impression of lots of nighttime activity, I haven't had to really grapple with it until now. There's a great deal of arithmetic. Really hard arithmetic.

Here's an example of the kind of story problem I found myself solving last night. Max's pump delivers food at the rate of 43 ccs/hours. He is supposed to get a total dose of 588 ccs and the feed started at 7:30 PM. I was supposed to wake up at 2:00 PM to give him some meds and top up the bag. It's now 4:10 AM and the bag is empty. The pump says that it's delivered 430 ccs. I have a vague sense that it ran out of food around 3:00 AM and has been pumping in air since then. How much more do I need to program the pump to deliver? What about those meds Max was supposed to get at 2:00 AM? Will I remember to delay his next dose two hours so he doesn't get two too close together? Just how guilty should I feel for inflating my son like a basketball? Why didn't I wake up at 2:00?

In short, there's a great deal of division by 43, which is not a natural unit at all. Not to mention fiddling around with the pump in Max's room, which is usually bright and charming, but which is made tenebrous by the extremely late hour.

When Max was in the Georgetown NICU, the nurses encouraged us to have "skin-to-skin" time with him. According to the NICU team, skin-to-skin promoted brain growth and bonding; it may have had benefits for the child too, I don't remember. I'd strip to the waist and they'd hand me Max, clad only in a diaper. We'd sit in a rocking chair, Max held to my chest (and, um, ample tummy). The nurses would only let me take Max out for 20 minutes at a time. But even after such a brief period I would feel totally drugged. There's an ancient part of our brains that is wired to soothe and protect a baby; that primitive cave parent brain would hijack my higher functions completely after just a few minutes of skin-to-skin time. Good-bye seminars, traffic and weather together on the 8s, job evaluations, dinner invitations; hello roasted bison and growling at the dark. Now that we're at home, the cave parent is relegated to taking control only during the night shift; he's there to make sure his son gets everything he needs no matter how tired the modern parent is. The only problem is, the cave parent can't divide by 43.

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.

Considering a normal family life

Felix and the red ball
Originally uploaded by andreas.lehnert

This picture shows a scene that would have been difficult to imagine even a week ago. Carolyn, Max, Felix and I are all playing outside. (Max, interestingly, is totally fascinated by his older brother.)

Here, Max is already hooked up to the pump delivering his nightly feeding. However, the pump can be carried in a discreet backpack and operated on battery power, so we're completely mobile.

Carolyn and I are considering the meaning of a normal family life for the first time since she went on bedrest last summer. We're still cautious, but we are considering that the four of us might ... go to a park ... together. I'm still thinking this through.

We've survived 4-1/2 days!

What's it like running a hospital out of our home? A week ago we would have been paralyzed by the complexity of the equipment, feeding schedule and so on. But we're getting the hang of it.

It certainly feels as if a lot more time has passed since we brought Max home. But it seems that time has not actually slowed down--we're just savoring each second individually, without the soothing balm of routine to make time go by more quickly. Each moment brings a new, and often exciting, incident or challenge.

We are, however, slowly figuring out how everything works. We're making fewer mistakes with the complicated regimen they sent us home with. I'm collecting pictures of the various pieces of technology that we've now mastered so I can put together a guide to the hospital at home.

A couple of nights ago, Max ripped out his ng tube while I was lying next to his crib. I didn't notice for a while (Max actually seemed more comfortable and his monitor didn't go off). But I did eventually catch it, and Carolyn and I successfully reinserted the tube in the deep pre-dawn darkness. Max seemed to take it all in stride.

Carolyn and I took Max to the pediatrician for his first appointment this morning. We brought the pump in its cunning little backpack so he could get a scheduled feed. A little girl in the waiting room commented that "that baby has a band-aid on his nose". He does indeed, and will for the foreseeable future. It was actually a little shocking to see babies without feeding tubes, oxygen and monitors. This was our first public outing with Max; the public reaction wasn't anything I had thought about. There's a breakfast place in the ground floor of the pediatrician's. Carolyn and I dropped by with Max: we had the french toasts, Max had a smiling contest with the waitresses.

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:

Our night in the family apartment

The family apartment's kitchen
Originally uploaded by andreas.lehnert

Carolyn and I spent the night at one of the "family apartments" inside the HSC. These are fully functional apartments--kitchen pictured here--where families can practice giving all the care that the HSC patients will need inside a hospital, where help is just a shout away.

Last night, Max had his food provided by a hospital pump: The pump delivering milk through his tube had to be replenished every hour and 26 minutes. Although the actual process wasn't difficult, there's something about having one's sleep interrupted at the 70 minute mark that is uniquely disturbing. Thankfully, we'll be taking him home with an arrangement that doesn't need such frequent adjustments. It was kind of fun for a one night. After a week of this, I could see myself making more and more mistakes.

In addition, Max was on a full set of monitors. A friend described the monitors this way: When the alarm sounds your baby is either in serious danger, or he moved slightly in his sleep. Last night, Max's alarms went off fairly frequently--I'm sure he found the familiar tones and beeps soothing. Perhaps in time we too will become inured to them.

But really, the thing that interfered most with our sleep last night was Max himself. He was extremely cute throughout the night. He dropped off to sleep around 8:00 PM (before I got to the hospital in fact) and didn't wake up again until 6:30 AM. He seems to be a very active dreamer and was waving his arms and legs around, mewling and smiling frequently in his sleep. (Babies practice facial expressions in their sleep.)