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.

Tube free (for a little while)

Tube free (for a little while)
Originally uploaded by andreas.lehnert

Max pulled out his ng tube this morning, giving me an opportunity to take plenty of tube-free pictures. Of course, we immediately worked to reinsert the tube, so Max didn't get to enjoy his freedom for very long. Max had kept this tube in about two weeks, so we switched nostrils.

Max won't be rid of the tube for good until he starts taking a significant amount of food by mouth. He gets about 700 ccs of milk or formula per day. Today, he managed to get down 19 ccs by mouth, although we were quite happy because this is a lot more than he usually takes over a weekend.

How to get a tube-fed baby to take a bottle

Actually, we don't know how to get Max, who has been exclusively fed by an ng tube, to take a bottle routinely. Earlier this week I had a giddy feeling that Max was doing so well with his bottle feedings--thanks to the secrets of the baby whisperer--that he might forgo the pump completely during the day. But as the week wore on, D. ("the baby whisperer") found it harder and harder to get Max to take a bottle. Carolyn had a long conversation with D. regarding oral aversion and feeding problems, the upshot of which was D.'s feeling that she had been pushing Max too hard and probably he was getting grumpy whenever the bottle came into view. We all scaled back our expectations and went back to the standard three PO attempts per day. ("PO" is medical jargon for "by mouth"). So the bad news is that I've had to scale back my vision of Max just bursting out of his cocoon to turn into a butterfly in a month. But the good news is that, with more realistic goals, Max is doing extremely well.

In other news, Max and Carolyn went to visit his pediatrician. The big downer is that the office had lost Max's chart. Experiences like this are what lead reasonable people to conclude that simple efficiency improvements ("like we have at my office") could save $2 trillion per year in medical expenses. But, really, who hasn't lost the chart (or equivalent) at their job from time to time? The main consequence was that, when the pediatricians weighed Max (14 pounds 15 ounces) they didn't know how much weight he had gained.

Otherwise, Max's legs seemed tight and muscular. My theory is that he has figured out how to switch is muscles on and off, but hasn't figured out how to achieve states between tense and relaxed. His range of motion doesn't seem impeded.

While at the peds, Max was, in Carolyn's words, "bright and sparkly". He showed off a new trick: grabbing a stuffed animal resting on his chest while lying on his back. Max did a lot of smiling and was very calm and patient while he was being discussed. When discussing how to watch for signs of personality changes induced by increased intracranial pressure stemming from his hydrocephalus, the pediatrician pointed to a smiling Max and said: "He won't be like that".

Thriving at home (so far)

One of the first rules of the NICU we learnt was to take it one day at a time--an injunction to discount any day's highs or lows. I suspect there's a similar rule for the home hospital, but Max has had a string of good days. Maybe we're allowed a small measure of confidence and hope, even as we keep an eye on his hydrocephalus and other evolving threats.

Over the past few days Max's ng tube has become sort of disgusting. One of his favorite tricks is vomiting through his nose and messing up the tape holding the tube in place. This morning, Carolyn and D. got sick of it and pulled the tape off and the tube out. Max got to spend most of the day without an ng tube. This meant that he relied solely on the bottle for feeding--no backup recourse to the pump if he couldn't take all his nutrition by mouth. And he did quite well, taking 30 to 40 ccs by bottle at the three regularly scheduled feedings plus one bonus feeding. Of course, each of these feedings takes close to an hour of patient work, but this is great. Although we're thrilled, we keep in mind the warning we got from HSC speech therapist L., who told us to watch for a sinusoidal pattern in Max's bottle feeding. Max might eat a lot to satisfy his hunger, have a bout of reflux and then go off bottle feeds for a while. However, Max hasn't yet had a bad day with the bottle. All of the credit goes to D., who is amazingly patient and has a deep intuitive connection with babies.

I asked Carolyn to take plenty of pictures of Max without his ng tube. She complied. Here's one of my favorites:


Visiting nurse J. came by in the afternoon to supervise the introduction of a fresh tube, along with a cleaner taping job. She brought a new tube style that has a separate port for medicines, so we no longer have to disconnect the pump to give Max his medicines. In addition, the tube stoppers are more robust and easier to manipulate with one hand.

Nurse J. weighed Max, and found that he had gained six ounces since her last visit on Friday. This is a big increase, but Max was probably a little light when she weighed him last, so we think that he's gaining weight at a healthy pace.

As a visiting nurse, I think that part of J.'s job is to gently remind parents of their duties, as well as to help them run the home hospital. J. pointed out that it really was well past time for Max to get a real tub bath. We didn't jump for joy, but we did it (well, D. did). Among other things, a tub bath means that Max's monitor leads have to be taken off and then replaced. Max seemed to enjoy his full immersion, although not quite as much as he enjoys his sponge baths. Here's a picture. Note the tight grip on D.'s finger:

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.

From January 11

Max pulls on his ND tube
Originally uploaded by andreas.lehnert

Here's a video from the archives. Max is still at Georgetown, in the high-intensity side of the NICU. This video was taken during the period when Max had his NG tube pushed into his duodenum in an attempt to cut down on his reflux-related aspirations. At the time, these aspirations were seriously damaging his lungs' ability to maintain a high blood oxygen concentration.

Max can be seen pulling at his tube; in fact, later that night he would successfully pull it out.

He pulled out his NG tube here at home a couple of nights ago. Fortunately, placing an NG tube is relatively simple matter. Forcing a tube into the duodenum or further (e.g. into the jejunum) is a more serious matter, requiring skilled nurses, an x-ray and a couple of hours.

I may try placing an ng tube into my own stomach just to see what it's like.

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.

Stethoscopes have an "off" switch

Our first full day home with Max went by in kind of a blur. The simple fact of having him home is still a constant surprise and novelty. We were nearly overwhelmed at first by the complicated medication and feeding schedule that the medical team devised to manage his reflux. Max's reflux has really flared up since we got home. At one point, we became convinced that his feeding tube was in the wrong place because when we puffed air through it, we couldn't hear the tell-tale "woosh" through a stethoscope. We stopped his feeds and meds and waited for the home-care expert nurse to come over. She showed us, among many other useful and interesting things, that stethoscopes have an "off" setting. When used properly, we found that, indeed, Max's tube was in the right place.

When I looked at the calendar today I realized Max and Ada were born exactly six months ago. They were born on one of the last warm days of the fall; Max came home on the first warm day of the spring.

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: