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".

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.

Max is babbling a lot more

Max & the rattle
Originally uploaded by andreas.lehnert

Just a couple of weeks ago, while still at the HSC, we thought we heard Max emit his first few coos. Last week, at our first appointment, the pediatrician coaxed a few gurgles out of Max. She then asked us whether we had heard him using consonants. Who knew the fricative was such a developmental milestone?

Over the past few days, Max has been babbling a lot more. I've been listening for consonants but I can't pick them out of the liquid stream-of-consciousness speaking style Max prefers. I'll leave it to the pediatrician to decide later this week. In the pre-dawn darkness today I tried to capture his logorrhea, but Max broke off his monologue to play with the video camera and the rattle. I'll be on the lookout for my next chance. In the meantime, please enjoy Max being alternatively delighted and frightened by his rattle.

His babbling has an edge of tension to it: if you weren't looking at him, you would think that he was crying, or getting ready to. But he does it all with a big smile on his face, and he usually doesn't break into tears, so he must not be in distress.

On a related note, Max is fascinating by people talking. Carolyn and I were chatting in the kitchen and we noticed his head tracking from speaker to speaker, like at a tennis match. We've seized on this interest to also make a big deal out of eating. "You see, Max, mommy and I are using our mouths ... to eat ... and we've got big smiles on our faces so it must be fun". He doesn't seem ready to give up the tube just yet though.

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.