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:

Going without a cannula (again)

Though bathtime is usually in the middle of the night, Max got a midday bath & shampoo today (for reasons that are still not clear to me) from Nurse M. This happened just before I arrived, and I was sorry to have missed it. We haven't seen Max get a bath since one time in early November. They took off Max's cannula today at noon to see how he would tolerate it. Max's nurse today seems to think that he has things too easy and that it is time for him to start experiencing new things ("peel my grapes" she said as she walked by him today). I suspect the cannula move was her idea. During my visit this afternoon from 1:30 - 5:30 p.m., he seemed to be doing well breathing on his own: no bradys, just one apnea (according to the monitor, but I was holding him and I could swear he was actually breathing), and his usual pattern of quick desats into the 80s and occasionally the high 70s. His typical sats were in the mid-90s, and his respiratory rate seemed pretty stable, with little retracting. Our phone call into the NICU tonight continues good news on the cannula-weaning front, as Max's breathing pattern continues to be pretty stable. This is the 4th effort they've made to take him off the cannula, so maybe the 4th time is the charm.

Max spent his time with me mostly sleeping, though he did wake up for some calisthenics and to receive his public (our friend Margaret stopped by for an afternoon visit). He seemed to tolerate the activity pretty well, only turning beet-red a few times. Tonight's head circumference measurement is the same as last night's (37.5 cm) and the nurse reports that his head feels good. I think a head ultrasound is scheduled for sometime this week (the last one was just before Christmas).

Max's new year's resolutions: (1) keep head circumference growth stable and hydrocephalus in check; (2) breathe better, and (3) get the ND tube out and learn to eat from a bottle.