The Wrath of Dad

As you might be able to surmise from the pictures we’ve posted, Frankie has slept through most of his stay in the NICU, thanks in large part to mercifully administered doses of morphine. Anna and I have spent hours every day by his bedside, watching him sleep, always ready with a comforting hand or soothing voice should he wake up, or even show the slightest indication of discomfort. Much of this time was spent reading up on the subject of premature birth and preterm babies, and I’m incredibly reassured by what I’ve learned so far. For example, if I had been born with Frankie’s condition, the care I received would have been radically different. Aside from the obvious benefits of 35 years of medical advancements, including improvements in everything from surgical procedures to diagnostic technologies, there is the more significant development in the basic philosophy guiding the care and treatment of premature newborns. Three decades ago, the dominant approach to neonatal intensive care for premature babies did not include pain management. A number of misguided beliefs supported this now-discredited approach: that premature nervous systems were incapable of sensing pain; that the risks posed by pain-relieving drugs outweighed any potential palliative benefits; that preemies wouldn’t remember any of these painful experiences later in life, even if they suffered though them now. As late as the 1970’s, most surgeries on premature infants were performed without anesthesia; forget about generous doses of morphine during the post-surgery recovery period.* Thankfully, this barbaric approach has been eclipsed by the predominant philosophy of Developmental Care. This approach stresses the comfort and well-being of the child, emotionally as well as physically, during all aspects of the treatment process. Pain management is one of the paramount concerns of nurses and physicians adhering to the Developmental Care approach to the treatment of premature infants.

The Children’s Hospital of Austin NICU at Brackenridge is run according to the Developmental Care approach, more or less. I qualify that statement because the standard of care differs from nurse to nurse. Most of those we’ve encountered have been compassionate, supremely capable, and extraordinarily patient. In addition to the minutiae of each baby’s care – flushing IV lines, administering medications, changing dirty diapers, measuring and recording fluid output, temperatures, and blood pressure, drawing blood for lab work, bottle-feeding the older preemies, and constantly responding to the various alarms triggered by anything from malfunctioning leads to serious bouts of apnea – these nurses have to deal with the demands of doctors and the concerns of worried parents. Jennifer, Jill, Diane, Kay Kay, Mary - these are just a few of the nurses who've taken such excellent care of Frankie over the past dozen days. Our lives are bearable, Anna's and mine, in large part because of their mostly unsung heroics. We wouldn't be able to leave the hospital if we didn't believe Frankie was being cared for with kindness and tenderness. Our NICU nurses have been both caregivers and cheerleaders, simultaneously nurturing his tiny body and our family's strained spirits. They give us confidence and hope. They afford us the luxury of optimism, without which I can't imagine enduring all of this as well as we have so far. We will be grateful to them long after this little adventure is over, and I'm not just saying that because one or more of them might be lurking about.

Then, there's Hazel.** I'll start this out with a series of qualifiers and indimnifications. It might just have been that she caught us on a particularly bad night. Frankie was just coming off of the morphine and, as I found out later, it hadn't even been tapered (doctor's orders, though for what reason I'm still not entirely certain). He was kicking cold turkey, and obviously pissed. This was two nights ago, one day after Frankie had passed his barium test with flying colors (or, more accurately, without), earning the removal of his chest tube and replogle. It was also his second day receiving a constant 1ml/hr of breastmilk through a tube running from his nose to his small intestine (a Naso Jejunum, or NJ tube). He'd been taking the additional nutrients well, but Anna and I were worried that the switch to real food might bring on painful reflux. We wondered if that wasn't the cause of his current discomfort. And "discomfort" is really putting it mildly. From a few minutes after we'd arrived at 8:30 until almost midnite, Frankie writhed and screamed, his heart rate hovering above 180bpm for a good chunk of that time. This was the first time we'd heard him issue even a minor complaint lasting more than a couple of minutes, and each of those had been followed by long stretches of comforting silence. So, most of my complaints about Hazel might best be chalked up to the tribulations of this particular night. But even with that allowance, Hazel didn't exactly endear herself to us.

My first impression of Hazel was positive. She had a grandmotherly quality about her, which I realize in hindsight is a stereotypical characteristic I project onto all of the nurses who look to be older than fifty, along with such attendant capacities as wisdom and nurturing kindness. In Hazel's case, first appearances turned out to be deceiving. Shortly after we arrived, Frankie began acting uncomfortable, a transitional phase that eventually culminated in the fiercest little tantrum we'd yet encountered. I asked about his pain medication.

"Well, it looks like he got some Tylenol this morning. But he's not feeling any pain right now."

As the words leave her mouth, Frankie's back is arched, his arms and legs splayed wide, his skin growing progressively deeper shades of crimson. I looked up at the nurse, then back to Frankie, then back to her. Was she seeing this? I tried to restrain myself. "Well, he just got off morphine yesterday afternoon, so I'm guessing that a dose of Tylenol twelve or fifteen hours ago might not be doing the job."

"Oh no, he only had a shot or two of morphine. He hasn't been 'on' morphine."

I was appalled. She hadn't even read his chart. I corrected her. "Actually, he's been 'on' morphine - two to three shots a day - since the day after his surgery, after he had a negative reaction to fentanyl. I know. I was there when the orders were given, and I've been here every day since. Check his chart."

And she did. "Huh. So he has. Well, maybe he could use some Tylenol."

I was stunned, and couldn't hold back. "Wow, you think?" She walked away in a huff, and Anna and I returned to the more important task of consoling our screaming baby. He got his shot of Tylenol, which after a week of morphine was pretty much as good as doing nothing, or so it seemed to me. You couldn't prove me wrong by Frankie's reaction. He did mellow slightly for a few minutes, during which Anna had to pry herself away for her regularly scheduled breastmilk pumping session. When she returned half an hour later, he was going at it, beet red and screaming as loud as his lungs would let him. His heart rate had been between 180 and 200bpm since a minute or two after Anna had left to pump. The alarm on his heart monitor had been pinging for more than a minute. I called the nurse back over. "We're just trying to figure out what's wrong. He doesn't usually cry like this. In fact, this is the first time he's ever acted like this. We're just worried. Do you think it might be reflux?"

"Yeah, it could be reflux. But you know, he also picks up on your anxiety." She turned to walk away, and my jaw dropped to the floor. I looked at Anna, tears welling up in her eyes, and I seriously thought about letting loose on Hazel. Somehow, I held it together, comforted Anna, and tried to deflect attention away from what had just happened, back onto Frankie. When the nurse returned, I told her I wanted her to call for a doctor. She looked pissed off that we didn't find comfort in her care.

"Fine." She said it just the way you imagine, like a disgruntled four-year-old, stomping off to her room after being bawled out by dad. I wanted to strangle her. A few minutes later, she returned with a doctor. She stood over the young woman's shoulder, eyeing me the entire time. I explained to the doctor that Frankie had been inconsolable for most of the night, and asked if it could be reflux.

"Oh no. Can't be reflux. He's got an NJ tube, not an NG tube. It goes into his intestine, not his stomach. There's nothing in there for him to reflux." I looked back at the nurse, and she averted her eyes, pretending not to have heard.

"Well, he just came off morphine, and the nurse just now decided to give him some Tylenol. Will that help."

"It'll help, but it's not going to do more than take the edge off. He's coming off of morphine, which we stopped because we're worried that it's going to impede his stomach function. It's going to be a little rough, but not too bad. He's mainly upset because of the caffeine."

"The caffeine?" I looked back at the nurse, her eyes still glued to the floor. "Nobody told us anything about caffeine." I knew Frankie had received a caffeine injection after his reaction to the fentanyl, and i knew they'd continued the shots after they started him on morphine, but I assumed they'd discontinued both of those drugs at the same time. Apparently I was wrong.

The doctor explained, "He's on caffeine to prevent apnea." She looked at his chart. "He's been on it since his he reacted to the fentanyl. It's preventive."

The doctor explained that there wasn't much we could do, but that Frankie would calm down as the effects of the caffeine wore off. Even this small bit of knowledge was comforting. I thanked her and she left. Frankie had calmed slightly over the past few minutes, and Anna and I returned our attentions to comforting him. Hazel slunk back to her seat, hopefully as remorseful and humiliated as she should have been. What kind of nurse blames the parents? Doesn't read the chart? Withholds pain medication from a screaming baby? Like I said, she might have caught us on a bad day, but she didn't do anything to make it easier, on Frankie, us, or ultimately, herself. Today we had a meeting with the charge nurse, a wonderfully understanding woman who assured us that she'd deal with the situation and try to minimize Frankie's contact with Hazel. I tried to explain that we were otherwise thrilled with the care he's been receiving, and told her that I felt a little awkward calling out one her nurses, but she assured me that we'd done the right thing. It's our job right now to take care of Frankie, and it's my job to take care of Anna. So, when the Helgas and Hazels of the world place themselves in our path, they're pretty much fair game.

* OK, there should really be some footnotes here. All of this comes from a brief history of neonatal care for preterm babies in Preemies: The Essential Guide for Parents of Premature Babies. I'm borrowing liberally.

**Again, not her real name, but this particular nurse is a throwback to a bygone era, so Hazel seems appropriate.