Traveling with small children is intense. So is a neonatal intensive care unit. Allow me to explain.
When I was 7 years old, we made a car trip from Washington, DC, to the San Francisco Bay Area. We were moving. It took three weeks, and we had Younger Brother No. 1, who at the age of 5 months really, really, didn’t like his car seat and let this be known in an intense way. When he would scream too much, we had this baby toy known as a busy box that had colorful things on it that could spin, click, or play music. He didn’t yet have the motor skills to run them himself, but a strategy we learned to stop him from crying was for two people to put the busy box in front of him, and, using both hands, run every toy on the busy box simultaneously, dazzling him and causing him to forget what he was crying about, take a break and suck on his lower lip. We called this “overloading the baby” and it would get five minutes of quiet.
Speaking of quiet, if the baby was asleep, it was an intense quiet that no one was allowed to break. If the baby was asleep, the car kept driving No Matter What, and it didn’t matter how badly you had to go to the bathroom, or how hungry you were, the adults simply Kept Driving.
When Younger Brother No. 2 came along, I had (and still have) this puppet named Wally the Walrus who was the director of puppet shows and puppet games that had to be intensely engaging to keep Brother 1 and Brother 2 and their puppets from screaming or flying uncontrollably (i.e., thrown puppet at the windshield). I could always tell if a game was relying on principles too advanced for a 3-year-old when it took a chaotic turn and Brother No. 2’s dragon started flaming at the walrus. It took a while to teach social skills to Dragon.
Despite being a first-time father, I can say with some confidence that kids are kind of hard to forget about. Even if they’re quiet, you’re really appreciative of that fact and you’re still really aware of them.
Now, for the neo-natal intensive care unit, which I have visited every day for the past four weeks, it is an intense place, but the children don’t really cry that much, which takes a lot of getting used to. Many of the children are in covered incubators that don’t allow a whole lot of sound to get out, or they are using breathing tubes, which don’t allow air to travel past the vocal chords, and so they cannot cry. In the case of our son, he is both in the incubator and has a breathing tube. Some of the children are in open-topped cribs, and a few will make their crying be known. When Gabriel checked in, there was a baby crying with a cry that sounded smaller than a kitten’s meow.
The NICU seems to take up most of the sixth floor of the south tower of Swedish hospital, and it has five or six rooms. There are several specialized nurses working each room, and each nurse gets two or three babies per 12-hour shift, depending on how intense the needs of each baby is. Each room can hold around eight infants whose cribs or incubators are placed in front of a bank of plugs in the wall that can provide oxygen, electricity, data connections, and an assortment of other things that I haven’t figured out. A computer screen sits above the incubator that shows up to four vital signs (heart rate, oxygen saturation, respiration and blood pressure), and another computer screen sits to the left with another three vital signs, all related to different aspects of respiration. I remember 25 years ago the sick bay on Star Trek had data screens like this above the patient’s head.
Then there’s another computer on to which the nurse can log in and enter information about Gabriel. Each baby has a setup like this or similar to it. The computers also have alarms that will go off. The longer you spend there, the more you figure out which alarm means what. There’s the de-saturation alarm, which means that the glowing red light and sensor strapped to your child’s hand or foot has detected that the color of his blood has changed enough to mean that he doesn’t have enough oxygen in his blood. That one happens a lot, and makes you feel like you’re falling behind in the horse-race of recovery. There’s also the auto-cycle alarm, which means that there’s a leak around the breathing tube and now the ventilator automatically revs up from 20-40 breaths per minute to 80 or 90 breaths per minute, making your child’s chest go up and down like he is an excited dog, and then the machine starts complaining. There’s the “baby cold” alarm which has a deep menacing sound but so far only goes off when the nurse moves the temperature probe while turning the baby over. Also, you get a menacing alarm if the humidifier runs out of water, but that’s easy to fix.
In regular baby life, a baby cries, and the parent wonders what’s wrong. In NICU life, an alarm goes off, and a specialized nurse immediately knows which part of the baby is showing trouble. These alarms become the dominant experience in the NICU, and if you sit with your baby for a few hours, you’ll find yourself staring at the vital-signs screens more than at your child. Often, you wish you didn’t know.
Then there’s the moment when a window pops up on your baby’s screen and shows a line graph of some troubling vital signs that require the nurse’s attention. This was pretty stressful because of how often the alert chimes would go off, but then I realized that the computer screens were networked, and the pop-up window was to alert the nurse to a neighboring baby’s needs.
Yes, the neighbors. The neighbor baby and their parents are often about 36 inches away and entitled to privacy. I got in trouble once for reading the name card off of a neighboring baby’s incubator without the parents being there. Neighboring parents also sit by their children. There’s a maximum of two adults you can have next to your child’s incubator, and at least one of them has to be a parent. I don’t really talk a whole lot with the other parents, either while next to the crib or while at the handwashing station (30 seconds, all the way up to the elbows is the rule).
Yesterday, the nearest neighbor baby had a couple of specialists in masks and gloves doing something pretty involved that seemed to produce a sizable quantity of bloody gauze. I asked Gabriel’s nurse how much longer the procedure would go, thinking I might wait it out in the lobby, but she didn’t know, so I stayed and tried to retreat into a bubble with a collection of commentaries on the Psalms. The mother sat two feet away from me and watched the procedure intently. That baby’s been there for several days, and I haven’t said anything to the parents yet. This is partly because I know how difficult it is to start a conversation even with someone you like when you’ve been in “crisis mode” too long, but it’s also because I can see from the condition of this baby that she, like Gabriel, is not going anywhere any time soon and we will eventually get to talk.
Maybe we’ll talk when our babies can cry.
This is an excerpt from our journals when Gabriel was in the neonatal intensive care unit.