Ugh. More hospitals. We just got home from a five-day stint in the joint after my c-section. Then back again for another round starting on Sunday, ending yesterday. This time Elias was the patient, and day one was really scary and horrible.
Last week, the baby had a stuffy nose and was sneezing, but seemed otherwise well until Saturday night when he slept an unprecedented 8 hours. Now, some might think "Yippee! My baby slept through the night!" But this is not the correct reaction. The doctor told me directly that I should not let Elias sleep more than four hours in a row, even at night, because his little body is just way too small to go that long without food or drink. I'm supposed to set a clock and wake him up! But I never have done this, in part because I'm still recovering from the whole surgery/birth experience, and also because Elias usually does wake up on his own, every three hours or so. (More about his incredible reasonableness as a baby in a moment.) So he slept and I slept all night Saturday. When I woke up Sunday morning and realized the time, I was quite worried. I tried to wake him up and feed him, but he was very groggy and out of it. He ate, but more or less in his sleep. Then I recognized some signs of labored breathing. Pretty near immediately Ben and I were on the phone to nurse on call and set up to see a non-ER doctor.
That visit revealed that he had a fever of 100.6, which initially I thought was no big deal– not all that high or serious. But it quickly became clear that was NOT the case. The doctor at this office got on the phone to our regular pediatrician, who soon was on the phone with me. He said that we needed to take Elias to the ER and that he would need a lot of tests. He also said that it was possible that they would need to admit him to the hospital for a few days to make sure he was okay. "We have to take fever in newborns very seriously," our pediatrician said. "We can't take any chances with it at all." Okay, I said, of course we wouldn't take chances. But at the same time part of me was thinking, "isn't this a little over the top? I mean, it's just a cold!"
Things got worse after we arrived at the ER and went through the usual rigmarole. His fever there was well over 101 by then and everyone was very concerned. Two doctors came in a broke the news to us that Elias would need blood drawn, a urinary catheter to get a clean sample of urine, an IV placed, a nasal swab, and then the coup de gras– a spinal tap. I swear that when they said he would need a spinal tap, tears shot horizontally out of my eyes at once. "But WHY??" I asked, crying despite myself. "Are you looking for meningitis? Why do you think it's meningitis?" They explained that they were indeed looking for meningitis, and that in a newborn they just have to search everything to find out the source of the infection. They said, as gently as possible, that if they missed something he could die. And so they couldn't risk missing anything whatsoever. "But we're really good at drawing spinal fluid– it won't be that bad. We do this all the time," they said to reassure me. But still, I was not reassured at all. I just had a needle in my spine nigh unto two weeks ago. And I was just recently talking with my mother, who had a spinal tap about 40 years ago (when I was an infant myself) and remembers it still as the single most painful experience of her life.
I stayed in the room for the IV placement and the blood work. But when it was spinal time I left. I bailed! I realized on the one hand that having me standing there and sobbing wouldn't be helpful to anyone, and also I realized that in all honesty I just couldn't bear it. Ben was there, thank god, and so I left the baby to be comforted by him and began what turned into an hour or so of wandering around the Emergency Room and environs. I went outside to make a phone call, but couldn't reach anyone. I came back in and paced up and down the halls. They were lined with glass cases, secured by computer key pads, full of unpleasant medical supplies. Enema bags stand out in my memory, as does this whole row of boxes brimming with what looked to be spare fingers of various sizes. Upon closer examination they were finger splints, but just made of a yucky pinkish rubber, as if that would make them blend in better with the person's real hand. It occurred to me that if you were not Caucasian this would be especially ridiculous.
I kept expecting that the procedure would just have to be done soon. But it went on and on. A lady came and asked me if I was with the baby in room four (I suppose I was still crying intermittently) and got me a chair and some ginger ale. I placed myself outside the door. I could hear, at times, a shrill and piercing scream from Elias. I kept repeating to myself, "He cries when you change his diapers. He cries when you change his diapers." I stared at the glass case in front of me, which held a stunning variety of crutches and canes, sized for Tiny Tim to Shaquille O'Neal, and everyone in between. I wondered whether it would be better after all to just be in there and see what was happening, instead of imagining it. I considered writing a letter to the CIA, to tell them to stop with the waterboarding and whatnot, and just simply take some of those jihadi infants and give them spinal taps. If there were any movement or friend I could betray to make it stop, I would have done so in an instant.
Finally it was all over– when I came into the room, it seemed to me that the whole table was covered with my baby's blood. Although really it was just a few biggish splotches of blood combined with iodine puddles. It seemed that Ben and Elias had both survived. But then the bad news: "We didn't get it," the doctor said grimly. "We tried and tried but we just couldn't get it." I stared at her and gradually understood. You mean– all for naught?? You mean my baby went through this and still you do not have the spinal fluid?? "They'll have to try again up in Peeds." I felt weak. I took the baby and nursed him, and he nursed like one who had been lost in the desert. When they all left the room, I asked Ben sotto voce, "How many times did they try?" He looked stricken and replied, "Six, I think."
The rest of the day is sort of a blur. I waited forever for "transport up to Peeds." Luckily they realized that hiking all over hell and back through halls and tunnels, carrying the baby and the gear, would be a little beyond me only 13 days post-op. So they called for a wheelchair. The young woman who came pushing it, though, after an endless wait, was seemingly in worse shape than I was. As she huffed and puffed pushing me up various hill-like ramps, I considered offering to change places. Then I realized that while pushing me and Elias along (Ben had gone home to get supplies), she was actually EATING. Something crunchy!
Oh dear lord– it was all just too surreal.
We got up to the room, only a few doors down from the one where Isaac spent four days in March (Ben is now the only member of our family who has not recently been an inpatient.) Old home week with the nurses. One resident raised the possibility that maybe… maybe… Elias would not need the spinal tap after all. We clung to that hope for a few hours, along with the hope that for some reason we would be sent home after only one night. (I've learned at last to stop listening to residents. They only confuse me.) But just as Ben was getting ready to head home, they came in to say that they would need to do the spinal after all. Ben steeled himself and carried the baby out, while I did my best to go catatonic in front the most banal possible TV.
A long time later they came back. Ben looked like a broken man. He looked like one returning from combat. I could hardly bear to look at his red and traumatized face. But I asked the critical question: "Did they get it?" He replied, "Yes–after three tries." Then his eyes started tearing up. He handed the baby to me. "He needs you," he said. "He NEEDS you." I took the baby and nursed him, thinking Six plus three equals nine. He had a needle poked into his spine… nine… times today.
I had two dueling sides of my brain. The rational side would say, "Well, better safe than sorry. We don't want him to get a fatal disease for god's sake." And the irrational side would say, "It's just a cold! Why are they torturing my baby!?"
One thing I never understood about meningitis, until a nurse explained it to me on Tuesday: it's not like a certain bacteria or virus, specifically, causes it. It's not like the measles or chicken pox, where in effect you need to be exposed to someone who has it in order to get it. It's different– anything can turn into it by attacking the spine and then the brain. So, in a tiny baby like Elias it could be, say, an ear infection, or strep throat, or really any bug at all. Once I understood this, and later, once I understood that it can be fatal with unreal swiftness, speed counted in hours not days, I understood why they had to do all this to our poor tiny baby. (He's not even due to be born until tomorrow! Tomorrow is his due date, October 13.)
The next morning the preliminary tests were all negative, meaning there was no dread bacteria running amok in his little body, or none that showed up immediately. Later on he got a positive on his nasal swab for a common flu virus called parainfluenza. Stiil, they needed us to stay until all the tests were clean for 48 solid hours. Since the spinal was finally drawn late on Sunday evening, this meant that we really couldn't go home until Wednesday morning. Meanwhile, he improved rapidly. HIs fever came down. He went back to his normal eating and sleeping habits. By Monday afternoon I wasn't worried about him anymore. I could see he was well and fine. The only vestige of his illness that remained, really, was his incredibly yucky slime-filled nose, which at times they sucked out with a special vacuum apparatus. Such a tiny nose– no bigger than your thumbnail– and yet, it would yield a stunning quantity of bloody and green goop.
But in the absence of something REAL to worry about, I had many spare hours to be annoyed by the accommodations. It's no spa and resort at the Cleveland Clinic, although they do try. They are all so nice and well-meaning, but it's an institution that's not built around comfort. I found myself sleeping on a fold-out plastic couch in three defined segments, and on a pronounced slope (head at the high end, at least). My polyester bedding did little to cover the bright blue vinyl surface. The sheets did not fit and within an hour or so would be in a wad in the center of the "bed" under me. The pillows, made of rubber, were inflated with air. The thermostat offered a choice of oven or freezer. The food, beyond detestable. The view, a concrete wall with some gravel and forlorn rain-sodden litter in front of it. The four walls, and the TV, the baby, and me. For three days. I tried to read, but couldn't. No lap top, no internet access. The lone shower down the hall, and the nurses often too busy to watch the baby while I slipped away. And no privacy, no freedom to even sleep at will. It never failed that I would get the baby all quiet and finally in his little cage-like crib, asleep, when someone would come to wake him. There was an endless parade of people in the room at any time of the day or night. Who? Here's a partial list:
-the nurses, to check Elias's IV, add things to it, count and weigh his used diapers, etc.
-the nursing assistants to take his vitals, put a tiny 2-inch blood pressure cuff around his little calf, thermometer in the rectum, strip him cold and naked to be weighed, etc.
-the respiratory therapists, checking to see if he needed to be suctioned
-the housekeeping people collecting trash and swabbing things down
-"room service" as they called themselves rather grandly, coming to bring and later to collect their trays of food-like substitutes
-the doctors, making their rounds separately and each listening to his chest and so on
This added up to even less and less sleep for me. Of course, when they were NOT there, this would be the time that the baby would wake up and need attention. Hence between all of them I came home much more exhausted than I left, and also having developed a sore throat.
But how sweet it is to be home! How wonderful the bedding and the food and the privacy and the freedom to curl up in peace!
The only problem is that last night, Isaac was up incredibly sick. First coughing hard enough that Ben went in to give him a dose of albuterol (his asthma puffer, as needed for cough), then up vomiting all over the place. And after the sheets were all changed and he fell asleep again, up screaming with a terrible earache.
So now what? Does Isaac have a NEW virus to give to the baby? All morning I've been thinking Elias looks flushed, and seems a little warm. But I fear taking his temperature because I know what it will lead to if it's over 100.4. Months ago I could see that on paper this would be a tough fall. You take a preschooler and put him in school for the first time, and he's going to get everything in the book. You add one newborn and mix and this is what you get. I could see it coming, but couldn't really do anything about it. The goal now is just to get through it. I'm nursing that baby like there's no tomorrow, trying to get as many antibodies in his as possible, trying to get that little immune system up and running. In the meantime, join me in hoping that nothing too bad comes along again. And please forgive me if you come over to visit and find that I'm a little bit fascist about making you wash your hands.