Inertia

Ahhh...July's almost over? Already? Man. I have to get to work.

I go back to school September 7. It will have been nine months since my last class; before Beanie, before the heart scare, before I was a mom.

I will be at the University only two days a week. Beanie will have to be in daycare only two days a week.

I'm not looking forward to it. Yet, I am.

I have work to do. I have a class to teach this semester; and while it's a class I taught before, I need to tweak the curriculum and the course materials. I need to order books, and talk to the secretary about my new office hours. I have to transition back into grad student from stay-at-home-mom.

It's hard.

I'm trying to suck the juice out of every day of the rest of the summer, when it's just Beanie and me, and nothing else matters. I've been really lucky to be able to be home with her for the first seven months of her life, and to only be gone two days a week thereafter.

I need to go work on that syllabus. Excuse me.

Skipping Stages

Beanie wants to stand. She wants to walk. She's not sitting on her own yet, but she doesn't care. She wants to be mobile, not just sit passively and watch the world go by. She's going to grab the world and put it in her mouth!

My mother warns against letting her skip any of the traditional milestones. She needs to crawl before she can walk. She's got rolling down, but hasn't gotten up on her hands and knees yet. When we try to pull her up in a sit, she sticks her legs out straight under her, and pulls up into a stand. Yesterday, she took a couple of steps, hanging on to my fingers for balance.

Have I mentioned she's only 5 and a half months old?

One of the mom bulletin boards I frequent had a thread the other day about "gifted children." People were generally in agreement about not pushing your kids. No flashcards. Let them be kids. Some of them had stories, about themselves or their kids, skipping ahead and getting burned out.

Now, I'm not saying Beanie's a prodigy because she wants to walk. I'm just wondering, what's wrong with blazing your own path? The same board talks about child-led weaning. I'm all for child-led learning.

The plan: answer Beanie's questions as they come, as honestly as possible while being age appropriate. Expose her to the things that her father and I are passionate about. I learned when teaching high school that the teacher's personal passion for a subject goes a long, long way towards getting kids interested. Beanie will go to museums, and concerts, and watch movies that make us think. We'll discuss whatever she wants to disucss afterward. If she's passionate about something, we'll follow her too.

She gets so, so excited when she's standing. It's the easiest way to make her smile these days. I'm all about continuing that feeling.

Potential

Beanie's been really waking up and becoming part of the world lately. She's rolling in a continuous roll in a given direction now, using her rolling to get somewhere. It's pretty impressive, watching her little face as she decides where she's going and works to get there.

This has me thinking about her as a newborn, before she could express much, or do much besides sleep and nurse. I remember waking up and looking at her as a completely different person, something other than my personal remora, at about 6 weeks. That's when she started to smile and make noises, and I could begin to see the little person she was becoming.

This brings me, oddly, to thoughts on the stem cell research debate. My mom sent me a bunch of literature last week that included the relevant (articles on child allergies--Beanie's allergic to the cats) and the not-so (articles on stem cell research, as well as a pamplet containing the Roman Catholic church's stance). I have read none of it as yet.

Several years ago, before I was married or a mom, when I was teaching a intro to philosophy elective at the private high school where I worked. The Biology teacher, the Civics teacher and I were all recruited to have our classes present on the stem cell debate from the perspective of our various disciplines. This is basically what our philosophy class had to say:

Ethics are based on a set of moral beliefs. Moral beliefs are based on values. What a person, group, nation values dictates their morals and ethics. If person A values knowledge slightly more than they value all forms of life, then they're going to have a belief system in which stem cell research is valuable. On the other hand, someone who values all forms of life higher than knowledge is going to consider any act that extinguishes life in favor of knowledge-gathering to be immoral.

Figure our what your values are, then act accordingly. Debate the importance of values; recognize that's what the issue is.

Now that I'm a mother, the values are being reevaluated again. At one point, Beanie was an embryo; the same sort of embryo from which they want to harvest stem cells. If they were to have done this to Beanie-embryo, she would no longer be the Beanie that rolls across the floor. However, the world would never experience this rolling-Bean, and would not know what it's missing.

Embryos are not babies. They are potential babies. The question we need to ask is, are we willing to sacrifice potential for the possibility to help the real? This is not an easy question, but it must be recognized that different people have different answers to it, and that no one comes to them easily.

Beanie's Heart part two

After all the requisite measuring and weighing, our pediatrician sat down with us to explain the Holter report, which she had just gotten herself. She was great, explaining and answering questions, showing us the readout (which was not at all self-explanatory) and being generally gentle and understanding. The upshot was that the extra beats were in fact ventricular, not atrial, which was everyone’s assumption until now. Ventricular ectopic beats are more dangerous. Beanie was having runs of these extra ventricular beats, and not at all at a regular pace anymore. Our pediatrician thought we should see a cardiologist right away. She had the nurse make an appointment for us while we were there in her office. The cardiologist she wanted (or rather, his partner) spends one day a month in a city about 15 minutes from us; normally her office hours are an hour away. Fortunately for us, that one day for the month of February was the very next day. Our pediatrician told us, before we left, what the likely outcome would be, so we could prepare ourselves. Beanie would need medication, and the cardiologist would likely send us to the large teaching hospital an hour away so that she could start the medication while on monitors.

That night, we were left with lots of “what ifs” floating around in our heads. We all were telling each other, “It’s going to be okay,” but everyone was also walking around sad and introspective. Jay was rocking Beanie to sleep that night, singing Tom Waits to her (a habit he had already well established.) He had chosen “Fish and Bird” that night; he favors the songs from “Alice.” When he got to the last verse, however, he got choked up:

And tell me that you will wait for me
Hold me in your arms
I promise we never will part
I'll never sail back to the time
But I'll always pretend that you're mine
I know that we both must part
You can live in my heart

He couldn’t get the word “heart” out.

The next day we packed up and went out to the cardiologist. It was odd; Beanie was only 6 days old, and already she had been all over the western half of the state. She was so, so small compared to the other children and babies at the pediatrician’s office where the cardiologist was seeing patients. She was weighed and measured again, and her oxygen level was also taken. The cardiologist herself came in to see us. She was comfortable, matter-of-fact. She had the exact position that our pediatrician had predicted. The Holter reading was concerning; she wanted some more tests done, and she would call ahead to the PedICU at Baystate to see if they had a bed.

We ended up spending almost 3 hours at the cardiologist’s borrowed office. I nursed Beanie twice in that time. She was still a hungry, demanding newborn. She didn’t know what kinds of decisions were being made about her heart. Now that she was out of my body, they could do an ultrasound of her heart with more clarity. They also did another EKG, at which point Beanie was reaching the limit of her tolerance. I couldn’t hold her in my arms. I put my hands on her and tried to soothe her.

I should say that my mother was very impressed with both our pediatrician and the cardiologist, and that’s saying a lot. My mother is very critical of many doctors, including my grandparents’, and is not afraid to say so. Her faith in them calmed me considerably.

We went home to get some lunch and pack for Baystate. They were expecting us in the late afternoon, and it was an hour’s drive. I didn’t know what to pack; what would we need? The nursing pillow was key; I brought some clothes for Beanie (though she never ended up wearing anything but a t-shirt, hat and sometimes, socks), clothes for us, snacks, and books to read. The Nursing Mother’s Companion for me. I was still shaky in the nursing routine, and wanted to be armed for all contingencies. Mom was coming to the hospital with us, but then turning around to come back to our home. She would be looking after our house and the pets.

We knew how to get to the hospital now, though it wasn’t the Wesson Women’s entrance this time. We went straight up to the fourth floor, which was all children’s hospital. The PedICU had one of those big doors and a phone on the wall, the kind you have to pick up to ask someone to let you in. We went in and they pointed us toward the last room, technically the Intermediate Care Unit, not the Intensive Care Unit. They had a crib waiting for her. I didn’t know what to do with our stuff, or her. She was still in her car seat/infant carrier. There were two other cribs and one bed in the room, and not a lot of space around her crib. There were other parents there, and rocking chairs, and other chairs that looked like giant pink pleather lounge chairs.

A nurse came in, showed us that we could stow our stuff under the crib, and helped us get Beanie settled. She had the head of the crib raised, and made an upside-down U with receiving blankets to hold Beanie in a little nest. They started hooking her up to the monitors: heart, oxygen, blood pressure. We told them the story up until that point, and that we were expecting our cardiologist to meet us there. Once she got there, we would be starting the medicine—propranolol—which was the whole reason for us being there.

Propranolol is a beta blocker. Beanie’s irregular beats appear to be caused by an extra electrical focus. When her heart rate got high for whatever reason (crying, eating, snuggling…) the extra beats would kick in. The Propranolol’s job is to slow down her overall heart rate, so that the extra beats never kick in.

I’m sure we killed time somehow while we waited for the cardiologist. I nursed Beanie, we changed her. A baby across the room had a spinal tap, and we closed the curtains so as not to witness it. His own parents left the room. The other crib held a four-month old; I didn’t know what was wrong with him. He babbled and chattered to himself and no one. His parents left soon after we got there, leaving him with the TV arranged in his line of sight. We chatted with our neighbor on the other side of the curtain, and learned she and her son were not only from our area, but she and her husband both worked at my alma mater, and not only that, but the resident doctor who had taken our story when we first came in was also a grad, and of my class. I knew she looked familiar! Small world.

The cardiologist stopped by. The med wouldn’t be started until an IV was in. The IV took forever. Beanie’s tiny little newborn veins just weren’t prepared for it. When we saw them preparing the IV, Jay just started pacing and tearing up. I jumped in the fray and stroked her head with one hand while letting her suck on the pointer finger on the other hand. It took four tries and three or four different nurses before the IV was finally in. Beanie just sucked vigorously and grunted. No crying.

The first dose of propranolol was given at 8 pm. From then until June, our days would be divided by six hour segments. 2 o’clocks and 8 o’clocks were medicine time. Once she was asleep again we finally left her side to go get some dinner. There were two choices: the hospital cafeteria or the Friendly’s at the entrance.

We opted for the familiar. In our tired, stressed, anxious state it seemed the better option. It was like a fast(er)-food version of the family restaurant. Minimal choices, and order at the counter. I ordered a chicken wrap, and Jay ordered a Buffalo chicken sandwich. We sat down and started making cell phone calls. You can’t use cell phones in an ICU.

Unfortunately, though Jay has had the Buffalo chicken sandwich before, it was served here with blue cheese dressing, standard. When we got our food, and he saw the dressing, he was frustrated (he won’t eat anything white and creamy), but unwilling to make a big deal about it. He was too tired, too punchy. I, however, was not about to let him go without any food. I took the sandwich back to the counter and told them we wanted it without the dressing.

Now, you would expect that a Friendly’s within a hospital, much less the children’s entrance, would be a little…how shall I say it? Kind? Understanding? Not possessing of major bad attitude? Friendly? The woman (girl) at the counter gave me a look like “What’s your problem lady?” My problem? How about my 6-day-old baby hooked up to monitors and an IV upstairs. “Buffalo chicken is always served with bleu cheese,” she snarled. “Not necessarily,” I retorted, and walked away, fuming.

The stress of the entire day and that confrontation had my own heart pumping hard as I returned to my husband, who was still on his cell phone, updating family on the status of our baby girl. We finished our food quickly after his new sandwich arrived, and got out of there.

It turned out that only one of us could sleep by her side, and as the milk-bearer, that had to be me. Jay went down the hall to the “family lounge,” where people proceeded to wake him up by talking loudly in the middle of the night. I hunkered down on one of the pink lounge chairs and slept pretty well, considering. Beanie woke about every two hours to eat. She may have had a good 4-hour stretch at one point. Typical newborn schedule. The nurses gave her her 2 am med.

We could see the next day that the medicine was already working. From an average of 140-150 bpm (beats per minute), and occasional leaps up to 200+ bpm; it went down to an average of 100-120 bpm. Before we left, however, Beanie would have to have another Holter monitor to be sure that the medicine was working.

Breakfast that day, as well as the rest of our meals at Baystate were in the cafeteria. It actually wasn’t all that bad, for a cafeteria. The only time we left her side was to eat, and that was when we made phone calls as well. At one point, when we returned, a woman was sitting in the lounge where Jay had slept the night before, talking on her cell phone, despite the signs posted everywhere. That same righteous indignation that had risen in Friendly’s the night before crested in me again. “You can’t use a cell phone in here,” I told her, and pointed to the sign. I’ve got a baby in there, I thought to myself. How can you disregard the rules like this in a pediatric ICU? I told the nurses at the station after I passed through the doors, but they didn’t seem to think anyone would be able to stop her.

Beanie got her Holter around 1 pm. More wires coming out of my baby, but that wouldn’t stop me from holding her, rocking her, nursing her. The staff was very respectful of our nursing, and would come back later if they wanted vitals or to pick up soiled diapers (they had to count them). I tried to remember to take good care of myself as well. I was a week postpartum, and all this excitement had me bleeding heavily again. I kept refilling my water at the nurses’ station, and one of them found me some Tylenol out of her own personal stash. Mostly I had to keep off my feet, reading or watching the little TV on its suspended arm.

The rest of the day was comparatively quiet. Other children had come and gone in the Intermediate Care Room, and we had come to the realization that Beanie was in better shape than some. Her medicine was working. Other children were there for clearly the second, third, or fourth times. A little girl with a seizure disorder. Another with Crohn’s disease. We were lucky. Beanie would likely grow out of this arrhythmia after a year or so. Some children aren’t so lucky.

The nurses showed us how to give Beanie her medicine with a small syringe. The resident gave us a prescription for more to take home with us. The first pharmacist within the hospital didn’t carry Propranolol, and didn’t accept my insurance. The second one told me it would be several hours, but gave me a card with a number to call to check if it was ready when the Holter’s 24 hours was up. We really didn’t want to stay there any longer than was necessary.

In the end, everything went smoothly, and at the end of the 24 hours for the Holter, they let us go home. Beanie has had an appointment with the cardiologist every month when she comes to town, and she’s had two more Holters. The last one, in May, showed no more runs at all. The plan is to keep her on the med, increasing the dose every month as she gains weight (and boy, does she!) until she’s about 9 or 10 months old. Then keep the med at the same dose while she grows out of it. By the time she’s a year to 18 months, she will have grown out of it and they’ll do another Holter to see what her heart is up to. Hopefully, only about 120 beats per minute.

Beanie's Heart part one

I've been off composing the story of Beanie's heart condition, as it made sense for that to follow her birth story. What follows is the first of two parts. It's just taking a while to put it all together.

It was at my regular prenatal appointment in my 38th week that we first heard it. The OB cocked her head, and listened again. She covered the rest of the appointment, measured my abdomen, and then referred back to the Doppler. “Did you hear that?” she asked me. I had. Up to this point, whenever we listened to my baby’s heartbeat, there had been the familiar lub-dub, lub-dub of a healthy beat, generally around 140 beats a minute. This time, however, the beat sounded…erratic. Lub…..dub-dub…lub…dub-dub. My OB downplayed the irregular heartbeat, probably so as not to stir up that already raging anxiety and neurosis beneath the surface of every pregnant mother. She was so blasé about it that I had to repeat what she was asking me to do. “So, you want me to go over to the maternity ward…right now?” Yes, we were going to get a non-stress test, and listen to the baby’s heartbeat a little longer.

I had actually already done this once, last week, because my blood pressure had gone a little high. Not high in an objective sense, just high for me. I normally have pretty low blood pressure, so seeing a reading of 130 over 80 made me a little anxious. I actually enjoyed going to the maternity ward for the first time and getting a sense of it. I like to have as much information as possible before any big performance. First day of classes, presentation in front of colleagues, giving birth, it all requires some level of preparation. I sat on one of the labor and delivery beds, hooked up to the fetal heart monitor and another sensor for distinguishing contractions. Everything was fine. I had to stay a little longer than the predicted 20 minutes because the baby was too mellow. “We like to get three different instances of change in the baby,” the nurse told me. She wasn’t moving around enough. “She’s so relaxed,” said the nurse, “it’s like she’s at a spa.” I wasn’t worried. I drank some juice and that got her moving.

This time, however, there was reason to worry. I called my husband and asked him to come over, the heartbeat was irregular and I was going back for another non-stress test. We could all hear the arrhythmia, which at that point was very regular in its irregularity. Lub….dub-dub. Lub…dub-dub. Nurses were in and out, and we tried to get some information out of one. “What does this mean? What are we going to do next?” “Well, you’ll finish the test and then go home. You may need to do a level II Ultrasound to check out the baby’s heart. Dr. Yates will let you know.” They sent us home with very few answers, and little information. I was to come back in three days for another checkup, and other listen to the baby’s heart. And what do I do in the meantime? I thought. How do I know she’s okay?

This is where the pregnant woman neurosis kicked in. I tried not to think about it, but I became a little obsessed with feeling the baby move. I felt so powerless…she was so close, and yet there was no real way for me to check up on her. A day before I was supposed to go in, so only two days later, I called the doctor’s office. “I’m probably just over-anxious,” I said, “but it feels like the baby’s moving less. I know this happens in late pregnancy anyway, she runs out of room of course, but…well, with the heart thing…” We understand, they told me. Why don’t you come in today instead. Yes. I’ll do that. Good.

Jay came with me this time. Again, we heard the irregular heartbeat. Again, they sent us for a fetal NST. This time, with my concern over movement, they also fit us in for a quick ultrasound. She was fine. Of course, we didn’t know she was a she at that point, and even though we were having a second ultrasound, and were unable to see defining sex characteristics during the first one, it felt wrong to ask this time. He was only looking at her heart anyway.

I had another appointment three days later. It was still there. Dr. Yates set up that level II ultrasound at Baystate Medical Center, the big teaching hospital an hour away, for Friday, the end of the week. They couldn’t fit us in any earlier. Guess it wasn’t that much of an emergency was it? It was so hard to tell. I mean, it was her heart. Hearts are central, literally. Essential. Isn’t any heart issue fairly serious? Could we relax a bit that they weren’t demanding we get our butts down there immediately and let them take a look? I got directions from the receptionist to the OB/GYN practice, the one I don’t like. She’s cold. Uncommunicative. The Wesson Women’s group. She circled the word Wesson. Okay, no problem.

Friday. We’re 39 weeks now, and on our way to another ultrasound, and possibly a “fetal echo.” An Echocardiogram, I guess. We leave ourselves an extra hour to find where we need to go. Drive by. Okay, now let’s find some food. I’m 39 weeks pregnant, remember. The medical center is not in the nest neighborhood, and we couldn’t find anything but a McDonalds. We decide to double back and go in early. The information desk tells us the floor for the Wesson Women’s group, but when we get to the desk, they’ve never heard of us. A fetal echo? Well then you want cardiology. Down to cardiology. They’ve never heard of us either. No, really, I’m scheduled for a level II ultrasound. This receptionist is nice enough to check the computer. Apparently it’s a new system. Oh, there you are. You’re supposed to be at the hospital. The Wesson women’s entrance of the hospital. Great. Thanks. Gah. Thanks, OB receptionist I don’t like. Now we’re late.

And since it’s the hospital, we have to register first. Well, we register at the time our appointment was for, which of course means that we’ll be waiting in the waiting room for another 20 minutes still. Finally, they show us in to the ultrasound room. It has its own bathroom. I don’t have to take off my clothes and put on a johnnie. What a civilized hospital. The technician is a bit confused when we mention the fetal echo. Apparently it’s pretty difficult to do a fetal echo on a baby as far along as ours is. Her bones and other organs are too developed; they can’t get a good picture of the heart. They were able to get a better look with their more advanced ultrasound, however. It showed her oxygen levels in bright red and blue on the screen. I didn’t understand the significance though, and the technician wasn’t giving out a whole lot of info.

The resident OB came in to look at the ultrasound. He started explaining thing to us in more detail. What it came down to was that at this point, the arrhythmia was very irregular. The heartbeat sounded regular for a while, then there would be what sounded like a dropped beat. Sometimes it wouldn’t happen for 100 beats, sometimes after 50, sometimes there would be a couple of missed beats in a row. He also kept looking at a particular part of her heart that looked like it could be a hole. There was no way to know for sure. On the way home, Jay and I both said we thought we had seen that hole closed, so we weren’t that concerned about that. Finally, the OB looked at me and asked, “Have you talked to your OB about inducing?” Well, no, we haven’t talked about anything like that. He suggested we do so.

So, Monday and back to the OB. We discuss inducing. She explains that it is important that the baby be born vaginally, as that process might actually help to fix the arrhythmia. She goes on to inform us that to induce before I have actually started to dilate could create a situation where a caesarian section becomes necessary, and then we lose our vaginal birth. Therefore, she’ll check me every couple of days and once she thinks I’m dilated enough to be induced, we’d do it. Alternately, the baby could decide to just make her entrance sooner. We’d just have to wait and see. I spend the rest of the week on the couch, off my feet, but, while the cervix is softening, I’m not dilating yet to speak of.

My mom arrives from central New York the next Monday. Strangely enough, I begin to spend more time on my feet again, being hospitable (showing her where things are, etc.) Mom’s a little circumspect when it comes to inducing; she’s not a fan of drugs during childbirth. However, when we explain that we’d like to have the baby arrive before the weekend so that the full hospital staff would be present in case of an emergency, she agrees that would be best. The baby’s original due date was January 24th. On January 26th, we have another OB appointment, and hurrah! I’m 2-3 centimeters dilated. “Would you like to have a baby tomorrow?” asks Dr. Yates. Would I? My mom starts to cry. Her birthday would be Thursday, January 27.

The birth story itself has been posted elsewhere. Suffice it to say, 9 hours; half without an epidural, the second half with one. Labor came hard and fast with the pitocin, and the baby’s head was huge—15 5/8 centimeters, and the average is around 14 or so. I tore a bit, but as Dr. Yates said, “No more than was necessary.” We had heard the arrhythmia on the monitor during labor, but she looked great. They handed her to me, and I got to nurse right away (her latch was bad, and I ended up blistered, but that’s another story.) At some point they whisked her away and the pediatrician who was on call at that point checked her over and gave her an EKG, and pronounced the arrhythmia gone. I was doubtful, and one of the nurses agreed, saying she could still hear it herself. The next day, a second pediatrician checked her out, did an extended EKG, saw the arrhythmia, and ordered a Holter monitor, which is sort of a 24-hour EKG, complete with journal of activity to match up with heart behavior.

After that 24 hours was up, we were able to take her home. She was perfect, except for the tongue thrusting, but our smart baby figured out how to keep her tongue down with help from an SNS and daddy’s finger. By Sunday she was nursing again, and correctly, though I would remain sore for a while. On Monday we were to go in to our permanent pediatrician, who was not affiliated with the hospital and had not seen the baby yet. Just as we were going out the door the first pediatrician from the hospital calls to tell us the Holter report is in. He’s faxing it to our pediatrician, who will have it when we arrive. He used the word “significant,” but gave no other real information.

To be continued...

Beanie's first Holter