Monday, July 8, 2019

NICU EDU


Is it possible to learn something about teaching from your newborn daughter spending a week in the NICU? Is it exploitative or in bad taste to try and talk that out in a public space?

Here are my answers to that, starting with the latter- I don't think so. I'm being open and honest about an experience that, according to the messages I got during the week we spent in the NICU, many parents have experienced. Now, whether or not it's in bad taste to try and learn some message or truth about teaching from it is another thing entirely. I'll be honest, I won't know the truth of that until I get to the end of this post. Writing is how I think things through, it's how I reflect. So if I get to the end of this and all I get is some forced, trite nothing then this post probably won't see the light of day. If I get something that I want to share, something that feels true, worthy, and worthwhile without being cheap then you're probably reading this. As I write this I don't know which it is yet. You do, because you're in my future as I write this. Hello from the recent past. Has Pelosi gotten her head out of her nether regions and started the impeachment process yet?

A few months into this pregnancy my wife and I were told that our unborn child has some kind of heart issue. We ended up going in to get a fetal echo-cardiogram with about three months left in the pregnancy, and the result of that boiled down to "Yes, something is wrong with the baby's heart. But we're not sure how bad it is, right now it's mild. Hopefully it'll get better as baby grows. Come back in a month." Which began a frustrating but completely understandable cycle of doctors telling us "I don't know. We'll have to see." Which I understand, but understanding doesn't really help when it's about your baby's heart.

A month later we went back for a second fetal echo. Maybe it'll be better. Nope. "Something is still wrong and now it's moderate to severe." They start discussing what will happen after the baby is born. We were planning this birth to be like the second one- in a birthing tub with a midwife, which was as easy as a birth could be. No, now we're fully in the big children's hospital's care, we're delivering there, and baby will probably go straight from being born into the NICU. Lots of "probably"s start coming up. Maybe surgery? Maybe not? Maybe three days? Maybe three weeks? We'll see in a month at the next echo. Maybe baby's heart will get better as it grows. (Yes, it at the time because we didn't find out her gender until she was an outside baby. I'll call her "her" from now on though since we know now.) Also we're going to do weekly scans to make sure nothing else is going wrong because of the heart issue.

I told my principal right away at the start of this because my wife found out before I did. She was having a regular scan that was supposed to take twenty minutes or so and it turned into a two hour appointment. She called me from the car afterwards during my lunch time. We don't call each other, we text, so this was weird. My lunch ended while we were still discussing what she'd found out, so I went to the office to ask if someone could watch my kids while I talked to my wife. No questions asked they took care of it. Afterwards I let my boss in because she needed to know I'd be asking for time for appointments. "No problem, family comes first. Here, this is a good sub, you call her now and get the dates in." My principal is the best. Please remember that this is also now the final month of school. I'm part of the small team putting on the MakerFaire. I'm doing grades and all the other end of the year stuff. I'm focused, but there's always this thing in the back of my head now. "Something very serious is wrong with your baby's heart. How serious? Dunno." I'm shorter with my kids than they deserve a few times. Not in a Bad Teacher way, but not in a Caring and Wonderful Teacher way either.

Another month passes. The echo upgrades or downgrades her heart's condition again from "moderate to severe" to straight "severe". We are given a tour of the NICU at the hospital. We are walked through all the possibilities again- NICU, how long/dunno, surgery maybe/dunno. Our birth plan goes from "baby is born with a midwife in a tub and we go home the next morning" all the way to "baby will be born and then baby and dad will come with a team of nurses to the Resuscitation Room (this is not a comforting name for this room, true or not) where we will assess, then baby will head straight to NICU and dad will follow with us. Mom will stay, get checked in for recovery, and come down a few hours later once she's able. We don't know when you'll go home."

We're in the home stretch of school now, final week basically. I've had a bunch of half day Fridays because of appointments I was not going to miss. My kids knew I was going to baby doctor appointments, that's all they knew. Very few people knew more. You can only explain this stuff so many times. More on that later. I'm having a harder and harder time being cool with things not going exactly to plan. Again, not in a Bad Teacher way, but in a struggling way.

Here's the best example- Our bench project ended and our benches were delivered and it was awesome. This was, I think, the Tuesday after the Monday where we'd been told baby's heart condition was severe. I'm told right after the reveal that the plans for the benches have changed, they'd be inside instead of outside, what my kids and I had worked for was being modified in a small but significant way by forces outside of my control. And I kinda snapped at my principal and the other adults involved. I didn't get aggro at them or yell and scream or anything, but I made a case for the original plan and how it had to be presented to my class if it were going to be changed in a more impassioned and forceful way than I normally would have. At recess afterwards I went to my principal and told her I was sorry if I came off as rude, but I'm realizing that I'm more emotionally compromised now than I originally thought by all the baby stuff (which, remember, she knew all about). She, being awesome, was totally understanding and took it upon herself to help explain the changes to the kids so I could be on their side and she could moderate between us and the new plan, while helping me not need to directly engage with what would normally be an easy change but was at the moment just one too many things not going the way they were supposed to.

The year ended. My wife had a false labor where we went to the hospital, things were moving, and then everything stopped. This was on the very last day of school. A wonderful coach in my district helped pack up my classroom the next day because we didn't get home until after two am.

Then we waited.

Those of you who've done this know that the waiting at the end of a pregnancy sucks. Every noise my wife made had me going, "Is it time?" as I'm halfway to dialing the friend who will watch the kids. I've never been there for the start of labor. With our first she woke up in labor and I was doing a biathlon, so I came home and we left for the hospital. With our second I was at school and she called me to come home at lunch. Finally though it was time.

Labor was labor. It started, it stalled, we watched Ocean's 8 on the hospital TV (it's ok, some fun moments), we tried to sleep, then it finally got going for real, my wife was amazing, and out came our little baby girl. Angela, my wife got to hold her and see her, but only for a moment, and then they took her, put her into this rolling cradle thing with a clear top that closes over her and a million sensors, and walked very quickly to the Resuscitation Room with me in tow. Once there I got out of the way and watched a team of maybe four or five nurses work on my brand new baby girl. She wasn't breathing right and had meconium (basically baby poop) in her lungs, so they had one person with a breathing mask on her face while another was doing some suction thing to help clean her out. They did all the weighing and scanning. They were purposeful. If it wasn't my daughter there it would have been an inspiring level of teamwork. I tell you what, they were also the calmest humans I've ever seen, and they helped me stay calm. There were two who traded off talking to me, explaining what all the numbers and lights meant, what they were doing, how she was doing. I saw her face for a second after she was born, and then I didn't get to see her full face again for three days because of the breathing help she was needing.

They let me take a few pictures and then took some x-rays, when meant everyone out of the room. I hurried back to the delivery room, kissed my wife, told her the baby was doing good, showed her the pictures I took, and then went back to the baby and off we went across the hospital to the NICU.



With our first baby, he tore my wife up pretty good on his way out so they had to take her away to do surgical repairs, and I was left alone in a room with the first brand new human I'd ever met. We hung out and I did everything I could to keep his head from falling off, which it seemed to be in imminent danger of doing. With our second one she needed very few stitches, it was done quickly while I held the baby, who immediately pooped all over me. (True story- I said, "Asher just pooped all over me." My wife and the midwife said, "No, he's just all wet from the tub and baby cheese." I said, "I've been pooped on by a baby, I know what happened." The midwife took the towel I was wrapped in and said, "Oh, you are right. You were pooped on.") But now I've been in three room, walked quickly up some long hallways, and was now in a smallish room with a bunch of nurses who were still concerned about why she wasn't breathing on her own like she should be. Wires were being attached, tubes were going in her nose, gauze was being wrapped around her to keep the tubes in place, and she wasn't making much noise at all except a few squeaks. They were explaining things to me the whole time in calm, clear tones, and I'm sure I asked the same questions over and over.

At some point my wife was moved from delivery to recovery, which was a few floors directly above the NICU. I don't know how many elevator trips I took that first day. I do know that as soon as they let her we put her in a wheelchair so she could come down to our NICU room and see the baby. We couldn't pick her up or hold her without permission and help because there was so much stuff on her. We could reach in and touch her and talk to her. She didn't do much. New babies don't really, but she really didn't. She was focused on breathing.




They told us that her heart defect was impacting the operation of her lungs. Without going into too much detail, the defect had caused her heart to expand, and that expansion had gotten in the way of the lungs, so they weren't inflating like they should. Hence the breathing help. Well, we were prepared for heart problems. We were not prepared for breathing problems, no one had mentioned that one might cause the other. I'm not angry or blaming anyone, they told us plenty of times that they didn't know what her condition would be once she was born. I guess babies do a lot of equalizing to the outside world in those first few hours, and that would tell the doctors a lot. So her lungs weren't expanding and she wasn't breathing regularly.

I tried to sleep.

At some point during the night the decision was made to intubate her because she was working so hard at breathing that she was making herself too tired. So they put a breathing tube into her mouth down into her throat. They also decided to use her remaining umbilical cord as an IV access. We'd been told about this- since the umbilical cord has veins and arteries in it, and baby veins are so small, what they do is insert all the stuff into the remaining umbilical cord rather than tying it off. Which, from a distance, is really cool science. From a distance. We couldn't be in the room for this, of course, you need a sterile environment. We waited in her recovery room and then waited outside the NICU room.


Here's the kind of ridiculous mindset I have about situations like this. In order to stay sane and in control, I decided that I would be The Best NICU Parent. I'm a smart guy, I know things, I understand complex ideas, I've got a basic understanding of the human body. I'm going to listen carefully to the doctors and nurses, I'm going to use their words with them, and I'm going to ask smart, insightful questions, so they know I'm together and with them and focused on what's happening with my daughter. Here's what kind of conversations I ended up having- "So this thing here going into her mouth, this, uh, tube. Right. This tube. It's a...? A breathing tube, I see. Yes. Ok. And the purpose of this breathing tube is...what? To help her breathe. The breathing tube is to help her breathe, I see, ok. And breathing, that is...important. Right?"

If I could take one thing from this experience back to my classroom, it's that right there. The nurses and doctors probably had some version of that conversation with me a dozen times, not including that same type of conversation with however many other parents under their care. And not once, not even for a moment, did any one of them seem impatient or annoyed or anything but completely and totally understanding and willing to explain every little beep and light and number one more time if it would help my mental well being. I think I'm a pretty patient teacher, but I don't have a thousandth of the patience of these people.


All the machines in the room beeped all the time. She'd breathe over what the machine expected and a light would flash yellow and it would beep. Her oxygen would dip below a certain level and it would flash red and it would beep. Constant lights and little alarms. It wears on you. The nurses don't come rushing in at the alarms so it can't be serious, but if it's not serious why is it beeping and flashing red? Red means serious, doesn't it? I know why, but when you're in the room, trying to sleep, trying to be cool, knowing why doesn't help.

This was the hardest time for me. The tube meant that the baby couldn't make any noise at all. But she could still look upset with her eyes and her hands. The medicine they were giving her to help her heart was also, as a side effect, making her very uncomfortable and she was having regular shakes and tremors. I couldn't hold her without asking for help because there were so many things going in and out of her. And I couldn't hear her. I know what a baby looks like when it wants to cry, and she kept making that face, but she couldn't. Once they changed her diaper and did some housekeeping stuff with her, and she made that face, and I couldn't any more. I walked to the bathroom and broke down sobbing. Helpless. Impotent to help my daughter in any way even as she made that face that said all she wanted was some comforting. Not what the nurses were doing, which I can't say enough was as caring and gentle as it could have possibly been, but parental comforting. I pulled myself together enough to walk to the elevator and go up to my wife's room because I realized that if I was in the room feeling this, she must be having just as hard a time if not more having to be in recovery. I fell against her and sobbed for a thousand years. I'm not sure what day this was, but all the stress of however many days and months poured out. Eventually one of her nurses came in and I went back downstairs and cried some more over my little girl. Helpless.

So I did what I knew how to do. Powell's, the giant bookstore, is in downtown Portland, seven minutes from the hospital. It's open until 11pm. We didn't know if we were having a boy or a girl so I wasn't prepared with the book the girl would be named for- Coraline, by Neil Gaiman. Wonderful book, perfect name for us. I pulled myself together and went to Powell's. I found the book, a little book light, and, in a bizarre twist of luck a Funko Pop of Coraline from the movie. I brought it back to the hospital and read to her. Read to her so she could hear my voice, read to her so I had words to say, read to her so I could do something for her, read to her so I could maybe lose myself a little in Gaiman's wonderful world for a while. And it helped. It helped so much. Reading to her every day got me through.


That was the worst of it and the next few days got better and better. They stopped the medication so she stopped shivering and trembling. She got her breathing tube out and was given a nasal cannula, those little tubes that go up into your nose you see in every TV cop show that someone bravely rips out to go back into the field and finish what he started. They started taking monitors off her. We could finally see her whole face. We could hold her for long periods of time. She could nurse. Her numbers improved. Her heart was still not working like it should be, but things were adapting around it. Or something, I'm not a doctor and I was confused by a breathing tube. The boys were being watched by friends, then my mom, then my wife's dad, and they got to come in every day and see her too. It helped, seeing them.

Here's why I'm not being too specific- First, you don't need all that. Second, I spent a week texting various family members updates multiple times during the day. They're gonna read this, so I'm going to say that I understand why they wanted an update every three hours, I would too if I were them, but you can only explain "I don't know, I haven't heard from the doctor" or "I don't know, she's fine now I guess" or "Yes, the tube is still in" so many times before you want to fastball your phone through the window. Not their fault, totally understand, but patience is a struggle.



After one week they told us we could take her home. The cardiologist told us that she probably won't need surgery, and if she does it won't be for years. He said not to worry about anything that we wouldn't worry about with the other two kids, and to treat her like a normal baby. I still don't really understand how, to be completely honest. She's living with a heart condition that had her, I'm sure. near death multiple times in the first hours and days of her life. And now she can just live with it? I believe him, and she's been totally fine since, but it's still a miracle to me that it's true. I thought for sure we were going to have to do surgery.



What did I learn from this that is applicable to the classroom? I don't know. It ended a week ago. To be patient? More patient? That's probably the biggest thing, my personal level of what a truly patient and clear teacher is is no longer a teacher, but any one of a dozen NICU doctors and nurses we met over that long hard week. I know for certain that next year I'll be working with a struggling kid and think What Would a NICU Nurse Do and then calmly explain the process again. I know that I've seen a team in action that saved my daughter's life with their calm, professional, expert communication and teamwork, something I aspire to with my grade level and committee teams. Can I be more like that Resuscitation Room team? Can I be more like the NICU nurses when they hand off patients at the end of twelve hour shifts? I know that, even though I knew my principal cared for me and wants what's best for me as a person, I know that even deeper now, and if she ever every tries to leave I'm going to chain myself to her desk so she can't. I know that I have friends who will step up in amazing, wonderful ways to help and to listen and to be there. I'm not going to list them because a) they know who they are and b) I'd miss someone and feel terrible. But so so many of you out there did more than you know to help me through a very hard time, and I'm going to be a better friend because of that. I know that Neil Gaiman, just like Terry Pratchett, is more important to me than I ever realized and he'll probably never meet my Coraline, but if he does I'll tell him how brave and strong she was just like his heroine. I'll also tell him that, just like his heroine, people are immediately calling her "Caroline".

She's home now, and happy to nap on me or, more preferably, on her mom, who has both the milk and the comfortable pillows. Her brothers are infatuated with her and can't wait to teach her All The Things. And, as odd as I would have said this sounds, I love that I can hear her cry.


If you like this post and the other posts on this blog you should know I’ve written three books about teaching- He’s the Weird Teacher, THE Teaching Text (You’re Welcome), and A Classroom Of One. I’ve also written one novel- The Unforgiving Road. You should check them out, I’m even better in long form. I’m also on the tweets @TheWeirdTeacher. And I'm on Instagram at TheWeirdTeacher too where there are a million pictures of the baby being uploaded every day.

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