The Worst Week and a Half of my Life

What do you wear on a day you might find out your baby has a serious health problem (something that starts with a “c” and ends with, well, you know)?

I went with the usual “I don’t really care” outfit, which for me consists of Victoria’s Secret “pink” sweatpants (I know, fashion police, hunt me down, spray me with mace, swear at me, make me get down on the ground, put me in your SUV, offer me a cigarette, and drive me off to jail while referring to me as “brah”), a t-shirt from Urban Outfitters that says “St. Tropez” on it, Converse All Star low tops, a Ben Sherman athletic jacket, and my default glasses. If I’m going to sit around all day waiting to get either very good or mindblowingly bad news, I at least want to be comfortable. Lipstick but no eye makeup.

A couple weeks ago, I noticed that, in dim lighting, Soren’s pupils are not the same size. At first I thought I was imagining it, but after a few days, I realized that I wasn’t. I googled the hell out of this and learned a few things: it could be nothing worse than looking a little bit like David Bowie (anisocoria, when your pupils are just different sizes and there’s no bad reason for it) or it could be something really bad (tumor, cancer). I figured that, because he didn’t have any other symptoms, it was probably just anisocoria.

We went to the pediatrician to have it checked out, and the PA thought it was probably nothing (and couldn’t even notice it in the bright light of the exam room) but recommended that we have Soren checked out by a pediatric ophthalmologist just to be safe. So last Thursday, B took Soren to the appointment. (I didn’t go. We didn’t think it was going to be a big thing.)

The phone call I got from B was not good. I was at the gym. I sat in the locker room and sort of participated in a conversation that included phrases like “the bad news,” “the really bad news,” “Horner’s syndrome,” “MRI,” and “tumor.” I didn’t really hear much after “MRI” and “tumor” to be honest. There also was something about not being able to schedule the MRI until we got approval from the insurance company.

I’d kind of like to go off on a tangent here about how thankful I am that Soren has decent health insurance and how it’s a travesty that anybody in this country could face what we just faced, or any potential health crisis, without adequate insurance coverage. But I won’t, because I already have too much to say.

Everybody says not to google this kind of thing, but you know that’s pretty much all I did for days. According to the eye doctor, Soren most likely has congenital Horner’s syndrome (sometimes referred to as Horner syndrome). HS generally has the following symptoms: unequal pupils, a droopy eyelid, and a lack of sweat and/or flushing on one side of the face. It’s caused by a disruption/damage to the nerves that travel from the brain to the eye (which, I didn’t know, go from the brain down through the neck to the chest and back up to the eye). HS is rare and can be present at birth for no apparent reason or it can be caused by an injury or tumor. The tumors are the really scary thing, and we had to take Soren for an MRI of his head, neck, and chest to rule out a tumor (according to the doctor’s notes, we had to rule out neuroblastoma and gliomas, but there also are other tumors associated with HS; I am very glad I didn’t google “glioma” before the MRI).

Anyway, I’m not sure if he said “most likely congenital Horner’s syndrome” because it’s most likely congenital or it’s most likely HS. Soren has only one of the symptoms (anisocoria). We’ve been obsessing over his eyelid since we found this out, and it doesn’t appear to be droopy at all, and his whole face flushes when he gets mad.

Thankfully, we got insurance approval the next day and had the MRI scheduled for this past Monday, 11 days after finding out we needed it. As far as I can tell, that’s very speedy MRI scheduling, for which we’re very thankful. Of course, that doesn’t mean those 11 days weren’t filled with an awful kind of terror I hope to never experience again. Every part of my brain was filled with terrible thoughts during those 11 days. What if this? What if that? I’m not even going to tell you what I was thinking, because some of it is too awful to even put into words and set free into the world. Even saying it has to be bad karma, and I’m all about karma right now. I’m not even bitchy any more, partly because it’s the right thing to do and partly because I am not willing to suffer the consequences of anything I do wrong. I’m sure you can imagine, anyway. What if the worst possible thing happens? What happens after that? What do we do? How do we survive? How could the universe be so cruel? The universe can’t be so cruel. Oh yes, it can.

It got a little easier after Wednesday, when I talked to some cool people who know about these things who said that, if they thought something was really wrong, they would’ve gotten us an MRI right away. This made it easier for me to tell myself that everything would be okay and believe it at least part of the time. Thinking about this got me through the next few days without being in a constant state of panic, which was a big improvement.

Children’s Hospital has a nice, shiny, new campus out in Aurora. The drive out there was fine. On the way, I tried to avoid searching for meaning where it doesn’t exist, in the color of the sky or the traffic or the way the trees look and whether these things could happen in a world where we’re about to get very bad news. Of course, the world is neutral. The trees don’t care what happens to us. This is almost comforting. We’re all insignificant. (Isn’t this something the guy from Zen and the Art of Motorcycle Maintenance would say? That the only zen you have at Children’s Hospital is the zen you bring there? Oh wait, didn’t his son die?)

I was so anxious as we entered the building I felt like I was on autopilot, like I could walk and sort of function but anything that required thought would’ve been impossible. Weirdly, one thing that helped was some of the cool artwork they have around there. It provides a really good distraction, especially the bunny sculptures (big giant ears, look like our min pin) outside the main entrance and the big thing with dogs and balls on tracks that makes noise outside radiology. I’m sure the people who design hospitals do this on purpose, and I really appreciated it. The crazy carpet in the radiology waiting area helped, too. You can kind of get lost in it.

While we were waiting, we saw kids with what appeared to be serious health issues. I realized that we might become people with a kid with a serious health issue. (I mean, the big C is about as serious as it gets, right?) I didn’t want that to happen to us. You think about bad things when you’re standing in the lobby, watching the elevators go up and down. You think about this being your baby’s first trip to the hospital (he wasn’t even born in a hospital; we’re not hospital people). Bad things happen in hospitals. You get bad news. People die. Any of these things could happen to us. The fact that they happen to anybody is tragic. You don’t want it to be you but you don’t want it to be them, either. You feel helpless and more scared than you’ve ever been in your life.

I finally know what it means to want to give my life for someone else. I’d rather have a million health problems than for him to have one.

We went from one waiting room to another, where one of the radiology peeps (nurse? tech?) explained the general anesthesia and listened to Soren’s heart and lungs (thankfully, she didn’t think he was too congested, which we’d feared — that would mean we’d have to reschedule and prolong the terrible waiting). Then we went to Soren’s little private room, where we’d wait and where he’d recover. By that time, he was very upset because he couldn’t have milk after 9 a.m. and was starving (the MRI was scheduled for 1:00). We tried to distract him with ESPN on the tv, singing, bouncing, the usual baby stuff. Sometimes it worked and sometimes it didn’t. By the time the anesthesiologist came in, Soren was screaming. I was lightheaded. Something about “minimizing the risks.” I tried to pay attention and understand everything even though I didn’t want to think about what I was trying to understand.

With such little babies, they don’t let you be in the room when they go under. I think this is good because we were already such a mess we didn’t want to see it. They took him at around 1:05 and gave us one of those pagers like you get in a chain restaurant that tell you when your table is ready. We went to the hospital cafeteria to eat (one thing I’ll give lactating credit for — it lets you be hungry and eat even when you’re too stressed to eat). The pizza probably wasn’t really wood fired, but it wasn’t bad. I drank a Coke and ate every ice cube from the cup, a habit I acquired while pregnant (on the very rare occasions I have a fountain Coke). Every day for almost the past year I’ve had you with me and I love you more than anything in the entire world. This can’t go wrong now.

During lunch, I took the pager out of my bag, put it on the table, and glared at it. I was terrified of it going off soon. The MRIs were supposed to take at least two-plus hours. If we get paged before that, it means something went terribly wrong.

After lunch, we ended up in the hospital’s library, looking for a book on Horner’s syndrome (there wasn’t one). We couldn’t find anything about eyes or neurology. Then the pager went off. It was just over an hour since we left.

Holy fuck.

We just about run across the lobby to radiology. I put my luggage (overstuffed handbag, breast pump) on a table and have a panic attack. What happened?

A woman comes out and asks if we’re Soren’s parents. She seems happy. I’m a parent? Everything’s fine. He’s done. He’s waking up. I almost trust the universe again.

We’re reunited with a very groggy baby who has an IV needle taped to his hand. The poor kid is wearing a tiny hospital gown covered with bears in space and no socks (we always dress him in footed sleepers and I didn’t think to bring socks).

The recovery process isn’t bad. Soren has a bottle and we hold him so he can’t scratch himself with the IV getup and so he can inhale a little oxygen when the pulse ox (is that even right?) thing starts beeping. Everybody is very nice. They seem like there isn’t bad news about to fall out of the sky and crush us.

After Soren is ready to go and I’ve fulfilled my pumping duties, we head out and B suggests stopping by the eye clinic. I had emailed the doctor on Friday, letting him know that we would be getting the MRI on Monday and asking when we could expect the results. He got back to me right away and said Monday or Tuesday; he couldn’t guarantee Monday because he’d be on city-wide call and might be at another hospital. It turned out that he was in. He’d be out to see us between patients, when he had a chance.

We sat in an incredibly sunny waiting area, with Soren asleep in the stroller. It didn’t seem like we were about to get very bad news. It just didn’t. But you never know. After about 10 minutes, the ophthalmologist, a true type-A kind of guy who shakes your hand, tells you what’s what, and then disappears as quickly as he arrived, came out to talk to us. The MRI revealed that Soren has a cold (paranasal sinus disease is what the report said, trying to make it as ominous as possible). Everything bad is fine. Or something like that.

No tumor. No cancer. No end of the world.

I know I’m probably being over-dramatic and ridiculous about this. My kid is fine. It’s not like we were all buried under rubble in Haiti. But this shit really freaked me out.

I’d like to tell you that this experience fundamentally changed me as a person. I think it did. But telling you that right now means nothing. It only means something when I do all the things that I’m going to do and all the things that are going to be different are different. In a way, this was the worst thing I’ve ever experienced but now that it’s over, maybe one of the best things to ever happen to me. Now I know I can be a better mom than I ever imagined. And that’s really fucking awesome.

Update: Almost a year later, Soren is awesome. His Horner’s syndrome symptoms haven’t gotten any worse (the doctor said they wouldn’t get worse) and his eyes have both changed color a bit (from blue to more gray with some hints of green). His right pupil is still larger than the left pupil, but other than that, he looks perfectly normal. If you’re dealing with a baby who has Horner’s syndrome (also known as Horner syndrome but I’m defaulting to the ‘s version now because it seems to be more popular) and are freaked out about it, feel free to comment here or email me. The waiting before the MRI was so hard for us, and it made me feel a lot better to talk about it (even though I didn’t know anyone who had been through the same thing). In all my obsessive googling, I found that, more often than not, babies with Horner’s syndrome end up maybe looking a little different but otherwise being totally fine. It’s one of those things you have to get checked out and it’s terrifying, but chances are your kid will be fine just like Soren.

I like the idea of us all sticking together. Horner’s syndrome is so rare and there aren’t very many of us who have had to deal with it.