Thanks to a missing ear and jacked-up kidney, by 3 weeks of age my Nugget and I were spending at least one day a week at the hospital for testing. Nuclear scans, ultrasounds, IVs and catheters were pretty run of the mill for us and after the third or forth, I finally got over that feeling of fainting when they plunged the needle into the little chubby arm of my offspring. I can also safely say that in that time my boobs spent more time out in public than some high-grade stripper’s boobs do during a low-tipping shift. My Nugget was no welterweight and fat guy’s gotta eat no matter if you’re in the middle of Radiology or not.
Some tests were easier than others but he handled them all like a champ. (Later we’d find out that he saved up all that hostility for his toddler tests.) Turned out that the kidney didn’t just have hydronephrosis – also known as a blockage to those of you who don’t revel in learning big words – it was also severely deformed. It wasn’t damaged yet but it wasn’t draining the way it should. His doctor, who was aptly named Dick, wanted to operate immediately. The Turk and I were not down with that. There was no proof of damage, no proof of immediate need and both of us felt Dr. Dick was just a big fan of the glory provided by infant surgery. The fact that he spoke to The Turk like he was a moron because of his accent did not help either. Sure Dr. Dick was the best in the city, an innovator, the head of Pediatric Urology…blah…blah…blah but he was a dick and we couldn’t get past that. It all fell to pieces during an office visit around 3 months.
***I wish I could say the following is a dramatic recreation of the event but it’s not. It’s pretty much word for word. I’ve learned that when you’ve got a sick baby you can get away with saying all kinds of crazy-ass crap. That’s rather dangerous for someone like me.
Dr. Dick – “I don’t understand why you are so hesitant to get this baby fixed. What if he’s in pain? Don’t you want to prevent that?”
Me – “Do you think he’s in pain?”
Dr. Dick – “Maybe, maybe not. We don’t know. But if we fix it now you’ll likely see a change.”
Dr. Dick – “Well what? I feel like there is something you’re not telling me. Just say it.”
Me – “Ok. You want to know why I’m hesitant? I will tell you. You’re an asshole. We don’t want you to operate on our child because my husband and I think you are an asshole. You know this kid’s kidney but you have no idea what his name is. You’ve never examined him once and quite honestly, your matching socks and belts every damn time we are here annoy the hell out of me, but mostly, you are just an asshole.”
Awkward silence while nurse’s eyes bulge out of her head.
Dr. Dick – “Alright then. If that’s how you feel, I think you need to see my partner. I am fine with that. He is a great doctor and a better match for you. Best of luck.”
As Dr. Dick departs his nurse turns to me and whispers, “No one ever tells him that but he really is an asshole. Thank you.”
A few weeks later we met our new nephrologist, an adorable little man in horn-rimmed glasses and a bow-tie who suggested we watch the kidney for a few months and see if maybe it rectifies itself. I was immediately in love. Just like that, with the wave of his bow-tie our new doctor put the kidney on hold giving us time to figure out the ear.
Microtia is a congenital birth defect in which the ear does not form during the first trimester. It can occur bilaterally or unilaterally as in the Nugget’s case. It occurs in 1 out of every 6,000-12,000 births. It is usually accompanied by Atresia (a Latin word meaning closed) – a missing or closed ear canal. See that, first I taught you big words, now I’m teaching you Latin. It’s amazing what one can learn on the interwebs…which is exactly how I leaned about Microtia-not from a doctor, not from the hospital, but from Google.
Our then, very male, very white, very clueless pediatrician had no idea that there was even a name for what he called Nugget’s “malformed ear.” He told us we had no need to have his hearing tested since we could see his ear was closed. He also told us he’d spoken to an ENT upstairs from his practice and we should just wait until he was older to see if he answered to his name, if not then he might have a hearing problem. Because in 2013, the best way to know if a child is deaf is to wait for them to answer to their name much like one would’ve done on Little House on the Prairie. Obvi, modern medical has no better solution sir. I think you see why he is our former pediatrician. (Sidenote – our pediatrician now is a dead ringer for Shirley from What’s Happening and we’re all much happier.)
Not being one to put my trust in a wimpy white man, doctor or not, I took to Googling. I knew this ear thing had a name and I needed to know if there was anything else connected to it. I typed in – missing/closed ear and BOOM! I got a wealth of info in return. Everything listed was exactly what we were dealing with and in addition to the information I also found an amazing group of parents and Microtians (No seriously, that’s what these missing eared people call themselves – how freaking awesome is that? I want to be a Microtian.) on Facebook that over the past two years have given me more info, reassurance and comfort than any of the multitudes of medical professionals we’ve seen.
The next two years were a blur of hearing tests, sedated hearing tests, procedures, ENT visits, and the constant question – to aid or not to aid. Then there was the learning curve on the hearing aids. Because he has no opening he has to wear a special kind of aid called a BAHA. But don’t worry; there is a Facebook group for that too.
There were ear infections in the little ear and ear infections in the good ear, which are a really big deal when you only have one ear. There were more tests to make sure the infections didn’t harm the good ear and then there was the balance issue that caused everyone to panic, certain there was something else going on with this little Nugget. There wasn’t. He just needed a tube in his one good ear and balance was restored. But alas, I got a few more grays in the process. P.S.- Thank you Jesus for Miss Clairol.
Though I’m not a huge fan of Indiana, there is one thing I can say for certain; it is a great place to have a kid with issues. From the minute we left our first hearing test and he was labeled Hard of Hearing – (I know right? – I always thought that was an offensive term but it’s actually the technical term. The more you know huh?) we have been part of Indiana’s early intervention program. We’ve had developmental therapists, occupational therapists, parent guides, deaf mentors, sign language tutors and speech therapists all come right to our house with copays that are less than a grande latte. Good on you Hoosiers. We also got courted by every deaf and hard of hearing organization in the state, with outings, meetings and playdates. Everybody wants the deaf kid! Ok, maybe not the kids in that one playgroup where the Nugget kept pulling off their Cochlear Implant Processors but in his defense, they are attached to the kids’ heads by magnets so if you pull them off…well you can see how a rowdy toddler could find this amusing. Some groups we are still a part of and some we broke up with. Just because you share a diagnosis doesn’t mean you’re compatible, but it’s nice to have the offers.
Now, two years out, the physical side of the ear isn’t very important to us. Of course I worry about some asshat kid bullying him but I’ll make sure he’s got Chuck Norris-like butt whooping skills to take care of that. I also constantly fret that his speech delay is connected to his hearing or that something will happen to his good ear. We still debate to aid or not to aid at least once a month but audiologists assure us we will know when it’s time. Sure there are surgeries he can have when he’s older and prosthetics he can wear but nothing will change his hearing except an aid and now that he’s got hair you hardly notice his lopsided head. And not to toot my own horn but with the genes this kid’s got, he’s still damn good lucking even with a lopsided head. Toot-toot.
For now, we’re just taking the ear in stride and aside from cultivating a love of Nemo (You know, because he had that whole little fin thing- get it?) and helping him learn to locate sound we don’t pay much attention to the little ear. Sure, we still tease him by putting elf ears on him at Christmas and making “normal” jokes and of course, the comedy of a one-eared kid trying to wear sunglasses never ends, but all in all, it’s no big whoop. We got ourselves a Microtian and that is about as amazing as having a Klingon.