Today I went to the OBGYN for a regular check up– my first one since giving birth to Sophie.
Receptionist (reviewing my forms): “Oh. We have you in the system as Emily. Did you change your name?”
Me: “What? No. Why?”
Receptionist: “Under patient name you wrote ‘Sophie.'”
Me: “Oh my god, I did? Sorry. That’s my daughter’s name. I’m always going to doctors for my kids and can’t remember the last time I had a check up for myself, I must have been on autopilot.”
Receptionist (smiles politely): “I see. So you’re still Emily?”
These were the wise, educated (!!!) words of our pediatrician, who had just finished examining Nora (3.5 years old at the time) and who determined there was absolutely nothing wrong with her.
Me: “So…just ignore that she’s suddenly pooping her pants multiple times a day? Even though she’s been fully potty trained for a year now?”
“Yes”
“And the constant complaints of stomach aches? And that her ‘legs feel tired’?”
“Attention.”
“You’re sure?”
“Look, you just had a baby. This is classic behavior in reaction to having a new sibling. Just ignore it and she will adjust.”
So we followed doctor’s orders for about a month.
And in a super unfuckingsurprising turn of events, it got worse.
And here’s the thing– Nora absolutely LOVES her baby sister. I mean, I know all siblings love each other in their own way, but Nora loved Sophie immediately, in a freakishly angelic-like fashion. I couldn’t understand how a former only child of 3 years could be THIS cool with the helpless, screaming, spastic alien we suddenly brought home to live in our house forever. But Nora was the best.
All she wanted to do was help take care of “Baby Sister”– cuddle with her, feed her, assist in diaper changes and bath time. I mean we took these pictures on WEEK ONE:
Could you die?!
And while yes, there were some rocky moments….
….Nora found the humor in them and always tried her best to be a comforting big sis to the atomic bomb that was newborn Sophie.
So the whole “doing this for attention” thing wasn’t really adding up. Honestly, that’s not really Nora’s style (I can already tell it’s definitely going to be Sophie’s M.O., though, so I’m prepared to grab a hat and hold the fuck on). I had read all the literature about how older siblings often go through a period of “regression” when the new baby arrives, but something in my gut told me this wasn’t that.
Also, you know what’s really hard to “just ignore?” Shit. Like– literal shit.
Eric and I were doing our very best not to show any visible frustration or, worse, to shame Nora for the accidents, but bottom line is that we couldn’t go anywhere or do anything without bringing at least 5 changes of clothes, a travel potty, wipes, and plastic bags for poop explosion storage. Any activity outside the house was interrupted by at least one accident, followed by a 5-10 minute water-wipe “shower” in the nearest public restroom or, more frequently (and fun!), the trunk of our car.
It was exhausting.
But moreso, I worried about the social aspect, and the eventual toll it might take on her self esteem. Nora was still at the age where other kids in her class weren’t really noticing or caring, but I knew that would only last for so long. At some point, she would be the smelly kid, and I’m sorry but that shit (again, literally) was not happening on MY watch.
So Eric and I did the uncomfortable but necessary work of telling the doctor “Hey, I know you learned a great deal of science-y and doctor-y stuff during the insane amount of schooling you went through in order to become a medical professional, but we know our daughter best, so please take your ‘just ignore her’ advice and
Or maybe we said, “We feel strongly that Nora’s symptoms are not for attention, and we’d like to kindly request further testing, please.”
I can’t remember the exact wording.
We requested a blood test to check her white blood cell count and rule out anything super scary, like, I don’t know, belly button cancer (not a thing). The doctor felt this was entirely unnecessary, but, I presume, wanted us to shut the fuck up, so agreed to a blood draw. She warned us that kids her age don’t do well with blood draws, and we reminded her that Nora went through two surgeries before the age of 1— she was a badass and could handle anything.
Except a blood draw, I guess 😬. She was an absolute feral hyena.
But it was worth it. Because when the results came back, it turned out her white blood cell count was completely fine– no belly button cancer here! Her Tissue Transglutaminase IgA antibody number, however, was off the fucking charts.
“Hey, um, wtf is a Tissue Transglutaminase IgA antibody test,” you ask, because you’re not a doctor (although, as evidenced by this story, apparently ANYONE CAN BE). It’s a test done to detect elevated levels of certain antibody proteins, which would indicate an immune reaction to gluten. In an average person with no gluten sensitivity, numbers would be between 0-3 U/mL. Again, in layman’s terms– a normal, healthy number is between ZERO and THREE.
Nora’s number was over 250.
So when I said her number was off the charts, I mean her number was literally off the charts— the chart goes up to 250, and she was beyond 250, so we couldn’t even get an exact number, just a general “well this ain’t good!”
A follow-up endoscopy confirmed a clear diagnosis of Celiac Disease, which is an autoimmune disorder triggered by the consumption of gluten. It is not just a “gluten sensitivity,” it’s a serious autoimmune disease– even the tiniest amount of gluten exposure can onset symptoms (which include abdominal pain, chronic diarrhea or constipation, nausea, vomiting, weight loss, fatigue, depression/anxiety, joint pain, mouth sores, rash, nerve damage– just to name a few! 🤗) and those symptoms can last for days or even weeks. Untreated, Celiac Disease often leads to complications such as malnutrition, bone weakening, infertility, mental health disorders, cancer, and nervous system problems. In other words– scary shit. Shit that I do NOT wish for my child.
Since going on a gluten-free diet after diagnosis, Nora’s symptoms have improved dramatically and her blood work looks significantly better. However, avoiding gluten entirely can be a tricky endeavor, as issues of cross contamination during food preparation and “hidden gluten sources” that aren’t as obvious (i.e. salad dressings, soy sauce, even playing with playdoh) can trigger the disease. We are on a constant journey trying to figure out how to keep Nora healthy.
But this is not a sob story. Clearly. While we hate that Nora has to deal with any kind of lifelong health issue, we are of course grateful she wasn’t diagnosed with something worse. Celiac Disease, can, for the most part, be controlled with vigilance and self-control. We thought the self-control part would be hardest to uphold, but it is incredible how responsible Nora is about avoiding gluten. She is her own best advocate– she will never accept food from anyone, no matter how delicious looking, until she confirms it is gluten-free, and she has, shockingly, never once complained about the fact that she can’t always eat what her friends are eating. We show up to birthday parties and social events armed with our own gluten free pizza and cake (plus an emergency car trough of snacks), which never look quite the same as what her friends are eating, but she could care less. At only 4 years old, she truly astounds us every day with her maturity and flexibility.
But mostly we are just so beyond relieved that she is feeling better and thriving. We know that different phases of childhood through adulthood will present new and unique challenges for her as she manages her disease, but we are so proud to be her biggest supporters and cheerleaders as she finds her way in this often unaccommodating, gluten-filled world.
And we will never “just ignore her” again.**
**Extreme circumstances excluded. Like when she’s being really, truly, indisputably annoying.
The IVF doctor sighed deeply, looked me straight in the eye and said, “You’re very old and you’re quite deformed. There is no point in you having sex anymore.”
Ok, fine. Maybe I’m paraphrasing. It was more like, “Given your age, and the fact that you have only one Fallopian tube, the chances of you conceiving naturally are quite slim.”
But I heard what I heard.
This was back in April 2021, about 7 months after a disastrous ectopic pregnancy that had resulted in a burst Fallopian tube and emergency surgery to remove it and save me from internally bleeding to death.
Eric and I were trying desperately to have one more child (we had always dreamed of two girls, and by we I mean me, and then I convinced Eric it was his dream too) but, given my various mental health issues, I had been staunchly avoiding a trip to the IVF doctor, fearful of what the brutal process would do to me, both mentally and physically.
I have known many brave women who have gone through IVF, and I have always marveled at their tenacity and strength. I couldn’t imagine having to manage the slew of doctor’s appointments, surgeries, hormone shots, side effects, and overall logistics without going completely insane (particularity given that my depressive and anxious tendencies can be triggered by something as benign as a change in routine, or the fact that it’s a weekday). IVF didn’t seem like something I was built for.
But it had been seven frustrating months of natural trying, and while some of you (men. Definitely only men) , might think “Cool! Sex!”, I can promise you that nothing is less seductive than strictly scheduled, position-coordinated sex, followed by obligatory post-coital bicycle kicks (just me, not Eric, although he was welcome to join) in order to get those sperm a swimmin’. All of this culminating in half-upside-down vertical leg-propping on the headboard whilst scrolling social media to pass the 15 minutes those little champions need to find their way to your ancient egg!**
This ritual was not proving successful in making a baby, but while upside-down Instagram scrolling I did come across a useful reel about how to put a tortilla under my nachos as a vessel for all the crumbs at the end, thus creating a bonus burrito. So not entirely unproductive.
The pressure we were putting on ourselves was making us both miserable, and we finally broke down and decided that intervention might be necessary, both to make a baby and to allow us to return to a non-cyborg sex life.
In the weeks leading up to our initial consultation with the IVF clinic, I still held out hope that we could somehow conceive naturally– hope that was immediately dashed when the doctor informed me of the cobwebs in my uterus and the deficiency of my lady parts. Or however he phrased it.
The doctor was confirming my worst fear since the ectopic pregnancy– that getting pregnant again was going to be extremely difficult, and perhaps not possible at all. I could tell he knew his shit (as I like to assume all doctors do), and so I took a deep breath and tried to process the fact that natural baby-making was no longer an option for me.
The doctor walked me through the process. We discussed timelines, hormone side effects, actual chances of conceiving and the likelihood that I would have to go through the process more than once. In more disappointing news, it turned out I would need to have preliminary tests done before even starting IVF, including testing on my one remaining Fallopian tube, which he was convinced was likely blocked with scar tissue from my two previous surgeries, and might have to be removed in order to optimize IVF results. I asked about IUI, a less invasive intervention, but was told that given my ectopic pregnancy, I was a poor candidate. The only way to ensure that I would not have another ectopic pregnancy was to bypass the tube entirely.
Eric rubbed my back as I sobbed.
The doctor was sympathetic and kind, but firm in his belief that we shouldn’t waste time. “Call me on the first day of your next period, and we can get the ball rolling.”
I never got my period.
Instead I got this:
Turns out, I was already pregnant when we spoke with the doctor, but I didn’t know it yet. My one lonesome, rickety tube beat the odds. And apparently, uterus cobwebs are helpful for trapping embryos***.
So for about the 85th time in my life I learned the slightly terrifying (but in this case fortuitous) lesson that doctors don’t know everything– and despite my propensity for skepticism, I had to admit that miracles really do happen.
Here’s mine:
I said miracle. I didn’t say genius.
————————————–
** I consulted an actual scientist who confirmed there is, in fact, no science to this.
Me: “So I’ve noticed since we switched to virtual tutoring, you’ve been takin EXTREMELY long bathroom breaks…”
Kid: “Sorry but I have to go!”
Me: “Ok, well, you used to go to the bathroom when I saw you in person, and you never took this long.”
Kid: “Yeah but that was before coronavirus. Now I have to wash my hands!”
Her: “Like we order from Little Spoon, fresh delivery of organic foods. Or sometimes [my kid] likes the finger foods from Yumi, they’re also organic and they do all these different boxes of mixed foods, they’re great.”
Me: “Oh…”
Her: “So where does Nora like food from?”
The floor.
She likes to eat food that she finds on the floor.
Nora had a second surgery on Monday to remove a cyst that had developed on one of the suture sites, and to remove one of the four silicone slings holding her eyelids up.
Surgeon (right before surgery): “[lengthy explanation of everything he will do, process and risks of anesthesia, post-op care, etc ]….and that’s it. It should be a quick surgery, about 20 minutes. Do you have any questions before we take her into the operating room?”
Me: “Only 20 minutes? So I won’t have time to get an ice cream downstairs?”
Given the various issues we experienced during my last pregnancy and in the past year, Eric and I thought it would be wise and responsible to make a list of factors we need to very seriously consider before having a second child.
Here’s the final list:
Not birthing it during Outer Banks family vacation.
So last I left you, Nora was doing great but sporting a somewhat funky-looking cyst on the corner of her left eyebrow, at one of the sling surgery incision sites (there are four such sites, two on each eyebrow. The other three sites are completely fine and healed, barely visible). Here’s a diagram of the situation on her left eye, for visual learners:
As mentioned previously, the cyst does not seem to bother her at all (except when we have to clean/medicate it), but the problem with leaving it be is that it is constantly opening and reforming, and every time that happens, it runs the risk of becoming infected. That would be crappy for many reasons. I don’t think I need to explain them.
Plus no one needs a cyst permanently sitting on their face. Life is hard enough.
In a last-ditch effort to get rid of the cyst (we’d already tried various topical steroids and antibiotics, to no avail), the surgeon prescribed an oral antibiotic. He hoped that this would do the trick– if not, it would mean that it’s the silicone sling itself causing the chronic irritation, and so it (the sling) would have to be removed.
So Nora took the oral antibiotic and the cyst went away and we all lived happily ever after because LIFE IS RAINBOWS AND BUTTERFLIES AND UNICORNS THE END!!!!!
Bwahahahahahahahahh jk guys. But you knew that.
You’re on MY blog, not [insert name of someone I’d hate]’s blog.
Life never gets tied up in a neat little bow, so here we are at the next boulder in the road. Get out your chisel. (Is that what one uses to break through a boulder? Listen I’m not outdoorsy nor have I ever used a tool).
The cyst remains. And while we’ve grown so used to it that we’ve considered giving it a name, starting a college fund and raising it as our own, the doctor feels it needs to go. And the only way to do that is to remove the sling (you know, the one holding her eyelid up).
So we have another surgery scheduled for Monday. Yes, this Monday. July 22nd. Because some people go to The Hamptons in the summer, but honestly we prefer the bright florescent lights of Children’s Hospital of Philadelphia, Day Surgery Division.
Same doctor. Same hospital. Same general anesthesia. Same crippling anxiety thought spirals of hell positive attitude leading up to it.
The doctor seems hopeful that because there are two slings in the eyelid (refer to professional diagram above), the inner sling will be sufficient in keeping the lid up. If the lid DOES droop, to the point where it could affect vision, he will be able to discern that mid-surgery, and we will then have the option of putting in a replacement sling in a slightly different location (all this can be done in that same surgery). The downside to this is that Nora will then have three incision sites in that one brow. And, of course, the chance of another cyst-like reaction at the new incision site.
The good news, again, is that the surgeon seems confident that the one remaining sling will suffice (especially since this was the better, less droopy eye to begin with), and that removing the troublesome sling is not going to affect the cosmetics, or her vision, at all (then why did he put it there in the first place? Standard procedure? Slightly better chance of symmetry with the other eye? IDK guys I guess I missed the day they taught that in the medical school that I didn’t go to). Furthermore, he feels that if he DID have to put in a replacement sling, the likelihood of a cyst forming again is small, especially since the other three incisions healed so nicely.
His confidence seems promising, and the odds do seem to be in our favor– however, this is only the THIRD time in his TWENTY YEAR career that he has had to remove a sling, so I’d say my faith in odds right now is akin to my faith in Eric’s hair-regrowth shampoo.
Thankfully, Eric remains positive and hopeful (regarding both the surgery and his hair), so I don’t have to. This is a marriage strategy and not an accident. It’s written in our ketubah: “In sickness, and in health, Emily will constantly assume the worst and Eric will keep the entire ship afloat by himself, so help him God. He’ll also get Emily iced coffee and egg salad and never comment on how much she’s sweating.” It’s all there in Hebrew.
So that’s where we are. One of the four silicone slings will be removed on Monday. The surgery is slated to take 120 minutes, from prep to finish. I will eat my feelings next to the hospital’s frozen yogurt machine, which likely still has my chicken-nugget-greased fingerprints on it from February. Eric will wander around introducing himself to various dogs.
Nora, I assume, will handle it better than both of us, because she’s still zero years old and life is just a series of eating, pooping, and maniacally swaying to Queen:
And I’m sure all this hardship will make Nora stronger, and it will all work out in the end, just like it did for Freddie Mercury.
No, I’m kidding. Obviously. I DO believe this will all be fine, I’m just sorry my sweet little tater tot has to go through this. AGAIN. I’m not necessarily confident that this is the last time we will deal with this issue, but I AM confident we’ll be able to look back one day and this will all seem like a distant memory and a minor roadblock. I know that day will come, because, no matter how hard life has been at any point, and no matter how hopeless things have seemed at any given moment, a good dose of distance and perspective has always made the value of the struggle seem crystal clear.
But right now it’s surgery-anticipation mode, so I’m sorry, I’m just not there yet. But I will be.
And until then, I’ll cope in same way any other loving, caring, fiercely devoted mother would.
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