charlie and the ‘ologists

I posted a bit of an update in the comments:

Today he had an endoscopy, for which he had to be under anesthesia. Horrible. He has seen a cardiologist, an immunologist and allergist, a gastroenterologist. He’s had a swallow study, a brain scan, an EKG, a cardiac ultrasound and EVERYTHING checks out normal. We are on the waiting list for feeding therapy. It’s a four-week inpatient stay. I’m sort of falling apart.

Here’s a bit more on all that.

Another Day, Another 'ologistWe go to lots of doctors appointments. Sometimes three or four in a single week. And every doctor, every procedure – they’ve all lead to one dead end after another. Immunologist, Cardiologist, Gastroenterologist, Oh my.  Charlie’s endoscopy revealed that while he may have a bit of reflux, that’s not the source of his refusing to eat. His innards look lovely. His cardiac ultrasound revealed a beautiful ticker, ticking away just as it should. The gastroenterologist believes his problem to be wholly unconnected to his digestive system and is ready to release us. To a neurologist. For more tests.

The ‘ologists in general have been a parade of frustrating and sometimes infuriating interactions. One didn’t listen to my voicemail about a lab error because he’s “not a fan of parents looking stuff up on the internet.” No, I’m not kidding. Another helpfully suggested that perhaps “god and time” might heal my son.

God. And time. I looked around the room to be certain I was in a doctor’s office and not a chapel.

UntitledThrough all of this, I have tried to drag myself out of the fog of stress and worry to crack a few jokes and take comfort in the fact that our son is healthy and happy. He just eats through a tube in his nose. But one non-answer after another and I’m at a place where I want to scream, MY SON EATS THROUGH A TUBE IN HIS NOSE! And although inpatient feeding therapy sounds extreme, Charlie hasn’t eaten in nearly two months and we believe that this is the best way to undo old habits and form new ones – and hopefully, a positive association with eating.

Some days, I feel that all I am is my son’s disorder. Which, from talking to another mom of a kid with special needs, is a pretty common feeling. Some days you’re just drowning in it. The worry – over his long term well being, over your shorter term financial struggles, over your own inability to help your child with such a basic need. I feel so powerless. I can’t plan or make real decisions, only react to the ever changing demands of my tiny overlord. Whom I love so much.

I owe some of you some thank you’s for the kind donations – I cannot tell you how deeply I appreciate it. I swear I’ll get caught up on my mail this week. I think we have a break from ‘ologists until next Monday.

it’s a long story

Waiting for the Doctor The Nurse Who Put This Tube in Deserves to be Kicked in the Lady Parts

It’s a long story, how we got from here to here in the span of 24 hours. I’ll try to sum up.

Feeding Charlie has never been easy. And by the time he was 10 weeks old, we’d seen the doctor for it more than a half dozen times, been on two different acid reflux medications and three different formulas. By the time he was 12 weeks old, each feeding was taking upwards of two hours – and he hated every minute of it. Still, no one seemed in any real hurry to solve our problem. After all, he was gaining weight, meeting his development criteria. He was happy.

Untitled Untitled

I quit my job to care for him. No part time, no nothin’. We couldn’t afford the kind of caregiver that would spend two hours out of every three feeding our baby. We finally insisted on seeing a specialist, who ordered a swallow study – he was convinced Charlie didn’t have reflux, he just couldn’t swallow properly.

Within 12 hours of our visit, Charlie stopped eating altogether. The doctor on call at our pediatric gastroenterologist called the hospital emergency room and arranged for a bed. We packed up Charlie and headed to Medical City, knowing we’d come away from there with a feeding tube. The experience was, at times, nothing short of awful.

The One Worst Day of My Life First Father's Day Sarah Elephant, Charlie, Hospital

The nurse in the emergency room took an agonizing amount of time getting the tube in Charlie’s nose. I had to leave the room and go for a walk. When I returned, she was still at it. He cried for nearly four hours straight afterward. So did I. And knowing full well they were not going to let us leave the hospital the next day until I learned to put his tube in, I was miserable with anxiety. Turns out, I was a quick study and had the unpleasant task done in seconds. Seconds! After spending the Dork Lord’s first Father’s Day in the hospital, we were released.

The next day, we had the swallow study that the specialists were convinced would reveal our problem. It did not. Charlie swallows beautifully, and we were back to square one. This week, we have blood work (I’m dying inside at the thought) and a neuro-sonogram, which will rule out (hopefully) and problems with Charlie’s brain. In the meantime, our little non-eater is being fed through a tube… and his new magic, special formula runs a whopping $155 a week. Good thing I quit my job, huh?

Untitled And good thing he’s so darn cute. The cause and the cure for my stress.

two months

One day, I hope to be able to take the time to do each of these topics justice. But since I started this a month ago, and it remains unfinished, for now, I’ll try to sum up before Sir Poopsalot wakes up and, well, poops. I’ll try to provide updates throughout but, well, babies. They wake.

Baby Boy, Two Months Old Charlie is the most pleasant baby. He’s still a baby, so he’s a crazy ton of work, but lordy, did we hit the kiddo jackpot on this one. Once he starts sleeping through the night I’ll probably be even crazier about him (update: he sleeps through the night. It is magic. Better than magic. He also smiles and coos and is on the verge of out and out laughter), but even that’s hard to imagine. Also, he’s gorgeous. And has a very lovely, fuzzy head. I also hit the husband jackpot. The Dork Lord is a very, very good and very natural father. Listening to him give Charlie the play-by-play during a Mavericks game in his sing-song daddy voice gives me such amusement – and also this deep sense of happiness and peace.

Daddy on Duty

Postpartum depression was the darkest, scariest thing that has ever happened to me. I stopped sleeping, couldn’t eat, and sobbed endlessly over what I was convinced was abject failure at motherhood. I believed, most ardently, that my son deserved a better mother and that I had made a very grave mistake trying to be a mother. It hit with such force and suddenness, too – quite literally overnight. For a while, Prozac made it better, until Prozac made it lot, lot worse. Then it got really scary. Because then, in the span of one afternoon, I began to feel like I was dying. I was afraid I was dying, actually. And simultaneously, I was afraid I’d have to live. I never wanted to kill myself, but I didn’t want to be alive. I only believe that distinction is important because when answering the question, “Are you afraid you might harm yourself or the baby?” my immediate and honest answer was always “Of course not.” I’m glad I never got to the place where I had to stop to consider my answer more carefully. Update: I’ve now been to the hospital twice for a severe allergic reaction to Zoloft so now we’re giving Lexapro a shot. Here goes nothin’.

Trying and failing at breastfeeding was a miserable, miserable experience. Despite the help of an expensive lactation consultant and trying every which way known to man, Charlie would not latch. He could not – his palate was simply to high and his mouth too small and as the weight slipped off him, I continued to try and fail and blame myself. It wasn’t until I was in the throes of depression and my mother came to stay to care for Charlie that he really began to thrive – on a bottle. Update: at our two-month check up yesterday, Charlie had gone from 9th percentile in weight to 39th. I think we’re doing something right. Also, he’s in the 95th percentile for length, so his daddy is fostering some pretty high hopes that our son will be a baller. He’d better have inherited his father’s coordination, is all I have to say about that.

Bath time I love being a mother. When I was deep in postpartum depression, I was overwhelmed by feelings of remorse – that I’d made a terrible mistake having a baby. Not that Charlie was the mistake; his absolute innocence and perfection made me feel like a monster, unworthy of this new job. Getting help was the best thing I could have done for all of us. The Dork Lord said at the time that medication wouldn’t make me a good mother. It would let me see I already was. He wasn’t wrong.

an early delivery

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Charles William Hunter Griffith

Born March 9, 2014 7:20PM
7lbs, 4oz
20 inches long

Handsome as the day is long. And it turns out, the day is really, really long.

But also really, really awesome.

twenty days

With less than three weeks until the Wee Dictator is due, we’re in a bit of a state of turmoil at our house. A dozen unexplained bug bites over a few nights in the last couple weeks turned into a panicked call to the exterminator and one freaked out mama-to-be.

You cannot bring a baby home to a house with bugs! Those people end up on the news! And not in one of those feel good stories they run after bits about gang violence and terrorism, either.

My first inclination was that we had fleas. Our feral cats have become indoor/outdoor cats over the course of the winter (they’re not dumb) and they love to sleep on our bed (see: not dumb). Although they’re flea-treated, I thought fine, maybe I miscalculated their last dosage. Maybe they could *possibly* have brought something inside. Seemed logical.

My ultimate fear was bed bugs. Horror of horrors! Neither of us travels, though, and there’s nothing new in the house that could have transported them. I mean, that doesn’t necessarily rule out the possibility, but the pest control man seemed utterly befuddled, having found zero evidence of any kind of biting pest, flea, bedbug or otherwise. Our stark white mattress is, well, stark white. Same with the bedding. An in-depth investigation yielded only more nothing. Nothing but frustration. The exterminator left without having exterminated anything or rescuing me in any sort of way, except for providing a set of instructions for some proactive measures we could take. And boy, did we take ‘em. I’m having none of this risk taking. I’ve washed every bit of everything in hot water, the Dork Lord has sprayed the room, the mattress has been covered, bug boards laid and blah blah blah.

It’s ultimately a lot of stress that I didn’t need. I think the worst part for me is that I’ve worked so stinking hard to make everything as perfect as possible for Charlie’s arrival and then…this. This thing I cannot control. And if you know me at all, you know that I’m not so good with things I cannot control. They are my nemeses. My Khaaaaaan!

I haven’t cried yet, but let’s not rule it out.

Also, now I just itch all the time. Out of pure suggestion. Meanwhile, the only thing our sticky bug traps have caught is an unfortunate dust bunny. And Midge once. But that was funny.

By way of a Hal update: He’s doing remarkably well. He still seems completely unaware that there is anything wrong with him. His appetite is up and his weight has returned to normal. He sleeps a lot, but, you know, he’s a cat. And that’s sorta their modus operandi. Having grown accustomed to his daily medication routines, Hal even voluntarily jumps up on the counter while I glove up (being pregnant, I’m not allowed to touch any of his meds). I’m guessing that his willingness has little something to do with the treat he gets after. Like his mama, he’s compelled by food. Outside of his daily meds, it’s very easy to pretend there’s nothing wrong with him. So I do.

And a word or several on Charlie: Kid’s head down, ready to go. I’ve asked him to be born a few days early on the 16th (it’s a full moon, after all, and babies love to be born on full moons), and I’ve decided that whether or not he complies will tell me everything I need to know his personality. Come on, Charlie. Do this for mommy. She wants to roll over in bed without her whole skeleton hurting. I’ve also asked him to have a reasonably sized head. Please, oh, please.

NurseryPano

Thank you most sincerely for all your good thoughts and well wishes with regard to Hal and Charlie. So far, so good! And uh, if you’d like to direct some of that positivity at the bug situation, well, I would not object.

Scratch, scratch.