After Amelia was born and it was determined that there was some sort of issue with her head and brain (bright spots, although excellent on jewelry–think diamonds–are not something, apparently, you want to see on an MRI), I could barely watch that commercial with Alec Baldwin and the brain. Nor could I watch House, MD without having to avert my eyes whenever the picture of the brain came up in the credits.
Neurotic much?
Why yes, yes I was neurotic. I was probably as bat-shit crazy as I’ll ever be (God willing) and there’s a small part of me that feels as though I should be apologetic for it. Things did, after all, turn out as well as they could, especially considering the diagnosis.
But I’m not sorry. Not even remotely. Since I hadn’t thought there was an actual encephalocele, I’d actually prepared myself for a better Worst Case scenario than. Which means I wasn’t nearly as neurotic as I could have been. How frightening is THAT?
Besides, from the moment she was born, no one told us jack SHIT about anything. It was kind of remarkable, just how little information the hospital and it’s employees would divulge. I probably could have learned more from the lady who cleaned my bathroom than I did from all of the nurses and doctors. COMBINED. My friends who have been there will know if that’s standard or not, but damn, how powerless did we feel?
Moving right ahead, now that my neuroses have been well documented yet again. (If that’s not the purpose of blogging, I don’t know what is)
Amelia turned a whopping 2 months old on the 28th of March and we celebrated, perhaps a bit belatedly, by going to back-to-back doctors appointments. Lucky girl!
Before we went to her pediatrician yesterday, I had a rare couple of quiet minutes wherein I waxed eloquent (If Aunt Becky waxes eloquent and no one is around to hear it…? Did it happen?) about how relieved I am that this is my last child. With my other two, even with Ben’s autism, I was much more laid back and relaxed.
So what if Ben ate from exactly one food group (White Food, for those who wonder)? Who cares if Alex didn’t walk until 16 months? That rash on his ass? Slap some Vaseline on it and call it a damn morning.
But suddenly, after Amelia was born and the threat of her developing abnormally was a Front and Center Issue, I consistently noticed things about her. Wait, she’s rolling her eyes into the back of her head as she sleeps, IS THAT A SEIZURE? Oh my GOD, what is WRONG with her hard and soft palate? IT LOOKS WEIRD.
From neurotic to MORE neurotic, I quickly went.
Until yesterday, when I went to the ped with her and I had an epiphany (ala Arby’s = RB’s = Roast Beef! What? I never claimed my epiphanies were bright.). My daughter seemed…normal. Completely normal. She eats well, has regular craptastrophies wherein several items of clothing are damaged, smiles when she’s happy, pouts and screams when she’s mad, and acts just like a…baby.
MY baby.
Maybe she’ll never join MENSA (to be fair, they’ve certainly never beat down MY door either), maybe she’ll have as hard a time with fractions as her dear old mother does, and maybe she’ll never be known as a Brilliant Mind.
Say it with me now: So. Fucking. What?
Today, at her follow up with with her neuro (F/U in medical lingo. Which always brought me much satisfaction to see in a chart when I was an actual nurse because I am very, very mature) she was discharged from the neurologist who told us that we’d see him in the next lifetime. Which may be entirely too soon for me.
Next week, we’ll be visited by the county health nurse who will follow Amelia for the next two years to determine if she’s meeting all of her milestones. We’re also being followed by the University of Illinois. Apparently her diagnosis is not only rare, but totally interesting!
And they’ll probably find something, because if you look for something long enough, you’re bound to find something or another wrong. But I don’t care.
Normality is totally overrated.
Because we are all about consolidating here at Casa de la Sausage (plus girl) my GP is the same as our pediatrician. He’s an Old Skool former military doc which means he’s incredibly no-nonsense kind of guy and for that I love him. But since I delivered Amelia at a hospital that he doesn’t have privileges at (likely by his own design), we were seen by another ped. Rather than transfer everything over to my GP after we were discharged because we are also lazy, we’ve been having Amelia see the doc she saw in the hospital.
Man, that was a long and boring paragraph. But it has a point!
This week I had to follow up with my GP after my dosage of my anti-depressant was tweaked just to make sure, I guess, that I wasn’t going to kill myself OR others (and if I had, thanks to my incredibly helpful OB nurse, I’d have gone IMMEDIATELY to the ER. Because that’s what suicidal/homicidal people do. They behave rationally! Because suicide and homicide are both REALLY rational things to do! Obviously!). And because I am an incredibly wonderful daughter, rather than saddle my mother with all three of my children, I took my youngest along with me.
(complete aside! You know you’ve been to the doctor WAAY TOO MUCH when you actually notice that all of magazines are ones you’ve seen already! Like Audubon Monthly! Although I don’t read them, preferring to stare vapidly into space, I like to see different things at different offices)
The point of that insanely boring first paragraph is that my GP had not yet met my daughter who will become his patient (arbitrarily) after she is (hopefully) discharged from the neuro. So, because I am that kind of patient–you know, the kind that wastes the precious time of busy doctors–I immediately showed him the back of her head and told him all about Amelia’s encephalocele.
He examined her and told me about one of the saddest stories I’d heard in awhile. Sometime in the 70′s or 80′s, he’d gotten a call from an OB asking him to come to be at this C-Section. The OB suspected a problem with the baby, but without the fancy diagnostic tools we have now, he had no idea what the problem WAS.
Well, it turned out to be a mighty encephaolcele stretching from the top of the head to the nape of the neck.
As you can imagine, the baby didn’t make it.
This was the beginning and end of the experience he’d had with my daughter’s diagnosis.
And this reminded me of how amazing it is that any of us turn out as well as we do. How often things actually go RIGHT.
And what a fucking miracle Amelia is. Needless to say, I’ve been holding all of my kids a little tighter.
The pictures, they speak for themselves:
AW! Lookit! Alex is FEEDING THE BABY! What an awesome big brother!
Oh, and there he goes, trying to pick out her eyeball.
Kids. I tell you.
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To answer your burning questions, I present to you an abbreviated post! Hooray for small bits!
So, why the hell didn’t the doctor tell you about the encephalocele?
Honestly, I don’t know. I’m not sure if the whole litigation-happy climate made him wary of telling us anything before he knew for sure or not. I’m feeling much better about it today after being nearly bowled over by the news yesterday. Dave, predictably, handled it much better.
We went into surgery thinking that this was fluid-filled, which in retrospect, makes no sense so the news that there were actual glial cells inside that pocket was completely shocking to me. And it made me feel oogly inside.
Kinda creepy when you think about it.
Well, what does this mean for her development?
No clue. She appears to have all of her mental facilities intact, but she’s only 5 weeks old. The age when they sleep, poo and eat exclusively. So measuring milestones is an impossibility at this moment. She does eat, poo, sleep and wiggle which is a good sign. And when she looks at you, the lights appear to be on and someone appears to be home.
We have been flagged by the county (her diagnosis, not my shabby parenting) and will be followed by a public health nurse. That in addition to my own nursing experience ought to be able to ascertain any issues as they arise (or don’t. Let’s hope) and get her into proper treatment as needed. We’ve had much experience with Early Intervention, so I’m not scared of that.
We’ll handle it either way.
How are Alex and Ben adjusting to their sister?
Shockingly well, truth be told. Alex is a consummate Momma’s Boy and I was most afraid of how he’d take to having to share my attentions, but so far so good. Providence smiled upon us and we were able to enroll him in some in-home care 3 hours a day after my neighbor recommended her sitter. Who is awesome.
This seems to help.
A couple of months before Amelia was born, we’d bought another doll for Ben, who is nurturing it and loving it just the way he did with his first doll (bought when I was pregnant with Alex). Yes, my son plays with dolls and no, I don’t think that’s stupid. He may be a father some day and I want him to know that men can nurture as well. He’s loving having another sibling.
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Anything else I failed to answer? My brain is mushy and stupid right now (okay. My brain is always mushy and stupid. I admit it.) so ask away.
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