Bless me readers, for I have sinned. it has been at least a month since my last entry. I'm sorry for causing some of you to worry unnecessarily. A lot has happened between then and now. But, with any luck, ya'll are bored silly and willing to read thru all of this. I'm not going to lie and say the last five weeks have been all sunshine and roses. They certainly weren't. I've been avoiding this blog out of fear of it becoming a woe-is-me soap opera. I didn't feel it fair to Little Bird for me to come on here and complain about the driving urge to stick my head in the oven. Besides, this is something I've come to expect. Aftershocks from March. I just never expected them to hit so damn hard. But I'll talk about that later. First, the good news.
Aside from the occasional panic attacks she's been causing us all to experience, Little Bird has been doing remarkably well. I'll start when I previously left off, which was Easter. That Sunday, our little prankster decided to celebrate by decannulating herself. She's not yet able to undo the trach ties themselves, but she has since demonstrated that she can certainly pop her piece out, leaving it to lay just under the cloth straps, and giving the appearance that it's in place when in fact, it isn't. Thank God for monitors, and a quick-thinking team of staff who has become so accustomed to her antics that they can now perform chest compressions at the drop of a hat. But alas, they didn't give her the nickname of Princess of the PICU for no reason.
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| "Who dat?!" |
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| Chillin' With Her BFF Kristen! |
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| And Her BFF Megan! |
As if a full-on, unwarranted, cardiopulmonary event didn't garner her enough attention, the following week, she decided to do her surgeon a solid. This little girl is a hell of a lot smarter than anyone gives her credit for. She may sit at the nurse's station, and ever so innocently smile at those doctors, but truth be told, she understands every single word they say. This, she proved after partaking in a discussion with them concerning the infection that had been brewing in her central line. Her inability to fully shake the tracheitis that had been plaguing her for more than a month by that point led them to debate whether or not the Broviac should be removed. They hadn't quite decided yet, either way, when she did. In the forty seconds that it took her nurse to walk from Little Bird's bedside to the refrigerator in the hallway, and retrieve the few milliliters of formula for her scheduled GT feed, our little Houdini yanked this catheter right out. Of. Her. Own. Heart. She didn't flinch. She didn't cry. She didn't even bleed. She just kinda of sat there, so proud of her own self, and beaming from ear to ear. Completely. Fearless.
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| "Cute Bunny!" |
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| "Creeeeepy Bunny!" |
So, out with the old, and in with the new. PICC line, that is. The next morning, she had another one inserted in her right arm. Because she still requires TPN, and because her veins are also now shit, they needed a main port in order to deliver the bulk of her nutrition. MFH and I took notice to her predominantly using her left arm ever since. We're not quite sure if this is nurture over nature and because of a sensitivity to this new catheter, or simply just her own preference. Either way, we wouldn't be surprised if she ends up ambidextrous. One of her brothers is, and it's so interesting to witness a little bit of each of her siblings show thru her personality.
And what's a piece of tubing compared to ninety percent of one's digestive system? She's been thru enough to know that by heart. Speaking of digestive systems, hers is healing rather nicely. Wait. Let me rephrase that. Little Bird is an effing medical phenomenon. Albeit slowly, her GT feeds have since increased to twelve milliliters every four hours. Not quite a half an ounce, but you'd be surprised. Because Little Bird isn't exactly so little any more. Weighing in at a wonderful seventeen pounds, she is a chunky dunk! Her rolls now have rolls, and I am in awe of every single one of them. Back in March, when she got sick, she'd lost so much. Her belly. Her second chin. Her chipmunk cheeks. I was worried sick that simply gaining that back would be too much on her. But once again, she proved me wrong, and exceeded my wildest expectations. But that's not even the half of our cause for celebration. Not long after she was born, I kindly told the NICU staff that they could shove their percentile charts up their asses. She'd grow at her own pace, not at what some stranger expected from her. For the first time since then, curiosity got the best of me, and I decided to inquire about where she stands. In terms of being a micro-preemie, she's in the eighty fifth percentile for her adjusted age. But that's nothing. Because according to the full-term chart, she's holding steady at ten percent.
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| "Everybody's a comedian 'round here..." |
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| PICU Swagga |
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| "I said the black Corvette! And make it snappy!" |
Little Bird is exactly where she should be. When you think not just of the circumstances she was born under, but also the severity of her setbacks, this is ah-mazing. And this doesn't only pertain to her growth. She can now sit upright, unsupported. At an adjusted age of seven months, she's completely on target physically, too. She reacts to strangers, and easily recognizes familiar faces. She can roll from her back to her belly, although she shouldn't because of the trach. But she still attempts it, especially when she's wrastlin' the sleepy monster. She's also been workin' on her leg fitness, and regaining some of the muscle tone that was lost two months ago, as well. This is where being mechanically dependent becomes the biggest burden. Because I'm seeing for myself that if it weren't for the machine, she'd be mowing people down in a walker right about now. However, we decided not to inflict the kind of torture that is chasing after a vent'd kid on wheels upon the staff. We're settling for shopping for a new jumper seat, instead.
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| "I look gooooooood!" |
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| "Mmmmm! Bubble bath!" |
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| Facepalm! |
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| And A Manicure! |
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| Patiently Waiting For Her Nails To Dry |
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| Clearly, She's Gaining On Us! |
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| A Remote Control Away From Being 85 Years Old |
She hasn't yet sprouted any teeth, but we are watchfully waiting. I think it might be at least a few more weeks before she does, but it certainly is about to happen. She's been drooling like a Saint Bernard, and continues to chew on everything and everyone within her reach. And her hair! Holy hell! Her hair! They had to shave so much of it to make way for scalp IV's. I feared she'd be forced to sport hats all summer in order to cover up the Mohawk she was left with. But it grew back completely, and curly! Just like her kid sister's, and also now just as dark. It totally suites her, dont'cha think?
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| Lights! Camera! Action! |
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| Hell Hath No Fury |
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| Who Need's A Bink When You've Got 8 Feet Of Vent Circuitry? |
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| Sporting The New PICC Line |
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| I'm Seeing A Pattern Here... |
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| This Smile Can Cure Anything |
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| Baby, You're A Superstar! |
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| Da Munkay! |
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| Sweet Baby Curls! |
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| Still Hasn't Grown Into Those Eyes, And I Hope She Never Does! |
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| Fishy Kissies! |
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| "You can let go, Daddy. I got this!" |
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| The Sleepy Monster Finally Caught Her! |
Aside from purposefully left-out details about the "H" word that the staff's been chattering about a lot recently, that basically sums up the last month for us. I really don't want to go there right now, and sully an otherwise positive post. I suspect another sleepless night over this topic, anyway, so perhaps I'll manage to squeeze in the details on a separate entry. For now, let's just enjoy the awesomeness that is Little Bird's photos.
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