The Graduate....

Congratulations Vinny!

On Thursday evening, my oldest daughter graduated. From sixth grade. Pomp and circumstance, and chock full of hormones. Number Four met this milestone with much trepidation, but then again she's never been very big on change. Alas, it was meant to be, and she will soon head off into the great unknown that is the seventh grade. Our district doesn't have a separate middle school, so technically, she's now a high-schooler. The little fish in the big pond. It's strange to witness all of this happening thru her perspective. When I was her age, I couldn't wait to get my ass mixed up with the upperclassmen. There were shenanigans to be had, and I knew it. My daughter is much different. Don't look at me! Wait. Maybe it is my fault. She's heard a lot of stories . Maybe there really is something to be said about reverse psychology after all. 

Her elementary years went by so quickly. Too quickly. It seems like only yesterday that we were plotting our great escape from the building on that fateful day. Did I ever tell you guys about her very first day of school? I didn't? Well, I suppose it'll be much less embarrassing than me posting those naked bath time pics....

I didn't ship Number Five off to preschool. She was the baby, and supposed to be the last one. I wanted as much time with her as I could possible have in order to get a jump start on countering some of the mood swings that I now find myself facing with her. One extra year to influence and connect with her before having to relinquish her to the pressures of her peers. She'd have the rest of her life to learn how to push my buttons and proclaim how miserable I make her. One extra year to remain the apple of her eye, rather than some cootie infested, stinky boy that neither MFH or I will ever approve of. In hindsight, I should have sent her sooner. This is why. 

Number Four can be pretty shy. Throughout that last summer together, we talked a lot about making new friends, and how much fun riding on the school bus with her big brothers was going to be. By the time the night before the big to-do rolled around, she was pretty pumped. She was going to march right onto that yellow behemoth, smile really wide, and say hello to the first of many friends she would make. We woke up early, and spent a lot of time picking the perfect outfit (as these were the pre-dress code, uniformed days), and dolling her up for the occasion. Once all four were buttoned, zipped, combed, and brushed, we headed across the street to the bus stop. 

We saw the bus making the turn onto the street, and I hurried to make sure my camera was ready. That all-important, first step aboard, as well as a few more of her waving from her window seat. Yeah. It didn't happen. What did was a massive meltdown so dramatic that we ended up having to beg the driver to go ahead and pull away. I don't want to go to school! Please don't do this to me! You're my favorite parents! 

After ten more minutes of this, and an epic struggle to get her into the car, we arrived, quite disheveled at the school's entrance. Where MFH and I had to take turns prying her out of the backseat like a cat trying to desperately escape a running faucet. Several teachers and parents stared at us. I'd like to think this was with sympathy. But, truthfully? They probably thought we were simply insane. Couldn't have blamed them if they did. 

Eventually, we managed to manipulate her into the gymnasium, where the rest of the little heathens children were being corralled seated. There, we found so many of our own peers desperately running from the building cooing and oooohing and ahhhing over such ridiculousness precious little faces. We quickly found our daughter's class's spot on the bleachers, as well as a pretty stabile looking, blonde haired girl. And we wasted no time parking our kid next to her. She looked pretty normal to us. Turns out, she ended up becoming one of Number Four's closest friends. 

MFH and I shook the teacher's hand, wished him the best of luck thanked him, and hauled ass out of there as fast as our legs would carry us. By the time we got home, I really needed a beer. But the guilt would have killed me. So I decided instead to go pick up an ice cream cake. My Little Pony. Nothing says 'I'm sorry for the dump and run' like rainbow colored frosting, and a few years of therapy. I came home from the grocery store, shoved the cake in the freezer, and sat at my desk, crying. For the rest. Of. The. Day. Number Four, if you are reading this, go right ahead and feel bad. You made your mother cry. Are you happy now? 

When it was time to go back across the street and play Will She Or Won't She Boycott The Ride Home, my stomach was in knots. Seriously, I was thinking the worst. What if she refused? What if she got on the wrong bus? Oh my God! What of the ice cream cake which was then awaiting her on the dining room table melted? I was not in the mood for a milkshake. 

Suddenly, the bus rounded the corner at the top of the hill. And I waited. And waited. And waited. Because there was two other stops before ours, and somehow, it never occurred to me how slow these little Kindergarteners can be. Or how many of them forget their book bags. Or lunch boxes. Or that one last high five or hug with their friends. Finally, it was our turn. Number One was the first kid off, damn near tucking and rolling before it even came to a complete stop. Followed by Number Two and Number Three. And then, there was Number Four. Not hysterical like she'd been six hours earlier. Like I totally expected her to be. But smiling. Skipping, and waving to her friends, and politely thanking the bus driver before exclaiming to me what a wonderful experience she'd just had. Go. Figure. I wasted twenty bucks on a guilt-laden, sugar coated surprise for nothing.

The moral of that story is to never waste your money on the ice cream cake. The beer would have made for a more interesting and happier afternoon. Oh, and that kids are pretty resilient little people. And, that our time with them is so fleeting. Before you know it, they turn into young women (and men), and you will wish for nothing more than the plans they've made with their friends on the weekends to fall thru, so that you could spend just a little bit more time with them. If you've got 'em, enjoy 'em. Because sooner or later, we have to let them grow...

...Wait 'Till They Get A Load Of The Next One!

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First, Do No Harm.....

When we started the vent program, MFH and I made a promise. To each other. To Little Bird. To our medical team. If at any time, or any reason, we didn't feel absolutely comfortable in our ability to give Little Bird the standard of care that she deserves, we would be the first to admit it. From that day forth, whenever we accomplished any aspect of medical training or instruction, we were always asked. How confident do you feel? In the early days, we hovered somewhere around twenty percent. Then, slowly but steadily, our self-assurance began to grow. Fifty percent. Seventy five percent. Ninety percent. It wasn't until the day we completed the car trial were we able to say, beyond the shadow of any doubt, that we were both ninety nine percent certain that we could bring our daughter home, able to completely handle her posse of mechanical interventions and devices. We will never say a hundred, because we will never be that sure. We know Little Bird well enough than to ever let ourselves be so cocky.

The aftermath of March 11th took away so much from this family. We've been reeling ever since. Spinning uncontrollably, and desperately trying to regain our equilibrium. Frustration, confusion, and devastation deduced eight months of progress into nothing more than a measure of days on a calendar. We weren't pushed back to day one. We were so far beyond even that, to the point where Little Bird's first few hours on this Earth would have been a stronger foothold on the situation. Every single aspect of the eight of our lives had been affected, and in ways we never imagined were possible. Little Bird lost her intestinal tract, and we lost our minds. By the time reality set it, we became so crippled with fear that we didn't even trust ourselves. She needs her diaper changed, let's buzz for a nurse. She needs to be suctioned, where's the call bell? She's due for a trach change tomorrow. Do we have to do this ourselves? 

I don't expect very many people to understand all of this. Not very many at all. And if you don't, you are very, very fortunate. Because it means you've never had to witness human suffering on a level so profound that there aren't even adjectives to properly describe it. You've never had to stand back and watch a team of people conduct chest compressions on your baby. You've never had to feel your daughter squeeze your finger with such ferocity as a nurse was packing her belongings into clear, plastic bags. You've never witnessed that look on her surgeon's face. That apologetic look of defeat. Be grateful for that. Count your blessings. And read the rest of this post with an open mind. But remember. We aren't putting this out there because we want opinions. Frankly, only one person's matters to us anyway.

Little Bird is pretty amazing. This, we've known. Even at her very weakest, she is the strongest person I will ever know. She's got a wicked sense of humor. She is fearless. And she is also incredibly determined. She's spent the last several weeks proving western medicine wrong, once again. The little girl who, for all intents and purposes, isn't supposed to even be here right now but gave the specialists in Pittsburgh the big eff you, and has made her stance concerning a once-upcoming Bianchi procedure crystal clear. No more boo-boos. In what can only be described as quite possibly the most remarkable recovery known to mankind, as it turns out, she does not need any foreseeable lengthening. This is something that MFH and I are still dumbfounded by, as is her surgical team and gastroenterologist. She's managed to somehow pull another rabbit out of her diaper, and already accomplish healing to such an extent that all predicted surgical interventions have been hereby postponed indefinitely.

Of course, she's also only human, therefore still requiring total parenteral nutrition for the time being. However, she is now half way to her goal amount in which we can begin to hopefully ween her down and completely off of the pump. Quite an incredible feat in such a short amount of time. Truly amazing when you consider how heavy the odds were stacked against her. Imagine, if you will, how speechless we were to find out a few days ago that she can be released to come home within the next three weeks.

Sounds pretty spectacular, doesn't it? It should. Maybe it would, if it weren't for the fact that MFH and I are idling at roughly nineteen percent confidence in caring for her ourselves. And so, when Cathy (our social worker) asked us how prepared we felt, we kept our promise. We told her the truth. That we are scared shitless. That we are no longer comfortable with so much as picking Little Bird up without the assistance of our nurses. That we love her too much to ever dare compromise her life.

I've repeated this ad nauseum on this blog. But, one more time for the cheap seats. As long as she is ventilator dependent, it doesn't matter where she is, Little Bird will remain classified as a critical patient. And that is just the vent. Add to it the trach, and the G-tube. And now? A PICC line and a TPN pump. I am not Super Mom. Not even close. Having six children to raise is difficult. Knowing that the only thing that stands between my youngest and the hereafter is a few well-placed tubes, a bit of education, and someone inadvertently forgetting to wash their hands? Makes for one, big, unexpected, grown-up moment.

Theoretically, MFH and I can get in the car right now, drive to the hospital, and bring Little Bird home. Today. In this very moment. But, we can also walk out of those doors with her, and directly into a disaster. We can bring her home tonight, only to be readmitted by morning because of something lost to haste. To be brutally honest, we didn't make it this far to lose everything. We are not ready. We are not where we were on March 10th. Not even close.

Because more is lost to indecision than to wrong decision, we had a choice to make. A few days ago, and after a very long, very personal conversation with Cathy. Suddenly, we weren't just a couple who had spent the last eleven months in a hospital with our kid. We were Little Bird's parents. Two adults, who needed to opt for not our own personal wants or needs, but for what is best for our child. With every ounce of reluctance in this world, we did.

As I write this, the ball is in motion. We've decided to make a bit of a pit-stop in our journey. A brief respite, if you will. The opportunity to re- familiarize ourselves with what we learned. The chance to get our groove back, and to do what is absolutely essential for Little Bird's well being. A rehabilitation facility (oh, yes), until we can once again declare ninety nine percent certainty. For however long we may need. Could be a couple of weeks. Could be months. It all depends on our ability to learn how to trust ourselves again. To no longer feel the fear that we've been trying to overcome. To bring Little Bird home to anything less than a family that is not fully prepared would be the biggest mistake of our lives. She deserves the best that we could give her, and we will be not only on top of our game. We will make damn certain that we are ahead of it.

And so medically, the game plan is to begin weening Little Bird off of the TPN pump while she's there, as well as to re-acclimate her to the bottle feedings she's already begun. It also gives her a running start against some neurological and physical issues. An environment that mimics home. No restrictions on visitations for her siblings. And there's also that gigantic decrease of risk of infection as compared to the PICU. Little Bird's immune system is still healing. It will be several more months before she is capable of fighting off everyday germs that we are all commonly exposed to. These aren't required goals. In fact, there is no requirements. As soon as we say the word "go", she will be discharged from this facility. So, in the meantime? We're going to continue to work on getting back to where we were. Back to where Little Bird needs us to be. Back to good.

This is it. The final leg of our voyage to hell and back. Her transfer hasn't yet happened, and likely won't for at least another two weeks. Until it does, we'll use this time to say farewell to the world's best pediatric intensive care team. Personally, the hardest part about this is having to leave behind such an outstanding group of medical professionals. But I know we will meet again on, at the very least, an outpatient basis. They've held us up thru some of our darkest days. This family would not exist today without them.

Thank You...

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It's All Fun & Games Until Somebody Loses A Broviac.....

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.

"Who dat?!"

Chillin' With Her BFF Kristen!

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.
 

"Cute Bunny!"

"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.

"Everybody's a comedian 'round here..."

PICU Swagga

"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.

 "I look gooooooood!"

"Mmmmm! Bubble bath!"

Facepalm!

And A Manicure!

 Patiently Waiting For Her Nails To Dry

Clearly, She's Gaining On Us!

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?

Lights! Camera! Action!

Hell Hath No Fury

Who Need's A Bink When You've Got 8 Feet Of Vent Circuitry?

Sporting The New PICC Line

I'm Seeing A Pattern Here...

This Smile Can Cure Anything

Baby, You're A Superstar!

As promised, Da Munkay has also been returned to her. In one piece, but rebuilt to be a damn near exact medical replica of Little Bird, herself. Complete with one of her NICU caps, as well as the very first hospital ID bracelet she ever owned. And as suspected, she found this all fascinating. After reaching for it with both hands, she promptly began to her taste test, just to make sure it was still her favorite stuffy. I'm thinking that by providing her with the ability to pull out as many tubes and wires on this thing as she pleases, she'll hopefully leave her own alone.

Da Munkay!

Sweet Baby Curls!

Still Hasn't Grown Into Those Eyes, And I Hope She Never Does!

Fishy Kissies!

"You can let go, Daddy. I got this!"

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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