Wednesday, June 27, 2012

"I've Just Got To Put These Wings To Test...."

"Mmm! Purple! Purple looks tasty!"

"What do you mean...'childproof'?

"I is too coool for childproof!"

"Shhhh! This is the best part!"

"You can't see me!"

"I is practicing my invisibility cloak!"

"I tink it's broken!"

"Da five-oh will never catch meee!!"

"Dey see me rollin'....dey hatin'..."

"...but dey won't catch me ridin' dirty!"

I wish I had more time to write a bigger update. Unfortunately (and fortunately!), we are now less than five days away from springing this little Lady from the PICU, and the clock is definitely ticking! The bad news is, I probably won't have a chance to sit down until she's over this threshold and settled in. But that's also the good news! In the meantime, I will say that she is continuing to thrive. Not only is the vent gone (like, gone-gone, as in it's no longer even in her room!), but so is the oxygen (that's still by her bedside, of course, as it will be for emergencies once we're home-though she no longer utilizes it). She sprouted four teeth, so I don't recommend putting a finger anywhere near her mouth anymore. Her feeds are also chugging along quite nicely, though she hasn't gained any weight in the past few days. But it's something her team is already all over like white on rice, and they've bumped her formula up to a higher calorie variety. As you can see by the pictures, she is quite the active girl, so I'm not going to get too concerned just yet. Well, not unless I was one of her siblings. Little Bird is going to run them into the ground in no time! 

"They always said that you knew best but this Little Bird's fallen out of that nest now. I've got a feeling that I might have been blessed so I've just got to put these wings to test..."~Annie Lennox
 



 
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Tuesday, June 19, 2012

Covering All The Bases (Tentatvive Date Of Discharge: Round Two!)........

This afternoon, we had a meeting with our discharge team. And this time 'round, we made sure to cover every base. The plan that we came up with it's kind of confusing, but that's a good thing. Because Little Bird has decided to take charge of everything, and once again, we follow her lead. 

"Mom! I told you! I not finished growing dem yet!"  

Since she's been making such tremendous and unexpected progress regarding the vent, her pulmonologist feels that she is ready for something more. As I type this, she is in the midst of a twenty four hour trial of breathing on her own. She's been sailing right thru her nap times, of up to three hours, unassisted while she sleeps, with no monitor violations. So they've decided to go ahead now, while she's still inpatient, and see how she does with this throughout the night. It doesn't necessarily mean that it will happen. But, it might. And since we're already waiting on our in-home nursing team to coordinate a schedule, why not give it a shot? 


"I isn't gunna smile for you!"

"But I will strike a pose!"

If she does happen to successfully accomplish this tonight, she'll do the same tomorrow night. And the night after. And the night after that. So long as she doesn't have a problem with it. She'll also undergo another chest x-ray tomorrow morning, to check for any signs of wear and tear on her lungs and airway that this can cause. If there isn't any, and if she manages to pull off seven consecutive nights, then we will be released to come without the ventilator. I know, right? Since she was trach'd back in October, I never once thought this would be a possibility. Hell, I never thought we'd be released with her breathing twelve hours by herself. Even if that's all she can manage right now, then so be it. She doesn't owe me anything. Not even an explanation. 

Ooooh! Sooooo close!
And she shut me down!

This also plays a factor in her date of discharge. Because if she's to come home without the vent, it means she can essentially come home a week sooner than scheduled. It takes a while for the home supply company to receive approval from the insurance carrier, order the equipment, and have it delivered. And not many of them keep this machinery on hand due to the cost. But if we won't be needing it, that will clear up a lot of free time on the calender. 

However, if she does need the vent during bedtime? Then she'll be released from the hospital, for the very first time, on her first birthday. Funny how things come full circle, isn't it? If you would have told me, upon the moment of her birth, that we'd be bringing her home in exactly one year? I'd have never believed it. And what better a gift can we give her than freedom? So, upon hearing the details, her nursing team has declared that her birthday party will be Sunday, July 8th, at the PICU. For how excited they, and we, are for this, it is already so bittersweet. And we've been warned. Not a lot of staff is going to make themselves available on the day she does come home. Because not very many of them can handle having to say goodbye to her. But we promised them that this is not goodbye. It is very much "see you later!"


"Make mine a double triple cappuccino mocha latte decaf, with a shot of espresso! No whipped cream, please!"
"I tink I'll keep you, Daddy! You're my favorite!"

Told You She's The Princess Of The PICU!

We also met with the proprietors of the respite care facility that we'd chosen, but subsequently opted out of. Part of MFH and my plan was to make certain that we have a safety net in place for the future. We are not expecting any of this to be a piece of cake, by any means, vent or no vent. TPN or not. On the off chance that we find ourselves in over our heads, it's just something that we felt we needed and was the right thing to do by her. And if we do end up needing them, they'll be but a phone call away. If not? Then so be it. But it never hurts to have backup for your backup. 


That Thing's Gotten Her Thru Many A Rough Night
MFH Is A Binky Stealer!!!
How Little These Feet Once Were...

The rest depends on Little Bird, and what she does next. We were extra cautious not to tire her out before the trial, even though I so badly wanted to put her in her walker and take her for a stroll. Instead, we hung out at her crib, watched Monsters, Inc. for the umpteenth time, and let her chew on us. At one point, she even leaned in to me and slimed my cheek with the best baby kisses ever. Oh! I almost forgot! Her top two front teeth are on the verge of breaking thru any day now! Though, I failed miserably at getting any pics of these. It's been difficult to work a smile out of her when she knows the camera is there. But I will win this little war, one day! In the meantime, I'll continue to impatiently watch the clock before calling the unit and checking on her status in regards to the test. If you're not already on my Facebook page, I suggest you add me, because you'll likely here it there first!

 
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Sunday, June 17, 2012

What Makes A Man A Dad.....

Upon the request of his four year old daughter, he runs down to the corner store at the end of the street at eight o'clock in the morning, and in the pouring rain, and buys her M&M's for breakfast.

When his wife declares that she's given up during labor, and refuses to push, he promises her a banana split in order to get her to do so.

When the pet cat delivers her kittens in the middle of the night, he stays by her side, tying off tiny umbilical cords with dental floss and talking her thru it.

When one of those kittens is stillborn, he spends half an hour attempting CPR.

When his eleven month old son is undergoing an emergency lumbar puncture, he refuses to hold him down, and instead opts to hold his hand and distract him from the pain.

When his oldest son gets sent to the principal's office during his Kindergarten year for pulling the fire alarm, he goes in with him, and takes the verbal tongue lashing himself.

After witnessing his wife give birth to their daughter four months early, he doesn't care who sees him crying, on his hands and knees, in the lobby of his own mother's employer.

When his colicky five week old spends another night screaming her head off, he gives his wife a break, allowing her to sleep while he paces the floor with the baby on his shoulder. All. Night. Long.

While driving his newborn home from the hospital, he refuses to exceed ten miles per hour, no matter how many truck drivers he angers.

He doesn't hesitate to run down a hospital corridor, arms flailing while yelling for help, when the vent alarm for another parent's child-in the room next to his own daughter's-alerts.

When his daughter awakes in the middle of the night with a bad dream, he gives up his spot in the warm and comfy bed for her, and sleeps on the floor without complaining.

He spends obscene amounts of time and money until he successfully lands that all-important stuffed animal for his toddler in the skill crane at the grocery store.

He patiently waits in the freezing rain for four hours until his son catches a fish.

He answers the toy phone that his three year old son hands him, while he's in the midst of cooking him dinner.

He even changes the poopy diapers!

They may not always match, but he coordinates his daughters outfits for them.

He chases Chilly Willy down the street, knowing full well that there is a freezer full of ice cream back at the house.

When his three year old daughter catches a frog in the backyard, he lets her keep it.

When his eight year old catches the flu, he let's him give it to him, too.

When people comment on how beautiful, well behaved, or intelligent his children are, he lets his wife take all of the credit.

He is willing to not only buy his kids Play Dough and Moon Sand, but to also spend hours picking it out of the carpeting.

He folds baby socks.

He obsesses over a single drop of water in his daughter's vent circuit, unable to feel that she's safe until it's dealt with.

When the next door neighbor comes knocking, and complaining that his son almost hit her with a snowball, he spends the rest of the afternoon with him outback, teaching him how to improve his aim.

He runs to the grocery store at two o'clock in the morning when he realizes that they're out of milk, and his daughter will refuse to drink anything else when she awakens bright and early the next day.

When he accompanies his kids to appointments at the pediatrician's office, he comes out upset after they received a shot.

He's willing to sit in a movie theater for hours, surrounded by a bunch of little kids, watching cartoons.

After spending months awaiting the opportunity to finally hold his preemie daughter, he lets his wife have it all to herself because he knows how badly she's been yearning for that moment.

He lets his son take a bogus sick day off from school. Not because he doesn't know he's faking it, but because he wants to spend it with him.

Even though she doesn't mean it, when his preteen daughter says "I hate you!", it devastates him.

He's never missed a single cheerleading practice, or game. Even on Sunday's, when his favorite national team is playing televised.

When his twelve year old daughter is in love with a boy, he hates him. When she ends up hating that boy, he hates him even more.

He's willing to risk his marriage in order to be the good guy, and allow a later curfew, or candy before dinner.

He doesn't care what his buddies think when they discover him buying Seventeen magazine in the grocery store.

His kids are never too old for him to hug them, kiss them, or hear him tell them that he loves them.





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Saturday, June 16, 2012

Oh, Bird!!..........

We all know how Little Bird loves to keep us on our toes. She can be quite the spontaneous little lady, and today was no exception. We decided to split visits down to groups of two, rather than walk into the PICU with all five of her siblings and expect the staff to put up with us all at once. So this afternoon, it was MFH, Grammy, Number One, and Number Three's turn. And they were definitely perplexed to discover that the baby has been placed back on her ventilator. Her team didn't understand it, and only knew that she wanted no part of breathing on her own this morning when they tried to attempt to disconnect her. It wasn't until MFH told me how she refused to allow anyone to dress her that we both realized what the issue was. She's getting sick again. With tracheitis. 


"Clothing is overrated anyway!"
 
 
"Mmmm! Binky guuuud! Nom! Nom! Nom!"

By this time tomorrow, she will likely be on antibiotics to treat it. During their visit, she had a very brief monitor violation in which her sats suddenly dipped to eighty two. MFH immediately suctioned her, though it took him several swipes with the catheter to completely clear her airway enough for her number to jump back up into the nineties. These are all typical symptoms that she displays even before any labs are taken. But I'm proud to say that the confidence that we thought we lost is still there, and apparently as strong as it ever was. He didn't miss a beat when it came to the machine and monitor alerting. Actually, he shooed the nurses away and took care of it himself without ever giving this a second thought. Not something either one of us would have done a month ago, but still something that we need to be able to do. And we are.

Little Bird rather enjoyed hanging out with everyone. She cracked up smiling at Grammy every single time she looked at her, chilled with her bros, and even gave Daddy a big ole belly laugh-minus the sound-when he kissed her and his beard tickled her cheek! Even when she's getting sick, her silliness does not elude her. 



Her Bodyguard
 
 
Corrupting Her Big Brother!

But her antics didn't stop there. She had one more very big surprise up her sleeve. Our nurse practitioner came in to give MFH an update on Little Bird's medical status, and informed him that as of this morning, she met her required GT feed goal amount. Something she wasn't expected to reach until this coming Wednesday. So her TPN has been hereby discontinued. It will still be another five days before the PICC line is taken out (if she doesn't get to that herself, first), as they need to keep it in place a while longer to ensure that she won't need it again. From now until Thursday, we'll watch and wait for any signs that she might need the TPN again, but pray that she won't. 




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Friday, June 15, 2012

This Changes Everything.....

"Don't worry, Momma. I got this!"

When I was a teenager, my mom used to say, "You just wait! One day, you're going to have a daughter who will be ten times more rebellious than yourself!". Suffice it to say, I have a strong instinctual impression that she's looking down on me, and right about now, laughing her ass off. In Little Bird's world, so much can happen in such a short amount of time. March 12th is proof positive of that. For as quickly as she has been known to crash, she's also had periods of insane recovery. When she managed to rebound from the bowel perforation and septic shock, we were pretty impressed. But what I'm about to explain to you is almost ridiculous.

As of two weeks ago, the plan was to transfer her to a respite care facility and give her the opportunity to reach her TPN/GT feed goal ratio while MFH and I regained our emotional bearings. Little Bird never plays by the rules. She never has. She's made her own more times than I can count, and broken every one of them, too. Once again, she's made up her own mind. And once again, she's completely defied all laws of western medicine.

By all calculations, she was expected to meet her specialist's expectations sometime around the end of July at the very earliest. Realistically, we were suspecting that it might even be longer. You can't exactly rush a kid who has less than a quarter of her intestinal tract to work with. A milliliter at a time, every few days. Watch and wait for signs of rejection. Signs of liver or kidney failure. Pray to God that she could handle it. Handle it, she did. After a few minor adjustments and tweaks to the University of Pittsburgh's recommended protocol, Little Bird took the ball and ran with it. 

"I grewed a tooth!"

Throughout the past two weeks, she decided to be a show-off, and prove every scientific study wrong. It's taken her literally fourteen days to nearly accomplish something that could have very easily taken that many months. In six days from today, she will meet this goal like a boss, and her TPN is scheduled to be not weened down, but discontinued. Spectacular progress in terms of her growth and weight gain, and beyond that of what any of us could have ever hoped for. And as if that weren't enough, she put the icing on the cake by what she's accomplished on the vent.

When I wrote the last update, I actually forgot to mention something. Something that was certainly not overlooked by us. When Little Bird was transferred to the PICU last December, her PEEP setting was pretty high. Single digits weren't something we thought we'd see for quite some time. But her team felt otherwise, and immediately began making every effort to get her to do the same. Remember when you were small, and couldn't yet blow up a balloon by yourself? Remember how difficult getting one started was? That is exactly how breathing is for Little Bird. Once that initial inspiration is made, she can do it. The vent just gets her started, and keeps her lungs from deflating completely. We all breathe at a PEEP of five to six. This is the measure of the amount of pressure needed to keep our lungs from collapsing in between each breath. In January, she succeeded in being lowered from eighteen to seven. A few weeks ago, she was lowered, once again, to six. And four days ago, she astounded us all by smashing her own record.


"I can has my puppy now?"

Her team began to notice some nuances in regards to her efforts. Things like her not panicking when her trach was being changed, or her sats not plummeting during circuit changes. These, combined with the massive growth spurt she's most recently experienced. On March 12th, we finally understood why she was meant to endure a tracheostomy months before that. It all began to make sense. Because she certainly wouldn't have been able to withstand another emergency procedure that night, and the ventilator being so readily available to her turned out to be a blessing in disguise. For the last three months, we questioned the universe once again, trying to understand why Little Bird had to crash that night. We were so close to coming home. It didn't make any sense, and it angered me beyond extent to have to look at the gaping scar across her abdomen. The constant reminder of how close we came to having it all, and almost losing everything. Why her? Why the damn TPN pump, on top of everything else? What more could she take? How much longer until her labs would start to come back indicative of liver failure?

Not A Scar, But Proof Of Life

Our fears about intravenous nutrition are not unwarranted. It may seem simple enough, but I can honestly tell you that her dependence upon a machine in order to breathe is a lot less complicated. If the vent should ever fail, for any reason, MFH and I can still assist her via an ambu-bag. If we misdose a single TPN feed, her liver will shut down faster than we could catch the symptoms. What a lot of people may not realize is that even though TPN does save lives by providing a means of sustenance, the odds of a short-gut patient requiring a liver transplant because of this are frighteningly high. Especially for a child. But when there is no other way to feed your baby, what other choice does a parent have than to take that leap of faith, and pray to God that things work out in the end?

And when does it all become too much? She was already trach'd and vent dependent. She already had a G-Tube. And both of these, we were used to. We had several months to prepare. The added technology of intravenous feedings was for us, the straw that broke our backs. We started to come to terms with that truth. That we couldn't handle the responsibility and the weight of one more medical intervention. And the events that occurred on March 12th were suddenly infuriating. If it weren't for that damned pump, she'd have been home by now. If it weren't for that damned pump, we'd be able to do this. As we came to this honest conclusion with ourselves, we admitted as much to our team. And no sooner did we say the words did Little Bird work her magic, once again. 


Victory! (she caught the camera strap!)

A phone call on Monday morning, from one of our nurse practitioners. They decided to give her a shot at breathing. On her own. For the last three months, she'd been receiving double the amounts of nutrition that she would have been, had she not needed TPN. Double her caloric needs meant double the weight gain. She managed to pack on more pounds during this time than any other. Something that had been a goal since October when she became what was said to be very possibly permanently, mechanically dependent. If she could overgrow the vast scarring in her lungs, there was a chance that she'd be able to one day breathe without assistance. In all honesty, this wasn't something that was discussed in terms of months, but of years. Perhaps by the time she'd be entering Kindergarten, at best. It was the most realistic time frame that we were ever given. But her recent and sudden influx of growth made her respiratory team wonder. What were the chances that she might be able to now handle ten or fifteen minutes without the vent?

And so, they gave it a shot. They disconnected her circuit, and stood watch next to her, waiting for any signal of distress. And ten minutes turned into six hours. Not willing to push her beyond that, they decided to wait until the next morning to try it again. MFH and I were cautiously optimistic. But even if it was a fluke of nature and she couldn't accomplish this again, it was hope. On Tuesday morning, they again disconnected the machine. This time, she achieved eight hours with nothing more than the assistance of a tiny bit of oxygen, a heated moisture exchange piece, and a Passy-Muir speaking valve. The latter, providing her with a little bit of resistance, but enough to mimic that of the pressure of the vent and keep her from panicking. Clearly, this wasn't a fluke. Little Bird is able to breathe. On. Her. Own. 


"This way to da finish line!!"

On Thursday afternoon, MFH and I arrived at the PICU in the midst of her ninth hour of freedom. Her respiratory technician was on the floor and watching her the entire time. She asked us how we thought she looked. Little Bird was sitting up in her crib, playing with some toys, and patiently waiting as her nurses prepped her trach change. She looked fantastic. So we all agreed to keep the trial going. We changed her trach and her outfit. We watched her show off her ability to also now stand upright, supporting her own weight with just a little bit of help balancing. We watched her nap. And we dodged her splashes during bath time. All without her being attached to the machine. This is a very big deal. This changes everything

The vent, collecting dust in the background!

Even though she can't vocalize it, there is no denying that Little Bird is making her voice heard, loud and clear. She knows what she wants. She wants to come home. For whatever reason, she feels that the timing is perfect. And let's face it, this kid is nothing if not always ahead of her time. I can so totally envision her sleeping on some random sidewalk, twenty years from now, waiting days in advance for concert tickets. It's been almost a year since we were instructed to follow her lead, and that advice still rings true. When she is ready, she will let us know.

Her team isn't willing to allow her to go beyond twelve hours unassisted yet. But from here on out, as long as she isn't sick or showing signs of distress, she will be disconnected from the ventilator from eight o'clock in the morning, until eight o'clock each evening. Half of each day. I can't even begin to describe how liberating it feels to be able to pick her up without the weight of the circuit-the constant reminder that eight feet of tubing is a lot shorter than it seems. It's going to take us some time to get used to the silence in her room, as the white noise of oxygen and humidity hissing in the background is no longer present. It's ironic, isn't it? The addition of the TPN pump, and the havoc that that wreaked on our family turned out to be an unforeseen blessing. Had it not been for the extra nutrition this provided her, she wouldn't be breathing on her own. 


"Wait'll they get a load of my next trick..."

MFH and I walked out of that hospital last night in utter silence. Shock. Dismay. It's almost as if the entire last twelve months had been a bad dream. As if someone woke us up, and here she is. Little Bird. No ventilator. And in a few short days, no PICC line. How is it that you get pushed to the brink of your breaking point, fall to your knees and cry 'uncle', and then suddenly? Suddenly, an invisible hand reaches out and grabs you by the back of your collar. Pulls you back up on your feet and pushes you in the direction you were meant to go. How does that happen? Little Bird is coming home. On Tuesday afternoon, our team called off the scheduled meet and greet with the representatives of the respite care facility that we'd chosen for her. We will no longer be requiring your services. I don't know how she managed to pull all of this off. And I don't know why she chose us to be her parents. All I know is what I've witnessed. That she knows what she's doing, even if we don't. And that sometimes, everything happens for a reason.

 
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Thursday, June 14, 2012

Look Mom, NO VENT!!!!

Three days ago, Little Bird's team decided....

....To see how she'd hold up....

....If she was disconnected from the ventilator....

....What none of us ever predicted....

....Was to witness another miracle....

....."Look, Momma!".....

...."NO VENTILATOR!!!".....

....For TWELVE HOURS at a time!!!!......


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Saturday, June 2, 2012

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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Friday, June 1, 2012

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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