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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One Fine Day.....

When we arrived at the PICU yesterday, we were surprised to learn that Little Bird was swapped back into the post-op bay. We must be twitchy, because no sooner did we walk in the doors did a group of nurses look at us and say, "Nothing's wrong! We just needed her room! She's over there, in bed number four!". We get that a lot lately. "Hello, Rachael? This is Claire, at the PICU. Nothing's wrong! I just wanted to let you know that we changed Little Bird's formula." Or, "Hi, MFH, it's Cathy. Nothing's wrong! I just wanted to see how you guys are holding up." Aftershocks. That's what I call them. Those sudden moments of terror that we still feel during any initial words of conversation between us and our team.

Little Bird was sound asleep and snoring in front of her TV. She's got a love for the Penguins of Madagascar like no other. While Grammy and I were scrubbing in, MFH approached her bedside and gave her the paternal once-over. As he did, she just so happened to sense a presence. She opened her eyes, and nearly shit herself silly to find this gigantic, bearded face in front of her own. I really need to start learning to ready the camera before we walk in. 

"I see you!"

"This won't hurt a bit!"

"Daddy is so comfy!"

A few moments later, a slew of our nurses came in to greet us with excitement. "You have got to see these pictures!". We left a camera at the baby's bedside in order for our friends to capture any Kodak moments that we might miss when we're not there. And boy, did they ever! The Easter Bunny was making his rounds in Danville. And what baby girl doesn't love a visit with this cute, candy-bearing creature? Little Bird. That's who!

She. Was. Terrified. At first. But after a few minutes, and some very funny voices, she ever-so-slightly warmed up to him, and posed quite proudly for some photos. Now, this is the part where ya'll are gonna wanna slap me, because I didn't bring that camera home. There's still plenty of capacity and battery power on it, and therefore, I don't have them available to upload just yet. But I promise you, the next update will include them in time for the holiday.
 
During the last three weeks, we'd received several gifts from Team Little Bird. Friends from across the state and country have sent her the most thoughtful presents. A handmade prayer shawl, from one of our home health nursing coordinators. Created by the women of her church, and annointed by their Pastor, we made sure to let the staff know to keep it in her crib. A little lamb from one of our closest PICU nurses, whom Little Bird absolutely adores. A bible, and a silky, stuffed bunny that apparently looked good enough to eat (Oh, yes! She tried!) from Ben and Jeff. And while we're on the topic...Megan, if you're reading this, please forgive me. But Da Munkay's gonna get it. Surgery, that is. She's about to go under the knife and receive a mic-key button, Broviac line, tracheostomy, and emergency exploratory surgery. Hey, don't look at me! I didn't tell you to buy Little Bird her most favoritest, most snuggliest, most cutest, carried-everywhere-she-goes, tiny buddy! Seriously, she loves it. And I wanted to make sure I picked the one she trust's the most. You all have brought some of the biggest smiles to this little face, and experiencing them has been priceless to us!

"He was big, and white, and he had pink ears!"

"We'll see how funny that bunny stunt was at three o'clock in the morning, now won't we, Mommy?"

"Om! Nom! Nom!"

"What do you mean, 'it's not edible'?!?!"

"And then, the little baby stopped chewing on her mommy's hand long enough to take a picture!"

We hung out with her for a while, and caught her up on all the gossip of the day. Number Four's new boyfriend. Number One getting behind the wheel for the very first time. Number Five's new rash. Number Two and Number Three's shenanigans. Daddy's renewed rivalry with the next door neighbor. Mommy's nervous breakdown. And of course, everyone who has been praying for Little Bird's recovery. By the way, she told me to relay a message to you guys. She says, "Uhhh uhhhh uhhhhhh uhhh!". In trach-ese, this equates to "Thank you so much for praying for me! I can't wait to come home and give each of you a great big hug! I have the best friends and family in the whole wide world!!!"
 
Speaking of home, well. See, that's been a bit of a dark cloud over us. And I'll explain it all in a few minutes. First, let me tell you about everything else we did. Amanda came in and asked us the most amazing question ever. "Would you like to take Little Bird outside, for a walk?" Oh. Hell. YES!!!!

"Outside? For real? You're pullin' my leg!"

"I'll be right back!"

"Oh snap! The floor just moved!"

"Listen! No dropping the baby, big guy! Got it?"

"C'mon, Dad! One sip of coffee! Mom doesn't even half to know!"

Aside from her car trial, which was for training purposes, this was her first official outing. Just for fun! It took us all of five minutes to change her diaper, scoop her and her posse up, and we were out of that unit so fast we left a dust cloud in our wake. Little Bird was so excited, and so curious. We took a private elevator down to the lobby, but when it's doors opened up, she greeted all of the passersby with some of the best expressions ever. But then, we walked out into the sunshine and warm breeze, and she kinda lost it for a minute. 

Adjusting To This New Scenery

"Turn the lights down! It's too bright out here!"

She isn't very fond of the brightness. And to be painfully honest, the breeze on her skin scared her. She's spent her entire life inside the confines of a hospital, so this is to be expected. But MFH was holding her, and kept her safe from all things frightening. Within a few moments, she eased up enough to put away her pout and take a look at the water fountain and fellow feathered friends. 

There was no chance that I was going to allow Dad to steal all the glory, and so Amanda assisted us in switching her off to me. We sat on the patio talking while the baby basked in this first real taste of what lies beyond the boundaries of her environment. And it didn't take her long at all to become damn near giddy with excitement and curiosity. Kicking her legs and bouncing on my knee. She had a blast. We all did!

"Hmmm! I tink I like it out here!"

What A Miracle Looks Like

"To da tur-toe pond!"

I suppose it was this taste of freedom that led me to ask Amanda something I already knew the answer to anyway, but still wanted to confirm it, one more time. Was there even the most remote possibility of being able to bring Little Bird home before her first birthday? On Monday, she'll turn nine months old. We're coming upon planning a celebration for her. I guess what I really wanted to know was, would it be in our backyard, or the rooftop playground of this facility? Amanda has always, always been very forthcoming with us, and I knew she would be again. She looked at me, and shook her head. "There is none". It's going to take at least the next three months to simply build her back up to where she needs to be in terms of her nutritional intake and weight gain. And that'll be right before we begin the next step of more surgeries to hopefully fully repair the damage that the ischemia caused.

I simply nodded, in agreement with her. I want nothing more than Little Bird's complete recovery, first and foremost. Even though it is more than mildly devastating to hear that home is now a land far, far away, the fact that Little Bird was sitting on my lap, outside? Is nothing short of miraculous. So what? So what if we've decided to coordinate with our medical family, and plan a birthday party of epic proportions within the PICU? So what if we are organizing the most spectacular bash any group of wee ones could ever imagine? Complete with cake, and ice cream, and TPN galore. We have so much to revel in, in her simply being alive right now. Little Bird's first birthday will be of the stuff dreams are made of. We've already begin to debate a theme.

With that, we decided that it was starting to get a bit chilly, and brought the baby back inside. The turtle pond in the lobby is beautiful. Little Bird got a kick out of watching the water flow through these ceramic reptiles.It was also starting to put her to sleep, so we headed upstairs for nap time. But not before letting Little Bird make her rounds on the floor and visit with her BFF's. I'm fairly certain that she's met more people in nine short months than I have in nearly thirty four years. Shy just isn't a word used to describe her! 

"Let's do this again sometime!"

"I'm free tomorrow afternoon. How's that sound?"

We got back to her room, and Amanda prepped her GT feed and TPN while we tucked her in. She's starting to teeth, and will orally attack anything that comes within her grasp like a rabid kitten. First the innocent and sweet little smile. Then the clutch. Before you know it, you're missing a couple of fingers and your wedding ring. But, with or without teeth, she can chew on my hands any day! Who can say no to that face? 




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There Are No Coincidences......

A lot has happened in the last three and a half weeks. I'm going to begin where I left off in my last entry. Little Bird underwent the surgery to resection the forty centimeters of small bowel; what remains of her digestive system. If ever there was a long shot, this was it. Give her time to heal, said the specialists from across the state. Then, they'd attempt to resume her mic-key feeds. Until then, the TPN would be enough to sustain her. Little did we realize that the TPN would be the easy part.

Little Bird had a bumpy go of things, at first. She began showing signals and symptoms that her body wasn't able to tolerate eating. At least not in the way she'd become accustomed to. The half and half mixture of electrolytes and formula that they proved to be unabsorbable by her. And so her gastroenterologist came up with a new plan. Continue trophic amounts and frequencies, but try something different. They changed the brand, and excluded the Pedialyte all together, opting to instead add a tiny bit of pectin to this concoction. You've got to love a medical team who will resort to any measures to help heal your child. The idea of pectin being used therapeutically in this setting is rare, but not completely unheard of. And so far, so good. She is able to withstand five milliliters, every four hours. Progress comes in every shape and size.

Little Bird also had some issues in regards to her ability to breathe. But she's since regained control over her previous CPAP settings on her own ventilator, rather than that of the hospital's. It may not sound like much, but this is huge. Had she not been mechanically dependent, it'd be akin to an eight month old baby, with healthy lungs, having their breathing tube removed. Definitely something to celebrate, and that she did. Her nurses began taking her back out to socialize at the main desk again. And for her, this is equivalent of going to the park.

She stayed true to herself by catching yet another bout of tracheitis, and also healing from it in no time at all. However, it wasn't the only threat to her immune system. As I type this, we're awaiting results of lab cultures. An infection in her central line. Though, we don't yet know whether this is caused by something common, such as day to day handling of it and her. Or something more ominous, like the resection surgery not working. Her team isn't putting anything past her. They already started her on a double cocktail of antibiotics after noticing bloat in her abdomen. They suspect that there is a chance that she's leaking bacteria into her blood stream. As if hearing the word 'sepsis' once wasn't enough. MFH pointed to the elephant in the room, asking how exactly would they go about treating her should the diagnosis be the latter. They don't yet know. And they've wasted not a single second conferring once again with the University of Pittsburgh to that regard.

I'm not afraid. Call me crazy, but I've had the privilege of knowing ahead of time that this will prove to be something minor. I'm going to go out on a limb right now, and explain it to you. Remember that dream log I talked about several months ago? There was one dream in particular that is keeping me from going over the deep end right now. The one I'd written about previously. The preemie baby girl, with the footprint-shaped rash on her belly. My mom, telling me that "It's Scarlet Fever, but she's going to be okay."

Around here, Number Five is also known as The Exception To The Rule. None of our other kids, including Little Bird, have allergies. But somehow, Number Five does. She is allergic to such a plethora of things that I've carried a list with me, on my phone, at all times, for the last four and a half years. The blue Johnson's bath soap. Cats. Certain artificial colors and flavors. When she has a reaction, she has a reaction. Not anaphylaxis. But she blows out in hives so severely that it looks like someone scalded her with boiling water. All. Over. Her. Body. Days ago, she suffered as much, though we've yet to find the exact culprit of the cause.

In that particular dream, the baby girl that I'd carried to my mother's doorstep had a rash that resembled what's taken affect all over Number Five's body. It was localized to the abdomen, and in the exact location of where Little Bird's mic-key button is located. My mother warned me, from beyond. She said she'd be okay. After watching Little Bird survive something that an otherwise healthy adult could not, I am inclined to wholeheartedly place every faith that I have in her message. Little Bird is going to be okay. I believe that. I believe in Little Bird.

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