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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