Sunday, September 9, 2012

Little One....

I'll tell you why I
Don't want to know where you are

I've got a joke I've been

Dying to tell you

A silent kid is looking
Down the barrel

To make the noise that I've
Kept so quiet

I kept it from you, Pitseleh

I'm not what's missing
From your life now

I could never be the
Puzzle pieces

They say that God makes problems
Just to see what you can stand

Before you do what the Devil pleases

Give up the thing you love....

No one deserves this.....

The first time I saw you
I knew it would never last

I'm not half what I 
Wish I was

I'm so angry
I don't think it will ever pass

And I was bad news for you
Just because

I never meant to hurt you.....

~Elliott Smith

share on: facebook

Friday, July 20, 2012

The Biggest Blog Post In The History Of The World......

Shhhh! The baby's sleeping! And if you wake her up, I'll kill you and bury your body underneath the swimming pool ya'll won't have an update to read! I have a lot to fill you in on. The last two and half weeks were incredibly eventful, to say the least. There is no way I'd ever be able to write about everything, but there is still plenty to share. I'm going to take this rare opportunity of sitting down in front of my computer, uninterrupted, to tell you all about it. So sit back, get comfortable, and enjoy this bit of our highlight reel. It's time for a picture extraaaaaavaaaaagaaaaanzaaaaa

Mommy's Little Helper

Sissy Love

"This thing gets great gas mileage!"

Our second day home brought some challenges. MFH awoke before me that morning, and by the time I came downstairs, he and April were hovering around Little Bird's crib. Initially, we all blamed the pulsox machine. Although she was smiling and playful, it was alerting to her heart rate idling around a hundred and eighty beats per minute, which was definitely abnormally high for her. Her oxygen level was also off, and lower than we like it to be. Holding steady at ninety three, it still wasn't enough to panic about. Though MFH and I prefer it to be at least two points higher. And like I said, she was happy. We changed out the wire for a new one, and added a bit of medical tape when we placed it on her other foot. Sometimes changing it's location can also make all the difference. But, it didn't. 


Priceless Life

April took Little Bird's temperature, which was slightly elevated. So we all assumed these changes were due to her teething. She's been popping in new pearly whites, two and three at a time. Perhaps her increased heart rate was coming from discomfort. And so we gave her a dose of Tylenol and waited for it to kick in. A half an hour later, no change in numbers, but a change in regard to her breathing. She coughed, and we could hear what sounded like wheezing. She'd already received her morning dose of Pulmicort, so we went ahead and administered her back up medication, meant for exactly that situation. And this was when we also called Kenny, our respiratory therapist. We asked him to bring up a different pulse oximeter, altogether. Just to be certain that we were getting a proper read. He brought one over immediately, but before he did anything else, he scared the hell out of us. "If she was my daughter, I'd have her under the o2." Which was precisely what we did next. 

Sleepy Birfday Girl!

Our 'Thumbs-Up' From Little Bird

"Please tell me I isn't related to dese people!"


He hooked up the new monitor by the time we traded out her HME for the O-ring, and that quickly, her oxygen level jumped to ninety eight percent. The four of us spent the next twenty minutes watching her heart rate slowly decrease to her norm of one forty five. Apparently, the air in our home is a lot dryer than that of the hospital's, which is climate controlled. Add to that the air conditioning, which is constantly running, and it made for one hella case of dehydrated, cobweb lung. But, we have the means and the knowledge to assist her, and we did. For the next twenty four hours, we kept her oxygenated along with utilizing a humidification chamber, around the clock, and dosed her Albuterol as necessary. And by the next afternoon, she was good as new!

"Oh, Jessie! You shouldn't have!"

What's In The Box?

"Tank you sooo much!!!"

Good as new, as in, rolling on the floor, and laughing her ass off. Literally. Every single afternoon, we stretch a blanket across the living room carpet, turn on any given Sirius channel on the television, pull out a metric shit ton of toys, and have at it. And it's not just MFH and I who enjoy these hours of playtime. Her older siblings also get very much into the ritual, and often! It's not possible to walk past the party and not want to partake in it. And, as witnessed in this post, she goes absolutely buck wild for eighties music. Styx. The Go-Go's. Pat Benatar. Old School Madonna. She loves it all! One afternoon, she was standing on my lap, and at first, I thought she was losing her balance. But, she wasn't. She was dancing! Shaking her hiney, bobbing her head, and shimmying her shoulders to the beat of Mr. Roboto. We laughed so hard, we scared her!

Rise & Shine!

Biiiiiiig Stretch For Such An Itty Bitty Girl!

Smile, Baby! It Looks Good On You!

He Is So Totally Wrapped Around Her Finger

She's also now attempting to crawl. I really didn't think she would because of the mic-key button. She can roll from her back to her belly, but oftentimes stops midway because of it. A piece of plastic protruding from your abdomen can't be that pleasant to roll onto. But yesterday, while in her crib, she decided to show off. She used the rails as leverage. After flipping herself onto her belly, and pulling her left arm out from under her, she placed her feet against them and pushed. I was standing beside her, and kind of ruined the moment. I panicked about the G-tube, and snatched her up before it snagged and dislodged. But still, she was the proudest little one year old in the world! Beaming from ear to ear, smiling at me as I freaked my freak. "Oh my GAWD! Did you guys see what she just did?!?! Little Bird crawled!!!"

She Never Met A Tubby That She Didn't Like!

Bath Time Is Da Bomb Dot Com!

"Don't forget behind my ears!"

She's definitely got a large enough audience to show off to! We spent the first week under lock and key, refusing to allow anyone without a medical license past the front door, decorated with a sign that warns the world to not disturb us. But we've since allowed the princess to begin receiving guests. This afternoon, she had her very first official play date with her friend, Brynn. She hit it off so well with Crystal's baby girl, and they were like two peas in a pod! She is such a people person that it's almost ridiculous. She loves visitors, and has been having a blast getting to know so many faces that have loved her for so long. She also continues to enjoy meeting new ones. Just before tonight's bedtime, we took her out to relax on the front porch, where she met quite a few of her oldest sister's friends. We've been trying to schedule a few outings with her, but the weather hasn't been cooperating with us. We're not in any rush, though, and when we are able to do it, it'll be that much more exciting. I continue to marvel at the social aspect of her personality. For as much as she's been thru, I wouldn't have blamed her if she chose to shut the world out entirely. Yet, she is the most cheerful, easy-going, and all around pleasant one year old I've ever known. She loves to cuddle (and OMG yes, you should be jealous, because she is a hugger!), and very rarely ever cries. And the reason behind why she is the way she is, is simple: Our PICU family. Hugs and kisses are all Little Bird has ever known. 

Lather. Rinse. Repeat!

High School Yearbook Blackmail

That's the way it ought to be. And if her siblings have any say in the matter, it's the way life will be for her. Number Five does have her moments of rivalry and jealousy, in which she asks me, "Why does my bay-bee need so much care?" But for the most part, she adores being a big sister. We've been including her in Little Bird's daily regiment as much as possible, in order to help her understand that she is just as loved and important to all of us as the baby is. She helps us mix formula, pick out the next day's clothing, and even takes photos of Little Bird for us (some that you're viewing were captured by her!). She's my supply organizer, and she assists us at bath time. We're also in the process of teaching her how to reconnect the HME, which Little Bird loves to pull off of her trach about a hundred times a day. I've actually started calling her Shadow, as in she's always right behind me. But she's learning everything we know, and absorbing info like a sponge. It's kind of cool to hear your four year old say things like, "The pulsox machine was beeping because the baby pulled the probe off of her foot". She can now identify certain items by their actual name, like hyrdrosorbs, posey wraps, and Farrel bags. It's like an episode of Doogie Howser around here!

Dreaming Of Angels

"I'm starting to see a pattern here...."

Number Four has been ah-mazing. Honestly, I'd be lost without my oldest daughter. For someone who says she doesn't like babies, and doesn't ever want any of her own, she's slept on the sofa every night since Little Bird was discharged. She claims it's because it's too hot in her bedroom, and she can't get comfortable. But actually, she's been guarding the baby, making certain that a lamp remains lit, and that no one messes with the emergency bedside bag. The twins can't walk past her without stopping to give her kisses. They also pity her when big, bad Mommy and Daddy poke at her trach and change the ties, and both have asked us to teach them her care routine. But Number One is a bit stand-off'ish. After Little Bird underwent the enterectomy, he couldn't stand to see her. Looking at her scar made him physically sick, near the point of fainting. It hurts him to see his baby sister attached to anything. Even though we consistently reassure him that she's fine, and not in any pain, he doesn't fully believe us. And according to society, sixteen year old boys are tough. They're not supposed to cry, and they're not supposed to feel anxious about having cases of medical supplies strewn around the house. They're not supposed to worry about getting attached and something terrible happening. But he does. We've decided that we aren't going to push him. If all he can handle right now is peeking into her crib while she's asleep, then so be it. He'll know when he's ready, and when he is, he'll be her biggest protector-just as he's been to his two other sisters.

Chillin' Wit Da Sistor...

...And Da Brudder!

"Daddy does my hairs..."

Blocking The Paparazzi

A few days ago, we accomplished our first outpatient appointment. Had it not been for the grace and expertise of Crystal, we wouldn't have made it thru the day in one piece. She accompanied us back to the hospital to see Little Bird's gastroenterologist. Twenty five minutes. That's how long it takes to situate everything properly in the van, make sure we forgot nothing, and finally stick the keys in the ignition. The stroller. An oxygen cylinder. The pulsox. The Joey pump. The portable suction machine. The emergency go-bag. The diaper bag. And any necessary paperwork. She is such a diva! We pulled out, and made it about five feet down the street when Crystal noticed that the baby's GT line wasn't flowing. We pulled over and began to take things apart. After five minutes of this, and in the sweltering heat, we decided to disconnect Little Bird's mic-key extension for the time being, and deal with it all when we reached the doctor's office. After all, this was a visit with her GI specialist. Yes, I recognize the irony, and yes, I'm ignoring it.We still have a pulmonology visit to get thru.

Following In Number Five's Footsteps

Move Out Da Way!

My Day Is A-OK!

We arrived at the medical center ten minutes early, or so I thought. But there is no such thing as early when you forget that if it took twenty five minutes to pack up, it's going to take another twenty five to unload. And so we ended up hauling ass to the doc's office like three and a half crazy people with too much baggage, with me texting the PICU along the way. "Little Bird is in the building!!"

It's All Fun & Games Until Somebody Passes Out In The Bumbo


"I'll help you..."

Love Is All Around You

Even Her Curls Have Curls!

Crystal deserves a raise for her ability to get us bumped into a private room in ten words or less. Apparently, all you need to do is whip out a suction canister and threaten to use it in full view of a packed pediatric waiting room, and they'll give you the keys to the castle! We went in, got the baby undressed (and suctioned-yes, she really did need it), fixed our feeding pump problem, and had a quick briefing with the nurse before putting Little Bird on the scale. She did lose some weight-half a pound. Though, all things considered, she's still thriving without concern. She's been super active since we brought her home.

Why MFH Owns A Gun

Best Friends Forever

Aunt Angie (our outpatient social worker) met up with us while we waited for the good doctor to come in, and so we were able to fill her in on the details of the last two weeks. She was elated to see how well the little Lady has been doing, but none moreso than Little Bird's GI. When he walked into the room, he nearly fell over! He said he was shocked to hear of her pending discharge a few weeks ago, especially after he pulled up her chart on the computer. But to see her in person is an entirely different reaction, by everyone. Doc was expecting her to be jaundiced, and have some tummy distention from liver swelling that is typical of patients who've been dependent upon TPN. But instead, he saw a pink midget, smiling at him and flashing her mouthful of teeth! Since coming home, we'd been instructed to increase her feedings by a milliliter an hour. However, when we tried this, Little Bird wasn't able to tolerate it. So we bumped her back down to where she was. But during this check-up, Doc K gave us the green light to go ahead and give it another shot. And so far, it's been a success. Slow and steady, but all progress is good progress.


"Hmmm! Now, if I could just get up those steps..."

One Puts The Mittens On The Hands...

As were were finishing up and dressing her, Angie put a call into Marie, who literally appeared in front of us out of thin air! "You'll never get away with being anywhere in this hospital without someone spotting you, and putting the word out that you're here!", they said. And they were so right. After catching up with our vent program coordinator, we made our way toward the PICU for a visit. Claire spotted us walking down the corridor, and Little Bird gave her the best. Smile. Ever! You'll have to forgive me, because I was so preoccupied with telling her (and subsequently, everyone else) about the events of the last fourteen days that I totally forgot about the camera. So, PICU family, if you're reading this....please send pics!!!

A New Tooth Everyday!

"I need some nite-nites, Momma!"

Claire was also in the midst of chasing patients, and so she agreed to meet us back in the unit. Once we got there, Tara stole our baby. But, try as she might to distract us by passing Little Bird around for cuddles and kisses, I still had the feed bag. Ha! Ha! But seriously, it was such a wonderful visit. We missed our people so much that even as everyone's pagers were beeping, alerting them to incoming patients, it was difficult to break away. And it was very surreal, standing outside of one of the rooms our daughter once occupied. The very room in which we almost lost her. For us, it will always be the place where our miracle happened. 

What Does She Think This Is? The Holiday Inn?!?!

"Come get some Birdy luvins, Sissy!"

"Put. The camera. Away!"

Finally, it was time to head home. Little Bird was exhausted, as were we, though we were hoping she'd sleep during the drive back. But she snoozed no longer than a catnap, or in other words, seventy percent of the car ride. We debated putting off her scheduled trach change because it had been such a long day for her. But honestly, trach care is worse. It's much easier to secure ties and a sponge ahead of time than it is to do it around the neck of a squirming and pissed off infant who now likes to bolt upright the minute we pull the Velcro. And she's catching on to us. We normally do all trach procedures right after her bath. Up until last night, she thought bath time was the bomb. But she's now wise to our smiles and sweet voices, and won't even shoot us a quick smile when we're washing her up. Poor Number Three got stuck being the odd man out. He was the only big brother available to help us keep Little Bird from standing up. 

Little Bird & Her Cousin Heather

A Motley Crew If I've Ever Seen One!

Huggles From Cousin Lilly

Oh, yes! Her standing up in the midst of any and all trach procedures has quickly become the new protocol around here. It all began last week. We usually wait until after her bath to do this because it wears her out, and so it's bath time, trach care, bedtime. I'd just finished lotioning and diapering her up at our makeshift station, i.e., the kitchen table. Little Bird is extremely sensitive about her trach, and when it comes to this, she tolerates no one. Not even us. MFH is stronger than me, and so it's his job to hold the trach in place while I take off the old ties and sponge, clean all around her neck, dry her off, and replace the dressings.She was sitting upright. The ties were wet. And I couldn't loosen them. I grabbed a pair of blunt-tip scissors, but when I grabbed the tie again, I pulled. Just enough for the trach to pop out. In that instant, MFH said so, in the sternest voice he could possibly use without making the baby cry anymore than she already was. And no sooner did he say it, did she bolt upright, onto her feet. We weren't holding her hands. It was allll her. 

Her Life-Sized Teddy Bear

"Which camera are we supposed to be looking at again?"

Catching Up With Cousin Kryt!

In a situation like that, you really don't have time to question anything. Our first thought was to get that trach back in and secure it. So I grabbed her chin, and pulled her head back toward the ceiling in order for MFH to observe the stoma. And he was able to successfully place it back in without a hitch. I got her dressed as quickly as my shaking hands would let me, and we ran her back in to her crib, where we immediately placed the pulsox probe. Turned out that her sats were fine, and thankfully it was more detrimental to us than it was to her. Chalk up another learning experience for Team Little Bird!

"Shhh! My stories is on!"
Suctioning On The Run!

Deep Thoughts (Guess What She Was Doing!)

"Mom, can we keep this bay-bee, too?!?!"

Sooooo Big!

And Little Bird isn't only famous at the PICU. She's also kind of a big deal in the neighborhood. People have been giving up their parking spaces for her. The day we brought her home, one of our neighbors gave up his driveway to us on an as needed basis, to ensure that Jessie, our night shift nurse, has a place to park. Had it not been for Jessie, you'd have nothing to read right now, because MFH and I would both be in comas due to sleep deprivation. So, give a shout out to this Lady, and thank her for rescuing us from sheer and utter exhaustion. And, from our four year old and her incessant questions of whhhhhyy? She saved us, countless times, and by way of remembering the little things that make the biggest differences. Like adult-sized wipes during some of the nastiest diaper blow outs you can imagine. Or, those tiny, yet amazing rubber stoppers that fit onto the tops of Little Bird's liquid medication bottles-lest we curse in frustration as we try to dose without them. Or even gloves when we suddenly run short and can't get our supplier to deliver them quickly enough. 

Bonding With Her BFF!
You Had To Be There!

"Nice toes, Girl-fran!"

Larry, Mo, and Curly!

She Didn't Even Make It To Her Crib!

I've Got The Golden Ticket!

Little Bird was also recently evaluated for Early Intervention. This is a program aimed at catching kids in need up on any aspects in their development that they may be lacking in. Because she was so premature, her risk of being or even falling behind is greatly increased. Two intake counselors met with us here at home, and we discussed the baby's development with them at great length. In order to qualify for these services, she'd have to score around that of a nine month old in any one area, be it cognitive, fine motor skills, speech, etc. Believe it or not, it was the whole speech thing that earned her a spot in the program. Though, she will need help in other areas, too. But nowhere near as much as we assumed she might. She's continuing to catch up in leaps and bounds, and amaze us everyday as she shows off new skills she learns. Tonight, she opened and closed her fist, mimicking us as we showed her "Bye-bye!"I know it doesn't sound like much, but the last two plus weeks have meant everything to our family. I don't remember a time in my life when I was ever this happy before. If we hit the Powerball tomorrow, it would not compare. Because we already won the life lottery. And there is nothing else in this world like it.

I don't know when I'll be able to blog regularly again, and I certainly don't think I'll ever create another post as large as this one. Spare time is really hit or miss these days (I've given up hours of sleep tonight in order to finish this). But I will do my best to try and update as much as I can, even if it means smaller entries with a lot more grammatical errors, or simply just pictures. This much joy must be shared. I wish you all could experience what our family is feeling these days. Like driving down the road during a rainstorm, with the windows opened and the radio playing your favorite song. Warm socks, straight from the dryer. Your most favorite food when you're ravenously hungry. Or that absolute comfort when your alarm goes off first thing in the morning. Yeah, no. Not even close. Life is so good....

share on: facebook