A Life In Numbers: February 2012

On Tuesday afternoon, we met with Little Bird's medical team for the last time. One final gathering to ensure that everything is continuing according to plan. Our nurses are scheduled. Our equipment is here. Supplies are en route as I type this. The day of Little Bird's discharge is fast approaching. And when it finally does happen, we'd have spent a grand total of two hundred and forty one days inpatient. Almost eight unimaginable months. Nearly the length of a full term pregnancy. But who's counting?

Let The Countdown Begin!

A Gift From Trennor

Pet Therapy With Gidget & Michele

"Hey! I is bigger than dat puppy!"

"Your doggie's got great taste in hairstyles!"

As you can probably gather from the pictures, we've had an insanely busy week preparing for this event. We've literally been waking up, getting dressed, running to the hospital, taking on the world, coming home, and collapsing on the couch before getting up and doing it all over again the next day. Sounds repetitive, but I can assure you, it's been anything but boring. From the minute we arrive, we're on our feet the entire time until we physically can not stand up anymore. Little Bird's care is very demanding. Suctioning as needed, diaper changes, mic-key button care, take her temperature, get her dressed, administer both oral and inhaled medications, G-tube feeding, trach care, therapy (speech, physical, and occupational), and an attempt at the bottle if she can tolerate it. Every four hours. Around the clock. Throw in time for baths, cuddles, and play, and you've got yourself a double dose of parental exhaustion. And this doesn't account for the the weekly routine of outpatient appointments, touching base with her medical team, tracking and stocking supplies, changing the trach and the vent circuit, and exercising the equipment.

Trendsetting

Ready To Take On The World!

Bath Time (It's Definitely A Process!)

"Nooo! Not The Green Wire!"

The lack of enough hours in our days combined with a recent conversation with one of our nurses led me to the epiphany I had last night. While flaunting some pics of Little Bird, I came across one of myself taken a few short days before she arrived. A baby bump pic that came hand in hand with a certain realization. My belly wasn't very big. In fact, I was barely pregnant.

July 5th, 2011-26 Weeks Along

I know a lot of Ladies out there who have loathed getting round when they carried their children. But for how much I hated the morning sickness, or the hormone fluctuations. Or the crazy skin changes. Or the discomfort. Or the heartburn. Or the leg cramps. Or the sudden narcolepsy. I kind of liked the part when I'd gain all that weight. That point where you could actually get away with looking cute in a stretchy tee, and show off your great expectation. That proof of life. And no matter how many times you've been thru it before, feeling your child kick and wiggle never gets old. But with Little Bird's pregnancy? Her placenta was anterior. Even her strongest, Chuck-Norris-Approved, round houses were more like flutters.

Her Seal Of Approval

E=MC.....Squared!

Teamwork

That Wasn't So Bad!

For how bitter it was to have been reminded of all of that, it was also very sweet. Because in our case, she and I got to experience our prenatal milestones in an inconceivable way. A backwards pregnancy. I may not have had the opportunity to see her face in 3-D imaging beforehand, but I was able to hold my daughter's hand during her twenty sixth week. I used to feel cheated out of the nearly fourteen weeks that I should have been able to carry her. But somehow, I've since been given twice that length of time. Ironically, I am still able to swaddle this tiny bundle of sweet love, and hold her close for much longer than had she'd been full term. And when we rock each other to sleep, she curls herself in toward me, navel to navel. Though I physically could not support her, or keep her safe then, I am now. Through the knowledge I've obtained during the last eight months, I can nourish her. I can breathe for her. I can protect her.

Gettin' Her Jane Fonda On

Baby Blue

"This diaper isn't going to change itself!"

Visiting With Shooter

Last night, the staff asked us how confident we're feeling about all of this. Ninety nine percent. That's where we stand. I now know better than to ever say a hundred. Because Little Bird guarantees that she can and will throw us a curve ball at the most unexpected moments. Like two weekends ago, when her trach unexpectedly occluded again, and a lazy Saturday went from peaceful napping to chest compressions in a split second. This was the fourth time we've experienced that particular scenario, and it surely wasn't the last. Even though it will always scare the living shit out of us, we've somehow managed to trigger something inside of ourselves. A voice that says don't panic...you know what to do...give her what she needs now and twitch later. It is an acquired skill, much like keeping your cool in the delivery room.

Being A Tomboy (Thanks Archie!)

"Does This Color Make My Diaper Look Big?"

Thick As Thieves

A Sign From Above

"Does my hairs look otay?"

"I tink I need some suctions. Here ya go!"

"I don't always drink formula, but when I do? I prefer Dos Alimentum. Stay thirsty, my friends!"

"I just gots to be meee!"

We are days away from one of the biggest milestones of our lives. But our story will not end when we cross the threshold of this house with Little Bird. I'm going to continue to update on everything life throws our way. Our first steps in this new world. I've never been more proud of anything than I am of this family. All of it. The good and the bad. We're far from perfect, and completely crazy. But if you all stick around a while longer, you'll get to witness what makes us tick, what drives us to the brink, and what binds us together. Eight very different personalities under the same roof? Now that's something to write home about!

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Remember when I introduced you all to Devan? Well, On December 19th, Devan's cousin, Courtney, gave birth to a beautiful baby girl. This family can really use some help right now. Baby Brenna was also born with super powers. An extremely rare, and very serious medical condition known as Harlequin Ichthyosis, her skin lacks a certain protein essential to protecting her from infection. She is also very prone to dehydration, breathing difficulties, movement restriction, and inability to regulate her body temperature.

After having spent the first several weeks of her life in the NICU, Miss Brenna was finally give the go-ahead to come home. But earlier this week, she caught a stomach bug. On Wednesday, she was readmitted to the NICU. Even though she is grateful for this medical intervention, I know Courtney is also pretty torn up, and sick with worry. Brenna's tiny, six pound body already expends so much energy constantly regrowing new skin cells that this poses a really serious threat to her health. If you have a minute, can you please say a prayer for this precious little girl and her family? It would mean the world to them right now.

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