Saturday, January 31, 2009

Rocky Balboa, Meet Faith Edona!

"I fall, I stand, I trudge on.
I gain a little, I get more eager and climb
higher and higher to see the ever widening horizon.
Every struggle is a victory."
-Helen Keller

No longer confined to the rectangular carpet, when Faith is off of the vent she is connected to fifty feet of oxygen tubing and pretty much has free rein of the downstairs. Our house is small enough that I can run upstairs for a few minutes and still hear her downstairs. While Faith is mobile (crawling, scaling walls) she can only go as far as her tubing will allow her (although she does pop off and keep going....), so when I do run up the stairs she's usually content playing in the dogs' food or opening and closing kitchen cabinets.

The other day while went about the monotonous household chore of emptying the trash in each room of the house, as I emptied Faith's pink, butterfly-imprinted trash basket, I turned around to see my daughter at her door, smiling very matter-of-factly.

My heart skipped a beat.

How on earth did she get up here? Did she.....? No...she couldn't way...

Y'up. She did. Just take a look for yourself:

Perhaps more appropriate music would be "Ain't no mountain high enough..."

Looks like it's time to buy another baby gate. Looks like it's time to celebrate another mountainous milestone reached!



On another note (I wrote the previous stuff yesterday), if I wrote about each time Faith was sick every single post would be about her fighting off yet another infection.

No kidding, the girl is sick 3/4 of each month. Right now we are walking the very thin line of hospital vs. home again. It would only be fitting that Faith spend Super Bowl Sunday in the hospital, wouldn't it? Afterall, it wouldn't be the first or the second time!

We probably had the worst night we have EVER had last night (and that says a lot!) but we reeeeeeeeaaaaaallly don't want to take her in, so once again we are trying to manage it all at home. But as some of you commented last time, ultimately Faith will make that decision for us. :) So prayers and good vibes please!

Thursday, January 29, 2009

"angels can fly because they take themselves lightly.."

This is for all of our compadres at St. Joe's:

(All exclusiveness aside, it's a NICU thing, so unless you've been there you wouldn't understand!)

Sunday, January 25, 2009

Sunday Sentiments...

This was in last week's Sunday paper, and I just HAD to share it with all of you.

For those of you with eyes like mine (sorry, I'm not very good at resizing images) it reads: "someday you'll be a teenager, and you'll want to sleep all the time...and then I'll have my revenge..."

Absolutely perfect!

No excuse for not updating this week. No trips to the park today, the reality of January set in today, bringing gray skies and falling snow (but that's OK, we're some of those sick, twisted people who actually enjoy days like these, as long as we're allowed to be cozy indoors).

Hard to believe last week we were doing this:

How wonderful it is to be blogging about the weather and not some crisis (knock on wood)...let's enjoy this while it lasts!

Have a WONDERFUL week!

Jen & CO.

Wednesday, January 21, 2009

Gone to the Dogs

We long for an affection altogether ignorant of our faults.
Heaven has accorded this to us in the uncritical canine attachment.
~George Eliot

As Faith approaches her second birthday, we've been getting a lot of questions/comments on whether or not we plan on adding to our family.

"Faith needs a brother," a friend from TCH remarked a few weeks ago.

What these people don't know, is Faith has two very stinky and wild brothers already.

To her, she is just one of the pack!

The other day the three of them played "peek-a-boo" through the doggy door for twenty minutes (and in toddler time, that's impressive!)

"Hey no fair! You get to be outside and I don't?"

"Just because I am wearing a pink bow in my hair doesn't mean I can't be one of the boys!"

"Say the magic word...!" (and yes, I am fully aware that my child has a mullet....I know I am cruel..but what else are we going to have to bribe her with when she's a teenager?)

"Open sesame!"

Buffalo offers a pittance (and yes, that's our dog, Elway in a "no-lick-collar." You don't even want to know..I swear we have the most accident prone dogs on this earth!)

Faith thinks it's funny when everyone else eats but her (here's she's offering Elway a piece of a Pringle). I've been meaning to get a picture of Faith in her new favorite pastime; playing with the dogs' food bowls. Yes, the child who freaks when she touches any sort of humanely edible cuisine, loves to get her hands slimy with regurgitated dog water and grainy kibbles and bits. Mm-Mm good!

When Faith received her trach we were cautioned to avoid exposure to animals because of the possibility of hair getting into her stoma (trach opening). Yes, I am sure there has been lots stray hairs that have made their way south towards the lungs, but sometimes the pros outweigh the cons. And we know she thinks it's worth every strand of irritating dog hair!

Thanks for checkin' in today!
Jen :)

And yes, you may have noticed Faith is off the vent! We are finally back to her "baseline" of being off the vent throughout the day! We are not "weaning" we are just "maintaining" at this point, but any rate, any time she can spend untethered is HUGE in our house!
(and yes, we will be addressing the "sibling" question more thoroughly in the next coming months...and no it's not what you think!)

Sunday, January 18, 2009

Carpe Diem

The laundry is done (well...almost), the carpet is vacuumed (for now..with two hairy dogs the job is endless), and the sink is finally clear.

I just sat down to do my weekly blog update and glanced at the temperature gauge on my desktop. It's 60 degrees and it's January.

An update will have to wait my friends, I am taking my girl and WE are going to the park!

Hope it's equally as beautiful where you are!

Jen :)

Sunday, January 11, 2009

A Different Sort of Warmth

Dear Faith,

During the 14 months you were hospitalized one of my coping mechanisms was picking out clothes for you. I will never forget when you were first born how friends and family sent care packages of "preemie" clothes. I remember holding up a preemie sized outfit to your little 1 pound body, you could have fit in the arm hole with room to spare.

As you grew, I found comfort in buying clothes every month. It didn't matter that I was buying a newborn size for my 9 month old, I was just happy to be doing it.

The purchasing process was always a little interesting. Head into any baby department in a store and you are bound to find a menagerie of moms with kids in tow. Some of these moms were stressed to the max, trying to complete the task of picking out clothes while refereeing a fight between siblings or calming a tantrum. While other moms (usually new moms, I could tell) sublimely walked through the aisles with their babies clutched to their bosoms, still imparting that postpartum glow.

It would not be honest of me to say that I wasn't jealous of these moms. They had something I didn't. But as time went on the feelings of envy subsided and I just became indifferent to them. I had grown to accept my new brand of motherhood and once again I was just appreciative that I was still in fact, a mother.

There was one section of the store that did stir up emotions more than any other. No it wasn't the baby food aisle (which is still obsolete for me), but the circular, aluminum rack of seasonal jackets. We're not talking any jacket here. It's the puffy kind that makes children look like stuffed marshmallows and are intended to withstand blistery cold days, that became the epitome of what it means to have a child in the hospital for 14 months.

A jacket symbolized something that wasn't available to my child. It wasn't a fashion statement, it wasn't just a collection of fibers that would keep my child warm, it was freedom. Kids who had jackets weren't confined to hospital rooms. Their moms would take them wherever they pleased, whenever they wanted.

I know I am not the only mom to feel this way. Across from your room in the hospital, a little boy lived in the same confines for 22 months. I used to naively think that 14 months and 22 months were relatively the same amount of time. And then I had you home for the 8 months in between and I saw how much life you had lived in those 8 months, and I knew that there are no comparisons...22 months spent in a hospital is eons apart from 14.

About a month after this little boy went home, his mother brought him back to visit. The first thing I noticed when I ran out of the room and embraced his mother was his toddler-sized camouflaged, winter jacket. While there was a language barrier between us, a thousand words were spoken in that moment. I pointed at the jacket with enthusiasm and his mom smiled widely at me and with a reassuring head nod, told me not to worry, that one day we'd know the freedom of jacket too.

This past fall as the leaves began to change, although you had already been home for several months, I knew there was something I had to do to vindicate your freedom. So one early morning I headed out to Wal-Mart and went directly to the part of the store that had been off limits to me for far too long.

The jacket I found was just as I had envisioned. Pink and puffy, a stuffed marshmallow surely you'd be.

In an ideal world this story would end with a picture of you aglow in your winter coat.

The great irony is that you hate your jacket. The multiple times I have tried to put it on you, you have thrown temper tantrums of all tantrums, kicking, screaming (or what appears to be screaming) and turning blue in the process. Not like it matters, the only place you go in the winter is to the doctors office, so a winter jacket is pretty obsolete anyway.

So, the jacket sits in your closet, tags still attached, providing us with a different sort of warmth. And that's perfectly OK with me. After all, this isn't really about a jacket, it's about restoration, opportunity, freedom and above all it is a symbol of hope; of what was, and what is to come.

Love You Always,
Mommy & Daddy too

Saturday, January 3, 2009

Home :)

Ringing in the New Year: I just happened to have a "party blower" (very randomly) in my purse which found great purpose on New Year's Eve. Look at Faith in her big girl bed! Because of her crib-phobia (try explaining that one the charge nurse) Faith was once again allowed a big girl bed, which was nice for us big people, too. :)

Sorry I haven't posted in a while. Just wanted to let you know we are home. :) Faith is extremely exhausted, irritable, and sleep deprived (as are we). I think she's having some "riod rage" (Tina, you'll appreciate that) b/c we've never seen her so restless before (will explain more later...)

Respiratory wise Faith is doing MUCH, MUCH, MUCH better. Turns out she was fighting a virus of sorts which basically knocked her out for a few days.

If you see the sandman tonight please nudge him to come sprinkle some extra dust over Faith's bed tonight (last night she FINALLY feel asleep at 5am...yes...she was up the entire night). It's already been a rough go tonight and it's not even 10 yet.

Thank you for your prayers over the past week, we know they really helped in aiding Faith's quick recovery!

Jen :)

PS: I just turned on my phone this afternoon (forgot my charger at the house) to a host of text messages and voice mails. I just wanted to let those who tried contacting me that I did not mean to neglect you and will reciprocate communication asap (just wanted to throw that out there for those of you who might think I have time to update the blog but not to return calls...but then again I know my friends don't keep tabs like that.) ;)

Friday, January 2, 2009

Just a quick update to say that Faith is doing A LOT better. The increased vent support, steroids, and antibiotics really seem to be doing the trick. We're hoping to get out of here this weekend....afterall we have our own PICU at home, so as long as the IV antibiotics are switched to "oral" (meaning g-tube, of course) I think we can manage. :)

So we'll see!!!!

Thanks for checking in on our littler girl!
Jen :)