Homecoming - TOMORROW!

Miracles happen,

Hope matters,

Weakness is not an option...

And never, never, never give up.

After 100 days in the NICU, Lily is being discharged on Thursday! In the past week, she kicked the cannula, and today she kicked her feeding tube! At long last, we are bringing her home. Over the past three months our family has traversed the darkest of canyons; but the warm sun is now shining on our cheeks, and it feels so, SO GOOD!

This past summer has brought many life lessons - one that always comes to mind, and I've often repeated on this blog - hope matters. When I started writing this blog, 98 long days ago, I had no idea what kind of story it would be. I knew very little apart from the frightening statistics the docs rattled off. I just knew one thing- my daughter's battle would be a story of hope. And hope, in every sense, matters.

Lily's battle has also been a story of courage, and a story of faith. But not "faith" in the traditional go-to-church sense. That's not what I mean when I say "faith". When I say faith, I mean faith in yourself... in your ability to stay strong, (still keep your sanity!), and in your ability to persevere even when faced with what seems like tremendous adversity. When you feel the emptiest, when the odds seem stacked against you, or when it seems like hope is fleeting... that's when need most to believe in your inner strength. When there is nothing but a piece of dental floss to hold on to... grab the floss, and tie in. Because that string - that very last string... the one holding you back from the abyss - that's the strongest string. And others are depending on you to hold on to it. That's some of what I've learned these past 99 days.

And though the battle may be coming to a close, the journey isn't over. The book is not done - it just had a rough first chapter! As to the rest of the book - I have no doubt that miracles will continue to happen. And we will appreciate every step of the way - every smile, every laugh, everything.

During the early days, I never posted pictures. But today I'm posting a chronicle of Lily's battle from day 1. Some of the early pictures are jarring - my intent is not to upset - just remember.. she is coming home on Thursday! I'm posting these to show you how much your prayers and positive energy have helped- to show how far Lily has come. To show that miracles exist... and to show that hope matters.

When Lily was born, Sara and I were scared. We were empty.
These were the darkest days of our life.
Lily is four days old in this picture.

She got as low as 1 pound 5 ounces. We didn't know if she was going to live or die.
We prayed a lot.

Her skin was so fragile, just a few cells thick. Nurses told us it was like a wet paper towel.
We couldn't move our hand along her skin - only brief touches.

She was very dark in color due to her her low blood oxygen content.
Her chest jiggled up and down from the ventilator.
These were the dark days. 

This picture was taken about a week later - July 8th.
Getting bigger, a few grams at a time! Skin tone still dark due to oxygenation issues.

Blood transfusion, antibiotics, TPN fluid, and sodium chloride.
So glad this machine is a thing of the past!!!!!

The sheer look of determination in her face - she was NOT going to let this beat her.
She weighs about 2 pounds in this picture.

Late July / Early August - made it to the CPAP for the first time!

We were finally able to hold her!
I remember thinking we'd made it through the thick of things here. Hah!

Snuggles with Mama
(looks like she's on about 45% oxygen in the background... )

Mid-August, she had to go back on the ventilator.
This was when the docs told us she was back to a 50/50 chance. 

It was heartbreaking watching her fight the ventilator.
But we stayed full of hope. Full to the brim with it, in fact. 

And then she fought back from the brink for the second time - back to the CPAP!
The strength of this child amazes me. Strongest child I know. 

Day one on the nasal cannula - huge step for her!

Gaining weight! She must have been about 5 pounds in this picture.

A dad in heaven...

Kicked the cannula last week - HOORAAAY!!!!

And once more for good measure... Lilliana Hope Schlubach aka. the warrior
Born June 26, 2012 at 1 pound 12 ounces
Coming home October 4, 2012

Thank you all for following Lily's story. Thank you for your prayers and support - thank you!