Home sweet home!

Life is good! We've had Lily home for a little under two weeks, and she is doing marvelously! She is eating well, sleeping well, and is starting to smile - we're working on catching it on camera. Addie loves being a big sister, and adores Lily. Life, at last, has returned to normal. I took a couple of weeks' vacation from work to hang out with Sara, Addie and Lily - it is hard to come up with words to describe how fantastic it's been. The world has again shifted, only now, back onto its axis.

For the most part, bringing Lily home has been like bringing a 'normal' newborn home. She eats, she sleeps - you know, normal baby stuff. There are a few differences, though, in bringing a preemie home - some subtle, some not. Lily is the size of a newborn (gaining nicely, now 7lbs 8oz!), but she is three months old.

We've noticed that she seems to have more head, neck, and motor control than a 'regular' newborn. When we put her down on her tummy, she can lift her head up and look around - most newborns wouldn't start doing that until 4-6 weeks. She sleeps very soundly, and doesn't cry much unless she is hungry or wants to be held. Also, she is easily satisfied - she doesn't fuss much.  It took her about 1 week to figure out that if she cries, we will pick her up - she loves being held. And we love holding her :)

Lily takes prilosec for acid reflux, which gave us a little scare when she first came home. At one point, she reflux'ed and started choking  (stopped breathing)... we sat her upright and slapped her back until she coughed and cried. Quite a scare - it happened later that day too, the second time (fortunately) at the pediatricians office. Her doctor told us to do just that - sit her up, slap her back, and she will instinctually either cough or puke to clear the reflux from her throat.

 That brings me to another difference about bringing a preemie home - we don't leave her alone in a room for more than 30 seconds, awake or asleep. The risk of reflux/choking is too great - it will take 3 or so months until she stops refluxing, docs said. We have a video & motion monitor called AngelCare that detects Lily's breaths and alarms if after 20 seconds of stillness. It provides a huge amount of peace of mind - and allows us to sleep (if only for 3 hour shifts!)

Thank you again all for the support throughout the summer - this story had a happy ending, and everyone's prayers and well wishes helped that happen!

Thank you Aunt Julie for the sign, it is still hanging!

Life is good!

Love my girls :)

Day 100: We are HOME!!!

We are home! After a 100 day stay in the NICU, Lily has won her battle. She was discharged today at 2pm, and have been doing wonderfully since we brought her home. Addie loves her sister very, very much :) Today is one of the happiest days of our lives!!!! It has been a long journey but here we are - thanks to Lily's amazing strength and determination as well as the support, prayers, and positive energy sent our way, we have made it. Thank you all for following this story. It is a story that had its ups and downs, but the past 100 days are ultimately proof that miracles exist all around us - they happen every day. One is in Sara's arms right now, and the other one is in a yellow shirt running around like a tornado with excitement that her sister is home!

The next few days we have follow-up appointments with the opthamologist, cardiologist, neurologist, neonatologist, and endocrinologist. So far, all nurses and doctors have said Lily is doing marvellously - the nurse who discharged us, who has worked in the NICU for 25 years, told us that Lily is one of the most healthy looking preemie babies she has ever seen! I will continue to update the blog with Lily's story through life. Every step will be a miracle. And we are so, so grateful - words can't express.

Thank you Dr. Uduak - Chief Fellow who played a very large role in saving Lily's life

We bumped into Dr. Alpin in the elevator, an attending physician
Thank you Dr. Alpin, for saving our daugther's life

Walking out of the hospital - a truly euphoric feeling!

Off we go!

I could not properly end this post without thanking everyone who works at the Maria Fareri NICU at Westchester Medical center - the dozens of NICU nurses who took care of Lily, the attending physicians, fellows, nutritionists, respiratory technicians - my daughter's life was literally saved by hundreds of to the most amazing people in the world - true miracle workers!

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!