Pretty much normal baby stuff!

"So... I've been meaning to ask, but felt weird - how is your daughter doing?"
"Great! Pretty much normal baby stuff!"
"Really?"
"Really!"

It's a conversation I'll never tire of having... I can have it over, and over, and over again. It never gets old!

We're taking it as it comes, soaking it all up - and every once in a while, thinking about what a wild, mucked up summer it was. In a way, the entire summer/fall gets compartmentalized; neither Sara nor I think too much about the NICU days. Instead we are focused on normalcy, or as close to normal as having a newborn and a toddler can be!

I've been meaning to get a post up for weeks now - the next thing you know, Thanksgiving has passed and Christmas is almost upon us! Straight to the point here - Lily is still doing wonderfully... she now weighs TEN AND A HALF POUNDS - almost six times her birthweight!  She is wow-ing her doctors with her neck control, ability to roll over, and visually track objects (like mom and dad!) from across the room, without our even making sound. She can see. She can hear. She can smile, and she can coo.

A while back - what seems like an eternity ago - I wrote a list of doctors' quotes on a very, very terrifying day. Today I can re-write the list - and these days are filled with much, much better days.

"You guys are really lucky. She looks great, you can't even tell she was preterm."
- Lily's pediatrician, at her first checkup

"That's unheard of, even for a fullterm baby at this age."

- Lily's pediatrician, on her rolling over from back to front on November 15th

"I wouldn't write it down, but I've seen a lot of preemies, and this is going to clear up."
- Lily's retinologist, on what he thinks about her stage 1 r.o.p.

"I think you're holding a miracle in your arms."
- Lily's Neurologist, at her 5 month checkup

"She made it on the charts!"
- Lily weighing 10.5 lbs on her 5 month, 4 day checkup

Having Lily home - it puts me in a perpetual state of awe. Just sheer, absolute amazement that Lily is home, she is alright, and she has shown no noticeable developmental delays. She's alert, interested in her environment, she smiles, recognizes us, she is just on the verge of laughing - she eats like a champ, sleeps well (through the night most nights, now!), and loves watching her big sister run around the house.

The biggest difference between raising Addie (who was full term) and raising Lily is that now, we're sailing in uncharted waters. With Addie, sure, we were first time parents... and along with first time parenthood comes all sorts of uncertainty. But ultimately, the first time around, we pretty much figured (assumed?) everything would be ok, as long as we were careful and didn't do anything stupid - feed, new diaper, sleep, start again.

This time around there is a lot less certainty around things. What will Doctors say? Are we not noticing something subtle about her muscle tone, maybe something else? What should we be expecting? She's five months old... but not really. Kinda-sorta... she's five months of age, but she (her "adjusted age") is two months, since she was due on October 11th. But that doesn't mean we should necessarily expect her to be two months old 'developmentally'. And that's just it. We don't really know what to expect - but we are very, very hopefuly that everything will turn out OK for our little girl, and that there won't be any lasting effects of her early birth.

So if it's uncharted waters we're sailing, then we'll map the course as we sail - and so far, so good! Sara and I have learned that with preemie parenting - hope still matters. It doesn't just end when you walk out of the hospital - the crisis ends, but hope continues - hope that Lily will have a normal life. I am ecstatic to say that this hope will, slowly but surely, turn into confidence! Every time she smiles, every time she follows us across the room with her eyes... more confidence. Writing this blog post - looking at her pictures - more confidence.

Thank you again, everyone who follow's Lily's story this past year - for your support, thoughts and prayers - I've said it before, and I'll say it again - they worked a miracle!

One month home!

We've been home for a little over four weeks, and things are going great! Lily is doing really well - she sleeps well, she eats well, and she is rolling over from her back to her front - something her pediatrician said is "unheard of" for her developmental age - she is responsive to her name, and she is smiling! Now 17 weeks old (3 weeks adjusted), Lily weighs 8 pounds, 4 ounces - almost 4 times her birthweight.

We missed the worst of Hurricane Sandy - we kept power and our new foundation walls withstood the test, not a drop of water in the basement. We are very fortunate the storm didn't make landfall north of where it did.

This entire summer/fall has been a huge reminder of how fortunate we indeed are... Every time I look at Lily, I am dumbfounded by the fact that she is the same little girl who fought for her life for 100 days. She is a real miracle!

I had hoped to get a bunch of pictures up, but didn't have time prior to a business trip - am at JFK now, off to Guatemala and Costa Rica to visit coffee/sugar farms and mills. When I get back I will load up a bunch of pics- both of the family, and of the trip! In the meantime, I sure am going to miss my girls!!

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!

Day 85 - 95: Finish line in sight...

First off, Lily is doing marvelously! She has been on 21% oxygen (room air) for the past two days - first time in her life!! She is now up to four full bottles a day... once we get to 8, we go home!

And she is six pounds now! She has been weaned off of her diuretic, and weaned from sodium. Her hearing test came back clear! Unfortunately she does have stage one ROP, but we are praying that it does not progress. ROP (retina related) is sometimes caused by the added oxygenation... it is somewhat common in preemies. Often, when you see kids with coke-bottle glasses, they had ROP as infants. It can be corrected with laser surgery if necessary, but we are hopeful that it will self-correct now that she is requiring less oxygen. Considering the level of ventilation that lily required for so many weeks, we are very thankful that it is only stage 1, and not worse.

It looks like she may come home on oxygen, but there is also a chance she could kick the cannula before then. Nurses are saying she MAY come home on Monday... amazing! To be at the end of this long marathon is a great feeling. It's what Sara and I are focusing on, and it's what keeps us going through a particularly stressful past week.

On that note, you're not going to believe this. Sara and I are turning into living proof that bad things happen to good people. We are upstanding citizens, pay our taxes, give back to our community, and are good parents. But some people just can't catch a break! This year, Sara and I are "some people."

In last Tuesday's rain/wind storm, our foundation and basement wall collapsed. Total cave-in. The power company cut our gas service, hopefully today it is turned back on. Sara and Addie have been staying at her mom's, I've been shuffling  between home, work, and my mother/father in law's place. The building department is heavily involved in the re-build, so we had to get an architect to draft up plans for a new wall. Structural engineers, electricians, masons, the list goes on. I've gotten a serious crash course in general contracting... Thank God we have family in the business to steer me in the right direction. All excavation has been done for the new wall, and the building permit is being issued today. All-in, the work will cost about 20... icing on the cake... insurance denied our claim. Twice. They are crooks. Coming up with all sorts of excuses not to pay the claim. Somehow they are calling it flooding/groundwater related even though there was NO flooding and the 8' hole dug alongside my house has NO groundwater in it.

We are fighting it tooth and nail. We have hired a lawyer, and are suing the insurance company and the engineer who originally inspected the home and wrote "the foundation is sound" in his report. The lawyer thinks we have a case.

To say the least it is very, very, very stressful. Lily helps put it all in perspective, though. Walls can be re-built. Money can be re-earned. The only thing that matters is that my girls are OK -thank God my girls are ok.

In a way, this feels like being in the last mile of a marathon that has suddenly gone up-hill. But the finish line isn't any further away... It's just a steeper finish than originally planned. In two weeks, I will be sitting on my couch with Sara, Lily, and Addie - there will be a nice shiny new basement wall holding up the house, and all will be good in the world. Two weeks. That's all that is left in the marathon. It's just a matter of pacing ourselves and not running out of steam before the finish line. We can see the ribbon... and are SO ready to break through it.

Sara and I are keeping our spirits up. No use getting down in the dumps. LILY IS  COMING HOME SOON, AND THAT'S ALL THAT MATTERS!!

Day 80-84: Proof of miracles

I sit here in awe, not sure what to write because I'm simply shocked by how much Lily has progressed in the past month! She is, in short, doing marvelously! And she is thriving. AND WE ARE GETTING READY TO TAKE HER HOME! We don't have a date yet, but doctors are saying "soon, within a couple weeks - get everything ready".

Lily will be receiving her pre-discharge exams this week- echocardiogram, blood workup, brain scan, hearing test, and eye exam. Fingers crossed on each! Doctors are also staring to wean her from her diuretic and sodium/iron supplements, preparing her for au naturale living :)

On the pulmonary side, things have also shown remarkable improvement in the past week! Doctors are weaning her, slowly but surely, from the nasal cannula- weaning her from oxygen entirely. Astonishing! Her pressures are now at 1/8 liter... an adult typically gets 2liters of pressure, for comparison's sake. Doctors are warning us that she could come home on oxygen and Pulse-Ox monitor, but at the same time are also saying she might kick the cannula before she leaves. So here's to kicking the cannula!

And - Lily is no longer desat'ing. When she eats, while she sleeps, or while she's awake- her blood oxygen has been in the 97-98% range! Her lungs sound clear, and in short- she is breathing really well. Considering her lung condition, BPD, has been by far her biggest challenge, she is without question winning the battle for her life. And it is awe inspiring to look into her eyes.

She is eating well, and has moved successfully to two whole bottles a day, supplemented by her feeding tube. Tomorrow she may get three bottles, depending on what they decide at rounds. She tires out a little bit during her bottle, but whe. I give her a burp she wakes up and takes the rest. And she is gaining well! She weighs 5lbs 4oz now. More than triple her birthweight, in 10 weeks!

The thought of bringing Lily home is so, so exciting! Addie is excited, Sara is excited, and I am excited. I think even the cats and dog are excited. It's been a wild summer, that's for sure. A summer of stress, a summer of fear, a summer of blood transfusions, blood acidosity, tpn fluids, antibiotics, diuretics, supplements, ventilators, oscillators, incubators, oxymeters, echocardiograms, SiPAPs, CPAPs, pneumatoceles, atelacteses, PDAs, and brain scans.

But most of all, the summer of 2012 was a summer of HOPE! 

All the medical jargon, all the fear, all the anguish will one day be a distant memory - but hope lives. Like a delicate flower, HOPE LIVES!

Our hope... our Lily of Hope. She has overcome every odd, defied every statistic. Her survival is more proof than I will ever need that miracles DO happen- every day. In little things, and in big things - miracles exist. 

The next time you feel overwhelmed, at the end of your rope, or standing on the edge with a piece of dental floss holding you back from the abyss... remember Lily. Remember Hope. Because miracles exist.

I'm certain of it...  I've held one in my arms.

Thank you all, again, for your support and for following our family's journey this summer. The outpouring of love and well-wishes has kept us going through thick and thin. Knowing that we were not alone during the scary times helped tremendously. Thousands of people all over the world have been thinking of lily,  praying for her, and sending positive energy her way. I have no doubt in my mind that this has helped her and pushed her along. Your support has been part of what will make this story one with a very, very happy ending. Thank you!