All good news!

Nothing but good news with this update! Lily has taken some great steps forward during the past few weeks - she is starting to explore with her hands, a huge milestone! She's grabbing at toys and pulling her bottle towards her mouth. She's building coordination and keeps herself entertained when she has a few things to explore with her hands.  She's vocalizing a lot more, starting to coo a lot, really just all fantastic things. She can recognize people - and she gives her physical therapist dirty looks from across the room! All in - apart from her PT sessions - she's a really, really happy baby :)

Having a blast pulling Addie's hair

The PT and stretching at home seem to be working well. PT once or twice a week, stretching at home 7-9 times a day. Recently we've noticed a lot less tightness in her hips, legs, ankles and arms which - all very, very good signs. We've been warned that the tightness could return, but the fact that it has dissipated is really great.

We've scheduled the MRI for March 19th, and we'll have results by the 28th. I hate the fact that she's going to have to be sedated for the procedure since she needs to be perfectly still. But it is what it is. Sara and I are taking the day off work to take her in.

Oh... great news - Lily's ROP (retinopathy of prematurity) has cleared up! Another miracle to add to the books.... another thing to be thankful for!

What else - she's been discharged from her endocrinologist! One less doctor is always a good thing. We're in the process of changing neurologists - the guy we've had since the hospital doesn't take insurance - any insurance. We're going to go in-network since we'll going to be tracking this hydrocephalus once every couple of months.

It has been a crazy ride, a really wild one - my head spins even thinking about last summer, to think how far she has come! She is hitting all of her milestones - I can't even begin to grasp how amazing, how miraculous that is. A huge thank you once again to everyone who's been following Lily's story and keeping her in your thoughts and prayers - here's proof they worked!

A Test(ament) of Hope / uncomfortably numb

  

First off, the good news - Lily is still developing wonderfully, she is meeting all of her milestones! She is just under 13 pounds, she smiles, she's starting to laugh. She's alert, loves watching the world around her, and is starting to grab and swat at things. She eats like a champ - 6 ounces at a time now! Up from about just a few drops at a time when she started eating - it's amazing how far she has come.  We have so many reasons to continue hoping that her progress will keep up, and that she will continue developing well.

It's been a while since I've updated the blog. It's not because I've turned any corners about keeping everyone up to date or sharing Lily's story. I haven't updated the blog because I associate it with a really traumatic time. It's like surviving a bad car crash and never taking the same stretch of road again. Something like that. In a way, not coming on here and seeing the login page, seeing the "new post" button - not going through the process - has made the NICU stay seem a little more distant.

It's compartmentalization. Sealing off that part of life.  But I'm beginning to see that it hasn't been a good way of dealing with things.   It helped me convince myself that everything was going to be ok, that the whole NICU experience was just a bad memory. We learned some bad news yesterday that really caught us off guard.  There's a chance that not everything will be ok, which I guess we knew all along. It's her brain.

Lily's neurologist diagnosed her with something called benign external hydrocephalus (BEH), sometimes known as 'water on the brain', meaning there is too much craniospinal fluid between the grey matter of her brain and her skull. There are two types of hydrocephalus - internal and the less-severe external. He also saw some potential inflammation towards the front of her ventricles, indicating potential brain damage. The next step is an MRI to determine the extent of things.

More recently, she is also experiencing muscular tightness in her arms, hips, legs, and ankles. At the suggestion of her physical therapist and neonatologist, we're stepping up physical therapy from once every two weeks to twice a week. We stretch her once every two hours - keeping her muscles loose. Tightness is a sign of cerebral palsy, but it's also common in preemies who don't develop CP. So, we are watching out for CP too. We either won't know for a few more years, or we might find out after the MRI. I guess what I'm saying is that the MRI won't be able to definitively tell us if she doesn't have it, but it will be able to definitively tell us if she does have it.

My head is spinning writing this. It's pretty scary stuff. Sara and I are staying really positive and hopeful. We're staying strong, keeping our chins up and we are ready for whatever the future may hold.

Where was I.... there are two types of hydrocephalus. Internal and External, referring to the area of excess fluid on the brain. Lily's is the less severe, external. Benign external hydrocephalus. It could resolve - from what I'm reading, it usually does resolve. The outcome is still uncertain, though. There is a study by the National Institute of Health on the long-term effects of BEH, the sample size was a little small - 99 - but nonetheless:

"Developmental delay was present in 21% of patients (4% verbal, 20% gross motor, 4% fine motor delay)... Gross motor delay resolved in 15/20 and fine motor delay in 4/4 patients. Verbal delay resolved in 2/4 patients, but interestingly, was newly detected in 6 other children. None of the patients required cerebrospinal fluid shunting...

Conclusions: BEH patients in this series generally saw resolution of presenting motor developmental delays; however, new verbal delays were detected in a non-trivial number of patients. Quality of life measurements suggest some reduction in health status, but less so than is seen with shunted (internal) hydrocephalus."

Here's another one:

"Benign external hydrocephalus is a self-limiting absorption deficiency of infancy and early childhood with raised intracranial pressure (ICP) and enlarged subarachnoid spaces. The ventricles usually are not enlarged significantly, and resolution within 1 year is the rule."

I'm not sure what "resolution within 1 year is the rule" means, but it sounds good to me. Benign sounds good to me. Still, it's classified as a birth defect.  A benign birth defect. That's a hell of a balance of words.

We have a tremendous amount of hope, though. BEH can resolve itself.

I'm a risk guy. Not a risk taker. Just a risk guy. It's what I do for a living: analyze risk, quantify risk, decide whether a risk is good or bad. But I don't know what to do with this one. The risks are clear - but I can't process this one. I want to have hope, I want to stay positive and focus on the best possible outcome... but I also want to stay realistic, and understand what a worst-case scenario could be. 

It's Lily I feel bad for. She has had such a fight, at such a young age. Can it never end? At 7 months old, she has undergone more medical procedures and tests than most people have during the first 50 years of their life.

I just want her to run, to learn, to have a normal life. That's all I'm hoping for. That's what I'm praying for. And here are five things I'm thankful for:

1. How far Lily has come - six months ago, we didn't know if we were going to take her home.

2. Her smile, and her happiness - she is a very, very happy baby.

3. Her sight. She can see, and she can track objects visually

4. Her hearing. She can hear, and (sometimes) responds if you call her name

5. The fact that she has hit every milestone - she is not showing delays.

It could be bad, it could resolve. She might be disabled, she might not be. She might walk, she might not. Christ. The uncertainty is pretty tough to bear. But this is the new normal - this is the new life. Our plan of action is to give Lily the best life she can have - we are taking it one day at a time. That's all we can do.

Here's something I wrote before the neurologist appointment:

I choose to live life purely in, and for, the present day. I choose not to worry about possibilities. I choose not to dwell on statistics or worry about yet-unknown test results. I choose to accept that the future holds truly random events, and I choose to accept that "chaos" is not necessarily a bad thing- rather, it is a naturally occurring phenomenon beyond anyone's control. I choose to accept uncertainty, and I choose to be thankful.

I choose to be a pillar of strength for my girls. I choose hope, I choose to believe in the continuity of miracles that I witness every day.

I choose hope.

 Thank you all for the support, thoughts and prayers. This blog has had almost 50,000 views, it's pretty amazing. Knowing that everyone out there is still keeping Lily in their thoughts, prayers, and hopes is amazing. Lily has overcome tremendous odds - she is a fighter. She can beat this!

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!