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!

Day 73-79: Are we there yet?

Another couple of good days in a row! Lily is still working on moving to two bottles a day, but she's definitely getting better at her suck/swallow/breathe coordination. The thing is, she tires out and falls asleep about half-way through her feeds- it's the most work she's done in her entire life, literally! Both Sara and I have gotten to feed her, which was great! Feeding her is kind of a delicate balancing act... We have to watch for her cues that she needs a breather, or she desat's. Sometimes she will Brady, but she catches herself. Watching her heart rate drop from 160bpm to 90bpm is still very unnerving, though.

Sara and I can't wait to bring her home- we now know she will, indeed, come home! It is an indescribably good feeling. A month ago, we didn't know if we would ever bring her home... what a difference a month can make! We are getting the house ready- new stroller, baby clothes - finally! It looks like this story is going to have a happy ending after all :)

We just need to keep our fingers crossed - docs still won't start talk about going home, but the nurses say things like "get the CPR class out of the way", or "you'll be home before you know it" - such relieving things to hear!

Thanks you all again for the well wishes, prayers and good vibes sent Lily's way... as you can see- they workhe'she is, indeed, a miracle baby!

Days 68 - 72: It's been a great week!

It's been a few days since I've posted - things have been going really well! Lily's turnaround since three weeks ago can be described as nothing short of miraculous. It really feels like we're through the thickest part of the forest... so many great updates today! My regrets for not posting more frequently... you've all shared in the hard times, and I want everyone to share in the good times too - indeed, these are good times!! Here are a few pieces of great news:

- Lily is doing well on the nasal cannula! She was weaned down to room air (21% oxygen) for the first time ever, for a day  (the 4th), but has since been hovering around 25%. She tends to desat when she feeds, likely due to reflux. Apparently all babies have reflux - doctors may be giving her a mild form of prilosec tomorrow. Lily still has what's called BPD - Bronchopulmonary dysplasia (or CLD, chronic lung desease) - but it is getting much better. There is a small chance she could go home on oxygen. But we could live with that... the joy of having her home would far, far outweigh a few oxygen tanks around the house!

- Lily has started bottle feeding, and is doing a great job at it! It has been amazing watching her learn how to eat. Whereas full term babies are born instinctually knowing how to breast or bottle feed, preemies have to learn. The trick is something we all take for granted... knowing when to alternate between swallowing and breathing. Good news is, Lily's really doing fantastically at it :) Doctors moved her gastro tube from her mouth to her left nostril, so Lily is able to suck on a bottle. She has bottle fed for three days now, once each  day. She drank a whole bottle today (45mL) in ten minutes! Tomorrow she will start 2x/day bottles, with the goal of getting to 8 bottle feeds a day (once every 3 hours), at which point they remove the gastro tube - AND WE TAKE HER HOME!!!! Her attending physician wants to take it very slowly, though - adding a bottle every four days or so. (The risk of starting too many bottles too quickly is that she burns calories and loses weight from the work - she's not used to it.)

- Lily was moved to the LEAST critical area of the NICU today! It's great - fewer alarms, they play soft nursery music for the babies, and thankfully there is a MUCH, MUCH MORE COMFORTABLE CHAIR!! My one complaint about the NICU is that the chairs there are mostly 90-degree-angle rolling chairs, very uncomfortable when you're spending hours there, often holding a baby and not moving, every day! In any case, add that to the growing list of things I am thankful for - a more comfortable chair.

- Doctors and nurses, while they still won't say "you'll be home by XX date" - are starting to say things like "do you have a car seat for her?" - which is great to hear! They are talking more about post-NICU life, and it is so, so refreshing to hear. We are learnings how delicate Lily will be when she comes home - she will not be like a newborn baby. She is also coming home right at the beginning of flu season.

That brings me to something else Sara and I have been talking (and worrying a bit) about.  At one point, we were thinking that we could have some sort of coming home celebration, or even a christening celebration in fall. Doctors have told us that neither can happen given the fragile state of Lily's immune system. We have to be terribly, terribly careful with her. Doctors have warned us that even a cold can put her back in the hospital, given her lung conditions. I hate to say it but we are basically going to be hermits for the first few months of her life :( That being said, if Lily is doing well, we will be having a massive, tremendous party once spring comes around, and hope you will all join us!

Before I close out this post, I want to once again thank everyone for your support, well-wishes and prayers over the course of the summer. It has been one heck of a ride, and you've all been with us on it - Lily in the conductor's car of the train, just learning how to drive. And by the grace of God, she is learning - and the ride is getting less bumpy every day. Now it feels less like screaming at 90mph across the side of a mountain, and more like a subway ride... just waiting to get to the station. This nicu experience has been many lessons - it started as a lesson in hope, then turned into a lesson in courage...  it was a lesson in faith, and then again another lesson in hope - it has since been a lesson amazement, thankfulness, and patience.

OK, so... now on to some pictures!

Love my girls :) Can't wait to have them all in one room!

My sisters, Annette and Yvonne

Sleeping Beauty

My principessa

Thanking the Big Man, perhaps?

Days 64-67: Almost there!

Lily has had a great couple of days! 

She's no longer in an incubator! Docs moved her to a bassinet on Thursday because Lily's been doing well holding her own temperature. So, out with the old, in with the new!

She is still doing well on the nasal cannula, hovering around 25% oxygen and liter of pressure. She has had only one apnea/brady since august 23rd, showing real improvement in her lungs!

Docs will probably try bottle feeds with lily this week. Bottle feeding is the last remaining hurdle before going home- we could be there in as soon as three weeks! The three big "pillar" requirements are unassisted breathing (cannula), holding temperature, and bottle feeds- two of three are done! Lily is now measuring 4pounds 7ounces, gaining between 10 and 50 grams every night. Just what we want to see!

The "almost there" feeling is getting quite palpable- it's been a long 10 weeks, but the light at the end of the tunnel is getting bigger and bigger! The doctors and nurses her call lily the "rock star", since she her recovery has been so amazing these past few weeks. She fought back from the brink, and she's going to fight her way right back home, into our arms!

Day 63: Nothing but great news today!

No more CPAP! Lily was moved to the nasal cannula today, and she is doing wonderfully :) At two months, we're finally able to look at her - our beautiful, beautfiul girl. She is awake, alert, looking around the room - responding to our voices - we are overcome by happiness today, it is a huge step and a great sign that Lily's lungs are developing well. She is, without question, the strongest kid I know!

Her blood oxygen is in the mid 90s on about 30% oxygen - the cannula pressures are about 1/2 that of the CPAP, so she really is doing the breathing on her own now. The pressure is just there to push the oxygen alongisde the room air.  Otherwise, in other good news - she had an eye test today, during which no abnormalities were seen. Her eyes are still premature, but nothing that isn't normal for babies at 33 weeks gestational age.

She is truly a miracle! Thank you all for the prayers, good wishes, positive energy sent Lily and our family's way. It has been of tremendous help these past eight weeks, has really helped us stay positive and hopeful. It really, truly feels like the light at the end of this long tunnel is fast approaching - we still have about a month, hopefully not more, left in this journey, and we remain very, very hopeful that this story will have the happy ending that is slowly (but surely) taking shape!

Also - a tremendous thank you to all who have donated, and continue to donate, in Lily's honor. In conjunction with Hillary's amazing help, we have now raised over $5,000 for Hailey's Hope Foundation and $2,500 for a similar foundation in Fairfield County called Tiny Miracles... truly amazing, we are so touched - it is for such a great cause - thank you all so, so much!

Day 61 & 62: Graduated!

Another great couple of days behind us! Lily graduated from the most critical room in the NICU yesterday, and is now in a less critical area - she's doing really well! Hopefully nasal cannula within the next few days. She is digesting well, staying around 23-25% oxygen... the only thing keeping her from the cannula is that she is starting to desat when she's getting fed. Could be reflux, in which case they may start her on a type of prevacid later this week. Also - Lily crossed the four pound mark! She's now four pounds two ounces - really packing on the weight. Can't wait to bring her home!

Finally, after 60 days - we're at a point where the updates can start coming every other day. At this point, no news is good news! Not much to write about these days, just eating, sleeping and growing... what babies are supposed to do. And I hope to keep it that way!

Days 59 & 60: Back to boring!

A couple of good days in a row! Lily is still doing well on the CPAP at about 26/27% oxygen, and doctors were able to turn down the CPAP pressure to '4' today - so the past few days have been pretty boring - and as always, boring is good!

My mom was able to hold Lily today... a first, which was great! Lily did really well during the hour, blood oxygen in the high 90s for the most part. She really liked being held by her grandma :) I'll post up some pictures as soon as Sara gets back from her visit - camera's in the car...

Day 58: Back on CPAP!

Another great day for Lily! She was weaned from SiPAP to CPAP today, so she's doing even more breathing on her own. SiPAP has extra little jets of air, to remind preemies to breathe. Since lily hasn't had any alneas or Bradycardia's, they moved her to CPAP... Just positive air pressure. It's the exact same thing that people with sleep apnea wear- only preemie sized.

Otherwise lily is tolerating her feeds, and Gaines another ten grams last night. Both Sara and I held her for an hour today, and all is well in the world! Really a great feeling to be back in 'boring days'. But very cognizant that we are still in the nicu... just hoping for no more land mines!

Day 57: No more breathing tube!

Lily is no longer mechanically ventilated!

Such a great day! Lily was extubated today and is doing well on the air mask (SiPAP). She's on around 22% oxygen, just 1% above room air! Her pressures are 6/4, as opposed to 33/17 during the scare. It's amazing how resilient and powerful such a small body can be - the swings are fast, and we're very hopeful that this was the last big one - she's back to eat, sleep, and grow mode. And that's just where we want to stay!

So far she hasn't had any apneas or bradycardia's (touching wood). She has never done this before, but we're remaining cautious. Her lungs are sounding good, and though there is still a little fluid in them, it should dissipate over the next few days. She'll be on diuretics until the next step of support (nasal cannula).

We're all too aware that preemies can tire out when breathing on their own - but right now, we're focusing on the positive side of things - she no longer has a tube in her throat, hopefully won't ever have one again in her entire life!

Otherwise, she is up to 35mL bolus feeds and is tolerating them well. So far, so good! I held her tonight for about an hour, here are a few pictures

We're so incredibly thankful for our little miracle - so thankful for seemingly have made it through a very scary time. It still kind of feels like we're walking through a mine field, but it seems less densely mined and it we feel like we're on the right path to avoid another scare.

Thank you all for the support, positive energy, and prayers - I held a miracle this evening!

Day 56: Birthday blessings

Another good day for lily! They weaned her a bit on her pressures, which are now set at 15. Once she gets to the 11/12 range, she might be able to go back to CPAP :) SiPAP actually, but minor difference there is small pressure bursts on SiPAP to help remind lily to breathe. She is also now on full 30ml bolus feeds! She's digesting them well, and everything is moving through properly, if you get the gist!

Having a great birthday :) The sun is shining, Addie is laughing, Sara is smiling, and Lily is on the mend, hopefully close to extubation. Dinner tonight with sara at a craft beer place called Birdsall house - looking forward! 

Love my girls- it's been a good 28th!

Day 55: progress!

Today was another good day, and more progress was made! Lily was switched to the conventional ventilator today around noon, and she is doing well on around 30% oxygen. She is even "breathing over it" a bit - meaning her breaths exceed the ventilator breaths - the oscillating ventilator wouldn't allow her to do that. So this weeks goal is now to get her off the ventilator, back on SiPAP and breathing on her own - with just a bit of air pressure for help, instead of full-blown ventilation. It's nice to hear docs talking about extubation! I'm hoping for sometime this week. It will be GREAT to get that tube out... she'll be a lot more comfortable, and her lungs can start to heal more without mechanical ventilation.

On the gastro front, Lily is now on 25ml bolus feeds, just 5ml short of a "full feed" for her size. Getting to full feeds today is particularly good, because it means they can stop the electrolytes tonight... which in turn means they can take the IV port out of her head and she won't need to be stuck for another IV tomorrow! They are starting lily on a new diuretic tonight, one administered through her feeding tube. I need to catch up with the docs on why we're stopping lasix, but it may have something to do with the potential risks, one of which is hearing loss.

I got to hold lily tonight! The first time she could be held in 10 days, and it was great. Lots of tubes, but I didn't notice them... just our little warrior. Still the strongest kid I know! The amount of work her little body has to do is astonishing. It seems more than any adult body could survive. She really has the strength of thousands. And even though it sometimes feels like we're walking through a mine field, Lily's strength keeps us going!

Day 54: boring (finally!)

Good day for Lily! She's been on 25% oxygen throughout the day, just 4% above room air. Her ET tube needs to be suctioned out less frequently now, once every handful of hours instead of twice an hour, indicating. She lost about 50 grams last night, so the double dose of diuretic worked well. Tonight she gained it back, but nurses are saying that since she's back on breastmilk we should expect weight gain- but just not 90 grams at a time.

Doctors were able to increase her feed rate today, from 10 to 15 ml bolus feeds, which is good- half way to the 30ml feeds that she stopped last week!

Lily had to get another IV in her forehead today :( her veins keep collapsing, and her IVs have only lasted a day or so at best. The sooner she can get back to 30ml feeds the better... Once she is, they can take her off the electrolyte and fat emulsion (Gatorade) and she won't need to get stuck with so many IVs.

Although her lungs are looking much, much better (no collapse, only small spots of atelectasis), they're now saying lily has chronic lung disease (CLD) since she is still requiring ventilation and oxygen at 32weeks (her adjusted gestational age). They seem a little quick to slap a label on things, and I remind myself of the night I was told she had  PVL.. which turned out to be nothing. Fact is, they probably wouldn't be calling it CLD if Lily hadn't gotten sick, and if she was still on CPAP. And CLD clears itself up over time, it's just a matter of how long. Hopefully they move her to the conventional vent tomorrow, and then hopefully CPAP before too long.

So, here's to boring days... I hope we can keep it boring until she comes home!

Day 53: Lungs getting better!

Lily is having another good day, and she continues to improve! She is now on 25% oxygen, just 4% above room air :) Her left lung is no longer collapsed, and if her upper right lung reinflates soon they will take her off the oscillator and put her on the conventional ventilator- and hopefully back to SiPAP/CPAP soon after that. It's amazing how strong her little body is - 3.5 pounds of brute strength!!

She is having a little trouble digesting, so they've had to stop and re-start feeds a few times since yesterday. Most recently, she digested 5ml well and they increased her to a 10ml feed, which they'll check on around 4pm. Fortunately her stomach still feels soft, and it's measuring a girth of 24cm- not distended. Doctors are keeping their eyes peeled for something called NEC, but so far aren't seeing signs of it, which is great.

They're giving her and extra dose of diuretics today, since she gained 90grams last night. Weight gains that large indicate water retention, so hopefully she'll lose a bit more tonight. We want to see a nice steady gain- 40/50grams a night, not too much more.

It's kind of hard to believe we're almost two months in. Hopefully past the midway point! People on occasion have said "I don't know how you guys do this." The fact is, we do it because there is no other choice. Strength is the only option- our kids need us! Is it tiring? Yes. Mentally exhausting? Sure. But we find a way to persevere - some how, some way, the mind finds a way. There are side effects, sure - Sara and I are each a bit more on edge these days. Every time the phone rings, we both rush to it, hoping it's not the hospital. Little things like that. We're both getting sleep, probably 5 or 6 hours a night on average. Addie keeps us very happy, though, and we've had a ton of help from family. When both Sara and I want to visit lily together, we can drop Addie off over at Sara's mothers house... or During this past week's scare, my mom came down and stayed over so we could both visit the hospital for morning and evening rounds. We are very fortunate to have a lot of family close by! So, here's a HUGE thank you to everyone who has helped us out, both in the big and small ways! And an especially big thank you to everyone who's praying for lily and sending her good wishes. They've worked before, and they're working again!

Day 52: Still fighting!

Still doing pretty well! Lily has been between 25 and 30% oxygen, she really seems to be fighting off whatever is plaguing her. She's also fighting the ET tube, however, and keeps trying to pull it out so she desat's a little more frequently. She's moving around alot, which is great, and they're putting her back on breastmilk this afternoon since her stomach is a little less distended! The feeds will probably be about a quarter of what she was on last week, but they'll be able to build her back up quickly if she tolerates it well.

Doctors still say they're 'treating the unknown', but whatever they're doing is working... so they are staying the course with a 7-day regime of antibiotics (vancomycin and gentomycin), administered intravenously every 6 hours.

Lily lost about 90 grams last night, which is great. Her lungs still have a fair amount of fluid, but she isn't requiring suctioning as often - she had desat episodes here and there, but we've learned this week not to be too greedy - desats will happen, as long as she pulls out of them - that's what matters!  She is definitely still fighting the good fight, is very alert, and can't wait to get this ET tube out!

Day 51: A miraculous day

Miraculous. Purely miraculous. Lily is showing meaningful improvement! Doctors caution us that she is still very sick, symptomatic of pneumonia, lots of fluid in her lungs, with one collapsed and one partially collapsed lung - but that she is, without question, improving. She has gained another 200 grams in the past two days, so they are giving her another diuretic tonight - but the lungs are what docs are focused on now. Water weight won't kill her - not being able to breathe, however, is a different story altogether.

Quite wondrously, Lily has been weaned throughout the day from her oxygen, all the way down to 45% when we left! She's still on the oscillating ventilator - but when we got there at 9am, she was on 80% oxygen. By the time we left, they had successfully weaned her down to 45%, without causing her distress or desat episodes. (We just called the NICU and she is holding steady at 40%. Really just amazing news.)

We are very, very cautious about getting too optimistic - we're pulling ourselves back, and refuse to go down that "everything's going to be OK" path again - but the fact her condition is not deteriorating is really tremendous - miraculous! She is such a FIGHTER. She is a WARRIOR - strongest person I have ever seen in my life. She is fighting the battle of her life with her thumb-sized lungs - and today, she is winning the fight one breath at a time.

Sara and I feel guilty about taking so many people on this roller coaster with us. The highs and lows are pretty unbearable, and we were wondering if we should just hold off on updates during the particularly scary times. That said, we don't want to keep people wondering; it's not fair to those of you who have been following Lily's battle. The blog is getting about a thousand views a day now - so much though we hate this roller coaster, and hate that we're taking everyone on this crazy (hellish) ride - it's a roller coaster we are still glad to be riding. As long as it doesn't go off the tracks, we're strapped in and holding on. Our only regret is that now, you are too. In a way, it's like we're all riding a passenger train along a steep mountainside. We're all on the train. (Well... maybe you're all buckled in the cars and Sara and I are walking along the tops of them. But Lily's driving... she's never driven a train before, though. She's learning.

Thank you everyone for the outpouring of support, well wishes, and prayers. I firmly believe they are working miracles. You know when you catch your spouse saying something that you had just been thinking? Or when a loved on calls you just moments after you had though of them? I'm not sure what that is, but it exists - I think we've all experienced it once or twice. I very much believe that Lily is strengthened by all of the people praying for her - it is a good feeling to know that hundreds of people around the world are rooting for our little baby.

Thank you - from the bottom of our hearts - thank you so much for helping push Lily along in her battle. She continues to hold the line - and she made meaningful progress today. Tomorrow is another day, that's something we are always aware of - but focusing on Lily's strength, and focusing on hope pulls Sara and me going... hope keeps us strong. So do you!

Day 49 & 50: This is now her fight.

We baptized Lily this morning.

The last two days have been really hard for her. Sara and I are again very scared for our little girl. We have had a major setback, back to day one, the doctor said. She has pneumonia and yesterday her lungs filled with fluid and collapsed, she gained 110 grams. She was switched back to the oscillator vent that she was on during the first few days of life. She has required 100% oxygen since last night.  An inflammation indicator called the c-reactive protein jumped from a 1.7 to an 11, indicating possible infection... The idea being that most infections show inflammation, but not all inflammation is caused by infection... could be stress related.

We went to rounds this morning and the doctor told us the cold, hard truth. Lily's distress level, need for life support, and chances of survival are "back to day 1". Back to 50/50, back to hour-to-hour.

Here are a few things the doctor told us, word for word:

- "Her chances are 50/50, but I'm hopeful"
- "I'm betting it's not an infection, but it is definitely something."
- "There is a chance that she might die."
- "Right now she is the baby that my team is most worried about."*
- "She is scaring us, too."
- "You need to stay positive."
- "There is nothing more that we can do for her, other than provide support."
- "This is now her fight."
- "See how she's moving, that's good. The most extremely sick babies don't move."

*There are 3 teams for 50-60 babies at the nicu. 2 of the teams, red and green, cover the 12-16 most critically ill babies. We're with the green team.

It is very frightening, terrifying and heart breaking to think that Lily is again faced with such difficult odds. It feels very cruel to have put 50 days behind us, to see her fight so hard for 7 weeks, only to have such a major setback and to again face such uncertainty.

We are praying a lot, and know that hundreds and hundreds of people are praying for her too. She will pull through, I know it - she has to. In two or three months we'll all be at home, laughing and watching Addie play with Lily. I know it. It has to be true.

Here are a few positives:
1. Lily is still tolerating her feeds, and is still digesting well. Nevermind. Just called nicu and she vomited, so they're stopping her feeds for a while. It makes sense though - I don't feel like eating when I'm sick, either. Doc said not to get too worried if this happens.
2. Lily's blood gas tests, which are taken once every four hours now, are getting a little better. Not as much as docs would like to see, but at least they're not getting worse.
3. Although she's on 100% oxygen, around 12pm they were able to lower her pressures* one (of about 30) notches.
4. She is waking and moving around a bit. Yesterday she was very lethargic and didn't wake up at all.
5. Lily is still alive, and still fighting.

Even though today's news is a big step back (about 50 of them), that doesn't mean there won't be better days ahead of us. Fortunately her body is bigger. Who knows, maybe next week will be 20 steps forward. Right now, we could take just one step - any steps - anything but another step back.

*Two types of measurements on ventilators. Oxygen saturation (which is at 100%, can't go any higher) and pressures, which is the thrust with which air is pushed into lungs. Higher pressures means more inflation is required. When she was on the CPAP, pressure was at about 5.0 -- pressures are now about 30. 

Thank you all for the prayers and support. Please keep the positive energy and prayers coming for Lily - I hate that I have to keep saying this... but she needs them, again, more than ever. We are staying positive - and full to the brim with HOPE.

Day 48: Wow, forty eight days already?

Another pretty good day for Lily! She is still doing fairly well on the ventilator, which has been set at between 35-40% for most of the day. She is still tolerating her feeds well and she lost another 10 grams, which is good! The diuretic is working, and her lungs are sounding a little better.

For the time being, doctors have decided not to treat the inflammation/potential infection of the trachea- tomorrow's culture results may change their views on that, though. Right now their main focus is on clearing up the fluid in her lungs, so they are continuing the diuretic for another day or so. Once the fluid is cleared up, they plan on extubating her and trying the SiPAP again. Could be one, two, maybe three more days. The only thing that would change that is if her 2nd tracheal culture (results tomorrow) comes back as "strong" positive, as opposed to only "weak" positive, which was the result of last Friday's test. We'll cross that bridge if we get to it...

Otherwise, Lily is really starting to look more like a baby, and less like a preemie. Her proportions are more "normal", and she really looks quite comfortable. She is waking up a bit more and is back to her feisty self... She tugs at her tracheal tube, trying to pull it out. Poor kid. But there's a silver lining- it means she's more alert and more aware of her surroundings than she was over the weekend- which is great! (not to worry, she can't pull her vent tube out, it's secured in place with medical tape.)

I have a thing about posting pictures of Lily on the ventilator, which is why I haven't. If I was on a ventilator, I wouldn't want someone posting pics to Facebook.  Would you?  Maybe one of these days, when she's breathing completely on her own, I'll post a before and after. For now, I can only promise you that she looks  comfortable- she is looking better, has good color -she's looking more like a baby, and less like a preemie. Good stuff! I'll get pictures up as soon as she's back on the air mask.

Over 25,000 views now, wow! Thank you all for following Lily's story! Thank you for the prayers and positive energy sent her way- she is a real fighter, and despite the lungs and setback on the ventilator, she is still really doing relatively well. No surgeries, no brain damage... Both are tremendously good things! We really do have a lot to be thankful for... and we look forward to taking our little girl home more and more every day!

Day 47: Doing better

Lily had a good day! She was on 35% oxygen for most of the day, didn't brady or desat much, and she lost 90 grams! This time we were hoping for weight loss, strangely enough, so it's a good thing - she lost a lot of her built-up water weight, and looks much less puffy now. She is still tolerating her feeds well, too.

Lily's first tracheal secretion culture came back positive; they measure the potential infection by the amount of bacterial growth in a petri dish. Apparently Lily's culture didn't show a great deal of bacteria- there was some, though, so they're running another test, which takes 48 hours. If the second test comes back positive also, they will probabluy administer a medicing that's like a nebulizer. It will require 5 more days at least of ventilation, so we're hoping the second culture comes back negative. I should note that this type of infection is less severe than a blood infection, since it's localized.

So, all said, a pretty boring day! Given the last few days, a boring one is not only good - it's great!

Day 46: Battle fatigue

A better day on the oxygen, with the ventilator to set anywhere from 45%-70% oxygen. Not as many severe desat episodes or brady's as yesterday. But the new issue - it seems there is always another new problem - is the buildup of fluid in Lily's lungs, which is related to general water retention in her body - she's starting to look a little puffy. Her lungs sound very 'crackly' by stethoscope. Since she's retaining fluids she's gaining weight at a much faster rate than doctors want to see. She's put on almost 200 grams in the past four days. Six and a half ounces... way too much for four days. Doctors are going to administer a second round of lasix, the diuretic, in hopes of clearing up her lungs. The lasix hasn't done much in the past, so Sara and I are biting our nails on this one.

Another concern is that is that Lily is already on the highest possible sodium supplement since her sodium levels are so low. The diuretic washes out any existing sodium. So the diuretic is basically treating the greater of two evils, the water retention in her lungs and body - but it makes another matter, the low sodium levels, worse.  Always something new to worry about. Sara and I can't wait to look back on all of this as a memory one day.

In good news, we learned that the atelectasis has cleared up! Her lung is no longer collapsed--- great news. We're hoping that means the ventilator has served its purpose, and docs can extubate her soon and put her back on SiPAP. The extra tracheal sectretions and fluid buildup could be linked to the intubation - since it's more invasive, perhaps.


Other good news - Lily's blood culture came back negative! So they're saying she simply got tired - got battle fatigue - then she got the atelectasis and ultimately failed the CPAP, and that there is no infection in her blood. There could be a separate infection in her trachea, though, so they sent tracheal secretions for a culture, the results of which we should receive in a few days.

Staying positive and praying a lot for a fast resolution to these lung issues... thank you all for the good energy and prayers sent Lily's way!

Day 45: More lung problems... enough already.

I wish every post could start with "lily had a good day." Unfortunately this one cannot. Lily is having a tough day. She's having a hard time on the tracheal ventilator, but she still needs to stay on it. Her lungs and trachea are secreting more fluids due to the invasive ventilator... the fluids are gathering in both lungs, and are likely causing the more frequent and severe episodes of desat's and Bradycardia's. They're doing a culture of the secretions to see if she has an infection in her trachea... which is less severe than a blood infection. Could be a cause of all the drops... she's had three or four drops since I've been here, about an hour. Lily's hematocrit levels were too low again, so she had her eighth blood transfusion today.

What's worse, Lily's right lung is now collapsed. They saw it in a chest xray today. Medical term is atelectasis of the right lung. They think her lung started collapsing on the CPAP. Apparently it's common among preemies, the attending called it "par for the course". He also called it a "minor setback", which makes it sound less severe than the gut reaction when you hear 'collapsed lung'. Still... minor setback? My kid's lung is collapsed, and you're saying it's a minor setback? Or... par for the course? If this is par, I don't want to know what a bogey is. 

The fact is, it could be worse. I'm glad that they've at least identified the issue, and that they are taking steps to fix it. Doctors are hoping the added pressure of the ventilator helps re-inflate her lung. We're hoping it does, too. Docs administered another round of the diuretic today, in hopes of clearing up the fluid in her lungs.

All of these setbacks are pretty unnerving. They're enough to drive you crazy. One second, everything's OK, she's doing well on the CPAP... next second, BAM... like someone jumps out of the closet and hits you on the head with a bat. What we need is a setFORWARD. Enough setbacks.

Good time to list a few positives.
1. Lily's still gaining well. She gained another 50 grams last night. She's now 3lbs 6oz. They moved her feeds to once every three hours, as she gradually moves more and more to a regular eating schedule.
2. No NEC! The doctors said she gave them quite a scare with the bloated stomach yesterday. Thank God
3.  No brain injury! That bears repeating. No brain injury!
4. They've identified the lung issues, and are addressing them. Although the ventilator and collapse are setbacks, if could be worse.
5. And afer all... Lily is still fighting!

The blog has received almost 25,000 views since first post. Thank you for following Lily's story, and thank you all so, so much for keeping her in your thoughts and prayers.

Day 44: Two steps back

Updated a few times today
We received a call from the NICU last night at 3am, they had to take Lily off CPAP and re-intubate her on a tracheal ventilator, because she was having too many apneas and couldn't pull out on her own. Shows how fast things change - she was fine at 10pm. On my way out of the NICU, they gave me a talk - telling me not to be surprised if I came back for tonight's visit and Lily was in the 'next' room for more stable preemies, apparently it's a lot more private and quiet: there are fewer babies, and they aren't all on beeping machines. I didn't even want to write about that, didn't want to jinx it. Hah.

Sara just said something that really hit the nail on the head..."It's like you're on the interstate, driving north, and north is where you want to go. Then someone grabs the wheel, turns it really hard, and all of the sudden you're driving south, back to the cliff."

Yep. That pretty much sums it up. We are staying positive, hoping Lily gets back on SiPAP or CPAP soon, hopefully in a day or so. Hoping and praying she doesn't get any worse.

So, what's happening? Here's the medical part. Between 10pm and midnight, Lily had 7 severe apneas ranging from dips to the 60s all the way to the 10s. Between 12am and 2am, Lilyhad four more severe apnea's (aka desat's). Her blood oxygen dropped down to 18% at one point, the second lowest we've ever heard of it going. She couldn't recover on her own, so they had to intubate her. By why? It could be one of three things:

1) Lily could simply be tiring of the CPAP, tiring of breathing on her own - that's much less worrisome, and is what Lily's nurse thinks is happening because she looks so peaceful, and isn't fighting the vent or trying to pull the tube out.

2) Her stomach was measuring slightly distended, by about 4 centimeters, last night. Docs think it was just gas in her abdomen, caused by the CPAP (continuous air pressure). Gas could have pushed on her lungs a bit, and caused the apneas.

3) The most worrisome cause would be an infection... to test for infection, doctors are doing two rounds of tests, the first of which is complete and came back negative (no spiking white blood cell count, CRP indicator not elevated). The second test, a blood culture, takes 48 hours... so we will have results tomorrow or the day after tomorrow. They put Lily on a low dose of two antibiotics (one main and one 'supportive'), to combat any potential infection. The risks of administering an IV with antibiotics is lower than that of allowing a potential infection to spread).

So, hopefully it's not an infection - looks like it's just tiring, which we are hoping is the case. But we've learned not to get too far ahead of ourselves. The past month of CPAP really got us thinking everything was heading in the right direction - and we hope it still is. After all, it's not like we hit a reset button on the last month. Lily is still almost twice the weight, she's on full feeds, she doesn't have NEC, she's not on the jet or oscillator but rather on the standard ventilator - we just have a lot to be positive about, a lot to be hopeful about, and that's what keeps us going!

Day 43: Still doing well!

Another good one! Lily has been around 30% oxygen on her ventilator for most of the day, and her lungs are showing improvement relative to yesterday with less severe desat's... more like quick dips in blood oxygen saturation than a real "desat"... Which is below 83% blood oxygen saturation for a period of more than five seconds. We can now notice when her blood oxygen dips before it shows on the monitors... her skin briefly gets dark, similar to its hue when she was first born.

A lot of people have asked how Sara and Addie are doing. They're doing well! Addie seems pretty unphased... might think that this is how all babies start out. She's adapted to my nightly visits to the hospital. I miss putting her to bed, but that's the trick- balancing time with the kids! Sara is doing well, she really is such a strong woman. We have a lot to be positive about, and are focusing on those things. Are there ups and downs? Of course. When we get down, though, we remind ourselves of something that happened recently. It reminds us how incredibly fortunate we are. Even though the path is long... it is a path, and the road goes on.

It was the day we found out that Lily's second brain scan came back clear - I was on cloud 9. I remember telling Sara I felt so elated I could run around and hug strangers. That evening, I was in the NICU - must have been around 9pm. There's no easy way to write about this this... but I noticed that another family was in the room - dozens of people, behind a curtain. Usually, only two people are allowed bedsite at a time. Their entire family was there with their priest, praying, singing hymns and holding their baby girl while she went to God. It was absolutely heart breaking. I had to leave. Couldn't do it. Before leaving, I asked the nurse to offer them some of the Holy Water from Lourdes to bless their baby, which they did later that evening. On the way out I crossed paths with the grandfather - told him I'd be praying for his family's strength and courage. I ended up hugging a stranger that day, but not for the reason that had crossed my mind that afternoon. 

When I went to visit Lily the following day, the baby's incubator was empty. Sterility had returned to the previously darkened corner of the room. Every time I'm in the NICU, that corner is a poignant reminder of how fortunate we are. It is a poignant reminder not to take a moment for granted... not to take any healthy baby for granted. I hate to post such a sad story - but it's reality. Some babies can't be saved. Every single one that is - is a pure miracle!

We're so, so grateful to have Lily, so grateful that she is still fighting. We're also praying for that family, for their strength, and for their courage.

Day 42: Great!

Lily crossed the three pound mark today at exactly six weeks old! She gained 70 grams, her biggest gain yet - so she weighs three pounds one ounce! She had a good day today, and has been between 30 and 35% oxygen - she's on full feeds now, is still digesting well, and is growing rapidly. She looked a little pale in the morning, so doctors took a blood test. It showed her hematocrit levels are a bit low at 28%, when they like to see 30% or above. They're not going to do another blood transfusion, though, because her reticulocyte levels are at 8%, which is a good level. Her temperature is swinging around a bit - at 100.2 last night and this morning, but it fell to 98.5 this evening. They're saying the swings are environmental, since they turned off her incubator heater yesterday.

I held Lily for about an hour an a half this evening. It was great - really just the best thing in the world. Sara and I can't wait to bring her home... seems such a far way off. But at the same time - the past 42 days have flown by, so I'm hoping the next 42 do too.

So, another pretty boring day for Lily. We like boring! Thank you again, everyone, for all of the prayers and positive energy. They're really working miracles :)

Day 41: Hope matters!

Lily wearing a shirt that Addie picked out

Another good day! Lily has been between 30-35% oxygen today, and is still tolerating her feeds well. They took her off the isolette heat monitor and clothed her- the idea being to see if she can hold body heat without environmental aid. She looks pretty comfy! Hopefully she has an easier time stabilizing this time around. 

So, we're now 41 days into this. It seems like a new normal, though Sara and I do remind ourselves that this is anything but normal. Normal will come back, though, and we can't wait for it!

With the benefit of six weeks behind us, perhaps it makes sense to reflect a bit on a few lessons learned so far:

- Hope matters!
- The human body and mind are incredibly powerful. Their potential is limitless.
- When faced with adversity, weakness is not an option. 
- Don't fret over spilled milk... unless it's your wife's breast milk, you just dropped the container on the kitchen floor, and the cat's lapping it up.

- If Lily can do this, anyone can do anything.
- If you're standing on the edge of an abyss: tie in, and build a bridge.-
 And just when you think you can't... remember that you can, and you will!

So, all said - another good day. Pretty boring... and just as yesterday, boring is good! Hopefully they can wean her down a bit tomorrow. 

Fundraising update: So far, $5,310 has been raised in Lily's honor for NICU parents!! Amazing!! Thank you everyone, your donations directly help TriState NICU parents going through a traumatic time - a few tanks of gas, a stay at the Ronald McDonald house, books about preemie parenting... these are things you just can't put a price tag on. I can't wait to tell Lily all about this one day, and I can't wait for you all to meet her!

Also - an old friend of mine from college, Hillary, is running a half marathon in Lily's honor! She has a fundraising page set up for Hailey's Hope 

(http://www.haileyshopefoundation.org/hillary_run.htm). 

If you have not already donated, please consider helping Hillary reach her goal of $500 for Tristate NICU families - all donations are fully tax deductible! Thank you Hillary, we are truly honored!