Yesterday is history

 Here I sit, one year to the day after it all began. I am blessed, so so fortunate to be able to write this:  this is behind us. The darkest days of  life are history. They are a memory. And they taught so, so much about what's really important in life.

Lily has won. Last year she won her battle and this year, she's winning the war:

She is clapping,
She is waving,
She is laughing,
She smiles all the time,
She is sitting up,
She is playing,
She is crawling,
She is exploring,
She adores her older sister,
She eats like a champ,
She feeds herself,
She sleeps well, and soundly
and she is starting to babble!

In short, she is doing miraculously well. My awe at her development never dissipates. Every day, I hold a miracle in my arms. And for that I feel so, so fortunate. More than ever, I'm confident that lily will be able to lead a normal life. She will walk, she will run, she will learn and she will communicate. And one day, she will be independent. As a father, that is all I can ask for - her chance to lead an independent and fulfilling life.

The past year has had harrowing moments. Moments of despair, uncertainty and unending worry. There have also been moments of joy and throughout, hope has prevailed.

And remember - hope matters.

 One year ago, I did not know if lily would live to make it home. Six months ago, I did not know if lily would ever be able to crawl. One month ago, I did not know if she would start babbling or not. I hoped, but I didn't know. Lily is living proof that when hope is the only hook to hang your hat on - that's where you hang your hat! I guess you never really know how strong you are until being strong is the only choice you have.
Hope matters.
Miracles exist.
And never, never, never give up.

Today, we put history behind us and look into the future having been through the storm and emerged. The ship is stronger for it. Thank you everyone for your support this past year. We wouldn't have been able to do it without you.

Happy First Birthday Lily!

 

Continuum of miracles

Amazing news! Lily had her MRI last week, and her neurologist appointment this morning. The news we got was great! Her ventricles look good, there were no brain bleeds that went previously undetected, and her external hydrocephalus (BEH) doesn't appear to be progressing. Really such a HUGE relief - just a giant weight off of the shoulders, especially after the scare we went through with the brain ultrasound last year... we were so worried about brain issues. But apart from the BEH, which usually self resolves, there are none!

We learned some new things about BEH today at the neurologist. Damn they're smart. I previously thought BEH occurred when the brain produced too much cerebrospinal fluid, which in turn exterted external pressure on the brain. But that's not how it works - docs tend to think it's more that the cranium grows a little faster than the brain itself, so the extra cerebrospinal fluid is made to fill the space. Interesting. Thought that was good - no brain pressure. I like no brain pressure.

So, she was basically discharged by her neurologist - she doesn't have to go back for another year! We have seen tremendous progress the past month- especially with Lily's tightness, which has really improved. She is doing PT four times a week now... two at-home visits by her physical therapist, and two water therapy sessions at the Children's Rehabilitation Center down in White Plains. Occupational Therapy (OT) will probably start in a few months - OT focuses on senses and sensory development, since preemies often have sensory issues. She hasn't shown any yet, but we are focusing on early intervention wherever possible. All the science shows it works, and I can't argue with science! No downside to it. We're very lucky to have Julie, Sara's sister, as Lily's caretaker. She works with her daily, pushing her along, doing her stretches, taking her to Valhalla, working with her therapists. Really gotta recognize her efforts here - she has made a huge difference, and is a great aunt to lil hope!

In the past month, Lily has: started to reach for things, give big slobbery kisses on the cheek, laugh a lot, really observe the world around her, eat stage 2 foods, and according to Addie, sound like an elephant when she makes raspberries! Today she used her pincer grasp, which her neonatologist said was the next thing we should encourage her to work on. Addie and Lily continue to build an amazing bond - they just love being around eachother. It's the best thing in the world to watch.

Tomorrow we are off to Fort Lauderdale with the girls - gotta go pack! Just wanted to get that fantastic news up there. We're off to see family for my nephew's first communion. Staying at the beach... oh yeah baby. Oh yeah.

Thank you all for following Lily's story, for saying a prayer for her here and there, asking after her, thinking of her and importantly - for believing in HOPE!

Forever in amazement!

Things are still going well! Lily has started to laugh, and we've begun feeding her some cereal at night - which she's figuring out. We had Lily's physiatrist appointment last Monday. I'd never heard of one before this appointment, but a physiatrist is basically an advanced, more medically-geared physical therapist (with an MD).

Her physiatrist said she is doing well, on pace with everything - not preferring left over right, moving limbs with symmetry, and her hands aren't clenched all the time, all of which are good signs. As to Lily's tightness, they rank it on a scale from 1 - 4, four being the most severe tightness that barely allows for joint movement. 

She said Lily's arms, hips and legs are at about a 1 or 1.5 - good signs. Her ankles we need to watch out for, though - they are at about a 2.5. Not getting worse, but not getting a ton better with the 2x/week therapy and stretching. 

We talked at length about her 'lower half' - her legs, knees and feet. We've noticed that she seems to have less coordination, more erratic movements with her occasional kicks - and of course there is the tightness issue. Her toes are often  curled/clenched, too - they call this "clawing" in doctorspeak. Her doc recommended increasing physical therapy to 3x/week - twice a week at home with the visiting therapist, once a week at the rehab center. Every other week will be "wet therapy", so in a pool where there's no muscular resistance. Should be good for her - we are making full use of every possible avenue of therapy. We just want her to be able to walk - we're not asking for a field and track star - just a walker. I can't wait for her first steps. Can't wait. 

So, from the waist down - the tightness (hypertonasity) - we are paying close attention to it, but with the physical therapy - hopefully it goes away completely over time. Her central nervous system is still developing - and while Lily's been in our lives for about 8 months, she's only 4 months old developmentally - Sara and I often need to remind ourselves of that. 

For the first time last night, Lily was kicking up a storm in her bath, she seemed to be playing - she was having a blast. It was an amazing moment - I said to Sara "this really makes me feel like she'll be able to walk" - wow. Thats something that never even crossed my head when Addie was a baby... just illustrates how different it is raising a micropreemie. You never quite know, and the little things in life - just a kick in the bath - bring an overwhelming amount of joy. 

What else - Lily's almost 14 pounds now! The circumference of her head is growing on pace - also something we pay close attention to due to the BEH matter. 

And ADDIE'S OUT OF DIAPERS! So awesome. Big step on that one - so proud of my big girl! 

At the end of the month, we're all flying to Texas to visit my Grandmother - she's 97, and she's fighting the good fight! I stopped in to see her two weeks ago on the way back from a business trip. She told me about my great grandmother, a fullblooded Potawatomi Native American who walked and survived the trail of tears - and it hit me - that's part of where Lily gets her strength from. "We're wiiiiilllld Indians, Max - you tell your girls that." I also learned that on my grandfathers side, we're Cherokee (which I knew about) but also Choctaw, which I didn't know. I take a  lot of pride in my native heritage - I sure as hell don't look like it, but I'm a card carrying Potawatomi! Anyway - the girls will be too, soon. I need to get them both updated passport photos and registered on the tribal rolls. 

OK. Anyhow, you didn't check the blog to hear about our heritage - Lily is doing really well, she continues to amaze us every day - your prayers and well wishes truly have worked a miracle, by every sense of the word. Thank you again, everyone, for following Lily's story - she won the battle, and so far she's winning the war too! 

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!!