Jack's been keeping a secret...

Click on the video to find out what he's been hiding...

http://www.youtube.com/watch?v=q3bDbO9fpFQ&feature=youtube_gdata

For Good

There are so many things I could say about Jack turning 3.  I mean, this boy amazes me every moment of every day.  That allows for a lot of bragging about my little dude.   He makes me smile and cry, laugh and sing.  And he always.always makes me feel extremely blessed to be his momma.  I’m not really sure what I ever did to deserve such an awesome kid, but I’m glad I did it.  I feel this way about Jack every day.  Not just on his birthday.   His last two birthdays caused a mix of emotions as we remember his early arrival and rough days that followed.  While we will never forgot those days that made us the family we are today, this 3rd birthday definitely seems to consist of more LIVING than reliving.  That's a good thing.  But, if I think about what I've done for Jack the past three years:  I spent hours upon hours in the hospital.  Left my job and career.  Changed many, many stinky diapers.  Played trucks every day.  Fought with insurance companies.  I became nurse, doctor and therapist.  But none of that compares to what he has done for me.  He has changed me…

for good. 

For Good
(from Wicked)

Birth Day 8.10.10

I'm limited.
Just look at me.
I'm limited.
And just look at you.
You can do all I couldn't do.

So now it's up to you,
For both of us.
Now it's up to you.

First Birthday 8.10.11

I've heard it said,
That people come into our lives
For a reason
Bringing something we must learn.
And we are lead to those
Who help us most to grow if we let them.
And we help them in return.
Well, I don't know if I believe that's true
But I know I'm who I am today
Because I know you.

Like a comet pulled from orbit
As it passes a sun,
Like a stream that meets a boulder
Halfway through the wood.
Who can say if I've been changed for the better
But because I know you.
I have been changed for good.

Second Birthday 8.10.12

So much of me
Is made of what I learned from you.
You'll be with me
Like a handprint on my heart.
And now whatever way our stories end
I know you'll have rewritten mine
By being my [son.]

Like a ship blown from its mooring
By a wind off the sea.
Like a seed dropped by a sky bird
In a distant wood.
Who can say if I've been changed for the better
But because I know you...
Because I know you...

Third Birthday 8.10.13

I have been changed for good.

Happy 3rd Birthday, Jack Ryan!

A title eludes me...just read!

Parents of premature babies fight for a lot of things..to get their child the services they need...to make others aware of this journey...I could go on.  But none of us...I repeat NONE OF US should have to prove that our child is worth saving, worth living, worth fighting for.  But, if you read this article and many of the self-righteous, judgemental comments:

End of Life, at Birth

you'll understand why parents of premature babies do so much to advocate for their children.  Why they fight, and why, at times, they may seem a little sensitive to certain comments.  It blows my mind that so many who have not experienced prematurity seem to think that they know the right thing to do and feel as though they can judge despite their lack of experience and knowledge.  And it blows my mind even more, if that's even possible, that anyone believes that they have the right to determine whether a child, someone else's child, has worth.  I guess I should feel "lucky" that Jack was born just past the 28 week mark, because otherwise, in the opinion of too, too many in our society, he may not have been worth saving.  I literally could vomit just thinking about the possibility that I would ever have to prove to someone that Jack is worth it.  Don't get me wrong, I absolutely believe that parents (and society) should be as informed as possible about prematurity.  (Obviously, that's why I do so so much advocating and educating.)  But, here's the thing...premature birth is often an unexpected, sudden, fast-action event where information and knowledge (although it may be given) is often overshadowed by the emotions and fears of parents.  Parents whose expectations have been thrown out the window and shattered on the ground below.  We were informed, but we were also overwhelmed.  Hearing the statistics and outcomes is a lot different than living them.  Even so, Jack was "worth" it then.  Jack is "worth" it now.  And the only perception or judgement of that worth that is valid is mine...his father's...and his own. 

Pretty sure he is certain of his worth. 

Summertime

It's been almost 2 months since I've blogged.  So sorry to my few loyal readers!  I took a short-term subbing job until the end of the school year and then...summer.  And we all know how that goes.  I have a few surprises and updates planned for the next few weeks, but for now, take a glimpse at Jack's summer so far.  There's nothing better than spending days with Jack...especially summer days!   Although we are finally past days of isolation to protect his fragile lungs, it still seems like I am able to relax about his health much more in the summer.  Not that Jack feels any of that anxiety about his health.   Here's proof: 

Hot Fun in the Summertime

Flashback Friday: Children's Miracle Network

I'll be the first to admit that I used to pass over the yearly telethon for some other show (probably on HGTV or Bravo).  I knew what Children's Miracle Network (CMN) was (or so I thought), but I didn't feel any real connection to it.  Since Jack was born and we've had first-hand experience with what CMN really does, I couldn't be more willing to share our story if it means more families will be supported like we were at Penn State Hershey Children's Hospital (PSHCH).  Giving, in whatever way possible, to an organization that directly impacts my child...I don't know if there is a word that adequately portray what my heart feels.  Grateful.  Indebted.   Warm and fuzzy.  Surreal. 
 
Back in March, producers came to our home to interview us and Jack.  They wanted to hear our story and our experience at PSHCH, which of course brought back some painful  emotions and flashbacks to moments best forgotten.  They think he's a miracle.  And that we are a "Miracle Family."  In some ways, that "miracle" label makes me uncomfortable.  As you'll hear in the video, my husband and I think all babies are miracles, not just Jack.  After experiencing fertility issues, premature birth, and subsequently learning how difficult pregnancy and childbirth really can be, I often think that having a "normal, healthy" pregnancy resulting in a "normal, healthy" baby is completely miraculous, really.  However, my small twinge of discomfort won't stop me from supporting this great organization.  They support families behind the scenes, through equipment and staffing, and do great things for the kiddos affected by illness and injury.  They connect families and foster lasting friendships.  Everything they do has a direct impact on children and their families.
 
Don't worry, I'm not going to direct you to my fundraising page or ask you to call in.  I get it.  This is a rough economy.  And a lack of connection makes it difficult to be moved to donate or support a cause.  I didn't often do so...until my little guy...our family...we ARE that cause.   But at the very least, watch this clip.  (It's worth it for the Jack cuteness!)  Don't change the channel this time, like I used to. 

Meet  Jack - Children's Miracle Network 2013 - Penn State Hershey

or this one:

Meet Jackson - Children's Miracle Network 2013 - Penn State Hershey

and one more:

Meet Kayley - Children's Miracle Network 2103 - Penn State Hershey

Flashback Friday: Schooled

Me (2nd from left) with a few of my special teacher friends (2009). 

     It was just about three years ago this month when I was 4 months pregnant and finishing up the school year as an elementary librarian.  It had actually taken me a long while to figure out what I wanted to be when I grew up.  I was forever a student.  Graduating with my B.A. in English, I immediately applied to graduate programs and eventually earned an M.A. in English – Literature.  During that time, I did realize that library science was probably the field for me, since I loved books and reading.  So, back to school it was, for an M.L.S. and K-12 Library Science teaching certification.  I got my first job, serving two elementary libraries.  I moved on to a single school and also started working toward a Doctorate in Educational Leadership.  (Yep, still a student, even as a teacher.)  I had actually just finished up two doctoral courses in the weeks before Jack was born!  So, basically, from my first day of Kindergarten, back in 1982, until July of 2010, I was either in school as a student or as an educator or both.    Twenty eight years in education!  During all that time, it never occurred to me that I would ever leave this field or ever be a stay-at-home mom. 

August 10, 2010 10:12pm-  The Beginning of NICU 101

  

     The moment Jack was born, I was thrown into a whole new world.  A world out of my control and one in which I would quickly be “schooled.”  I was definitely being educated and, at first, not by choice.  For no one chooses this type of education.  After the first few days of post c-section and traumatic premature birth haze, my new “course” in NICU 101 (and 102 and 103 and …) began and I was a model student.  I took notes, asked questions, and did my research.  I could distinguish between A’s & B’s and RSV.  I started getting questions about my “medical background” and “Was I a nurse?”  No, I didn’t have a medical background.  Nor was I a nurse.  But I knew that my current subject matter, Jack, would be the most important thing I ever studied.   During this time, I used my 12-week FMLA leave and extended that even longer, until the end of the school year.  

 

"Life After NICU" Begins - Discharge Day, 11/30/10

     When Jack came home from the NICU, my education continued.  This time, it was “Life After NICU” or “Prematurity:  What They Don’t Prepare You For.”  I learned everything I could about the impact of prematurity on Jack’s lungs, his brain, his development…everything.  I heard sad stories and hopeful stories.  I learned about Post Traumatic Feeding Disorder and Sensory Processing Disorder.  I educated myself on Pediatric Low-Flow Regulators for Oxygen Concentrators and programming Zevex EnteraLite Infinity Enteral Feeding Pumps.  I discovered Vestibular Stimulation and “preemie teeth.”  I learned to weigh in kilograms, rather than pounds.  All of these things, I needed to know, if I wanted to be the best mother I could to Jack.  In that first year, I became a student of Jack and of prematurity.  We definitely spent a lot of time at home…and I earned that stay-at-home-mom status!     

My teacher at the beginning of our 3rd year together (August 10, 2012). 

     Because of Jack’s extra needs, I was given an extended unpaid leave of absence from my job for a 2^nd year.  Not many employers will do so and I’m forever grateful to my school district for holding my position.  I’d like to think they did so for two reasons:  I was a valued employee and my district embraces family-centered ideals.  Yet, I was still a student of Jack and of prematurity,  finally learning how to be more of a momma than a nurse.  It was near his 2^nd birthday that I had to make the difficult decision to resign from my well-paying, great benefits career for which I had worked so hard.  But I also knew that my more recent “mama” education still needed to be developed and, more importantly, put to use.  Jack’s development was at a critical stage and I knew that I needed to work with him on his therapy “homework.”  I was anxious to talk with my supervisors about my decision, but I received both enthusiastic and supportive responses.  And I knew that the decision wasn’t really a decision.  Really, the only option for me…for Jack…for was to continue to be with him.  

All packed up after resigning (July 2012).

     Forever a student, I always think of years in the “school calendar” sense, from August to June.  (July is just a bonus month).  As Jack approaches three, I have no regrets about leaving my job as a librarian.  For this past “school year,” I have become completely entrenched in the teachings of a toddler.  From train tracks and digging in the dirt to playdoh and pee-pee potty.  This past year, when I was no longer on leave from my job, I finally felt like my time with Jack wasn’t just temporary or that my career wasn’t just on hold.  My career had actually just transformed.  Actually, just the location has changed.  For I’ve always been and still am…Student…Teacher.  And, now, I’ll always be…Mother.   

What an education this little boy has given to me.  Nearing the end of year 3...I've almost earned tenure!

P.S.  Sorry I haven't been blogging as often as usual.  I've been back at work, subbing in my old library for the current librarian who is on maternity leave! 

Madame Kangaroo

          Today is International Kangaroo Care Awareness Day.  Kangaroo Care is a method of holding babies with skin-to-skin contact.  Many labor and delivery units are now practicing what they call the "golden hour," where a newborn is immediately placed on mom's chest after birth, so they can begin the bonding process.   Preemie moms rarely, if ever, get that "golden hour."  In fact, they usually have to wait hours, if not days, to even see their little one.  Any length of time separating a mother from seeing or holding her child for the first time is heartbreaking.  Whether it is 3 hours, 3 days or 3 months.  Any length of time is too long to not hold your baby.  Too long to not feel their skin against yours, their little breaths, their soft hair.  There's something about feeling the weight of your child against you that just feels so natural and so necessary.  Moms of premature babies leave the hospital, with empty arms aching to hold their child.  But, when they do finally get that chance, Kangaroo Care is the most healing hold for both mother and child.  
         

Enjoying some KC when Jack was 1 month old (9.16.10).

The first time I held Jack, he was 11 days old and still weighed just over 2 pounds.  He measured only 12.5 inches, his head on my chest and his feet at my belly button.  But the weight of him  and the weight of that moment was so much more than that simple unit of measure.  The first time Jack snuggled into my chest and almost every time after that, his heart rate stabilized.  His breathing patterns became regular and his oxygen saturations (O2 sats) improved.  He cried less, ate better, and slept more.  My milk supply increased and our bond intensified.  My feelings of helplessness decreased and my sense of motherhood grew.  As far as I know, there's no medicine that could ever do all those things at once.  So, I held Jack using Kangaroo Care as often as possible during his 112-day stay.  I held him so often, that one of the attendings named me "Madame Kangaroo" and told me, "That's where all our babies should be."   A proud moment in an often guilt-ridden experience.   

I guess if I'm Madame, then he's "Mister Kangaroo." 

Lately, Jack has been really wanting to cuddle.  His head now rests on my shoulder and his feet reach to my knees.  Even now, 2.5 years after our first Kangaroo Care hold, the weight of Jack and these loving moments are so much more than his slight 24 pounds.  And we are still the best medicine for each other.