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. 

Guilty to Grateful

          

Super Jack and me on my first Mother's Day.  He thought I was pretty cool! (2011)

          Today, Jack and I attended the Promise Walk for Preeclampsia for the first time.  Preeclampsia is the devastating disease of pregnancy that led to Jack’s early arrival, just 28 weeks into my first (and only) pregnancy.  Since Jack’s birth, I have carried a tremendous amount of guilt for not keeping him safe, for failing to stay pregnant.  The organizer began to list the sobering statistics, of mortality for mothers and babies, along with prematurity.   And I immediately thought to myself, “Was this a good idea, for me, to be reminded of the trauma of Jack’s early birth?  Do I need to feel guilty, even on Mother’s Day?”  It's not at the forefront of my mind as it used to be, but I am still more than tired of the negative impact preeclampsia and prematurity has had on our family's journey.  We only made it through 1/3 of the walk, due to rough terrain and weather.  On the way home, I decided that maybe I finally needed to stop feeling so guilty about Jack’s early arrival (as in, it was my fault) and start feeling grateful.  Because I am exactly that…grateful.  Jack amazes me every day.  I’m so grateful to be his mom.  

Jack and me during my 2nd Mother's Day (2012).

           In fact, I had an Oprah “aha” moment today when I realized that Jack’s early arrival doesn’t just have to be about my failing to keep him safe.  Instead of feeling so guilty, I can feel grateful.  To Jack.  Because his early arrival saved my life.  That little two-pound baby saved my life and then fought SO hard to save his own.  And he….HE made me a mother.  I am more than grateful that I get to be this little guy’s mommy.  I had very low expectations (for staying pregnant) when I became pregnant, back in 2010.  If I’m being honest, I didn’t even expect for my pregnancy to end with an actual baby.  I bought a single baby item during my pregnancy.  I had an underlying fear that there was something wrong with the baby; turns out there was something wrong with me.  Having no vision of being a mother or having a child, I’m simply in awe of the little boy I am blessed to call my son.  I think it’s more than appropriate to say, on my 3^rd Mother’s Day – Behind every good mom is an amazing kid!  And get this…the amazing kid says I’m his FAVORITE*!  Happy Mother’s Day to ME!  And all of you…

He's my favorite, too!

*A conversation between Mommy and Jack a few days ago:

Jack: Mommy! Mommy! MOMMY!

Mommy: Why don't you ever say Daddy! Daddy! Daddy!

Jack (leans in for a hug): Favorite.  Mommy’s favorite. 

 

Flashback Friday: One Teaspoon

          When Jack left the NICU, he came home with all of the same medications, O2 support, tubes, monitors and care that he required in the NICU...without the help of skilled nurses and doctors.  As the days...weeks...and months have passed, we have slowly shed many of these special needs for Jack.  But, one thing that hasn’t been shed is Jack’s special nutritional needs.  So much of our lives, since Jack was born, has focused on feeding and weight gain for him.  It can be overwhelming and frustrating, especially with a little boy whose weight gain is minimal and slow.  But, we hit a feeding milestone this past weekend when we ran out of Jack’s special formula and he drank his last bottle!  I know, he’s almost 3 and shouldn’t still be getting a bottle.  But, he has been getting a night-time bottle for awhile now, even after we cut out all day-time bottles, in hopes of getting in just a few extra calories before bed (without affecting his daytime food and drink intake).  Luckily for me, it wasn’t a planned milestone, so I didn’t have time to overthink it.  But it was a little bittersweet.  For the past 2.5 years, we have done all we can to ensure Jack’s nutritional needs have been met, sometimes to the point of physical and mental exhaustion, along with a few tears.  Okay, many tears (on my part, not Jack’s).  Jack took the transition like a champ, as he has done with most transitions.  It somehow felt wrong to purposely cut out calories for someone who burns them so quickly, but I know he’ll be fine.  And I only let myself get a little nostalgic about the very first time Jack took a bottle for me. 

Jack's first bottle, 3 months after his early arrival (10.25.10).

          He only drank about 5ml or about 1 teaspoon.  But that 1 teaspoon made me feel most like a mother since Jack’s birth, 11 weeks prior.  I never expected to wait almost 3 months to feed my little boy.  Don’t get me wrong. I had been pumping for months, but all that precious milk was fed to Jack through tubes in his nose or mouth.  There’s something so innate and natural, being able to nourish your child and meet his nutritional needs.  So, you can tell by the grin on my face, how delighted I was to be able to feed him with a more typical method.  We had a long, slow road ahead of us concerning feeding, but this day will always remain one of my happiest, most "mamma" memories from the NICU.  

Me, finally feeling like a mamma...Jack's mamma! 

 

Please Wash Your Hands Before Touching Mine

One of my prized possessions from Jack's NICU stay, proudly displayed with hand sanitizer at our front door!

          One thing I have discovered about preemie parents is that we are serious about our hand hygiene!   One of us even wrote a post about her favorite hand sanitizer!   And for good reason.  Many of our kiddos have lung disease and many of us take precautions to prevent further lung damage for our little ones.  We know we can’t stop them from EVER getting sick.  But since we can’t put a bandaid or helmet or cast on those fragile lungs, we do what we can.  We give daily breathing treatments to keep lungs “open” and decrease inflammation.  We change our lifestyle and spend A LOT of time at home isolated.  We limit exposure to illness by often skipping large family gatherings and avoiding public places (particularly in the first two years).  And, of course, we practice good hand hygiene.  And we ask others to at least do that, for the health of our child. 

          So, what I can’t understand, is why SO many people have a problem with being asked to wash their hands or sanitize them?  Don’t get me wrong, my friends and family were pretty good about following our “rules” and restrictions when it came to interacting with Jack.  And we were pretty extreme.  I know that.  We limited visitors, rarely let others hold him at first, and showered when we returned from work or public places.  But it worked.  Jack did not have a possibly lung damaging illness until he was over 2 years old.  And when he did have that illness, his x-ray proved that his lungs still are not completely healed or fully developed from his premature birth.  I hate to think what a respiratory illness may have done to his lungs in those early months!  We are at the end of our 3^rd RSV/flu season and I can’t help but be proud of how far I’ve come from the days where no one touched Jack and he only left the house for doctor’s appointments.  Now, we still practice good hand hygiene, but we don’t follow the severe precautions we used to like showering after being out in public or at work or not taking Jack to stores or restaurants.  I still like to know if someone is sick, so that we don’t expose Jack unnecessarily.  But now, Jack has playdates with other kids, goes to story time and the park, and really enjoys restaurants!     

          But not everyone’s family and friends are as supportive as ours.  I’ve heard stories of family members who downright refuse to wash their hands or called preemie mama’s “abusive” for even making that request.  Family members who stopped visiting because they didn’t.want.to.wash.their.hands.  How ridiculous does that sound?  I can’t imagine losing time and interaction with a special family member just because of an argument over handwashing!  Blows.my.mind.  Seriously, we aren’t asking you to cut off your fingers…just soap up!    

         In addition, the debate will continue from well-meaning friends and family saying that preemies need to build immunities by being exposed to illness…but for many preemies, coming home from the NICU does not equal health.  Many need time to heal and recuperate from their premature birth.  They DO NOT need to build immunities or be exposed…at least for the first year and possibly the second.  It’s a simple as that.  Tatum, at Ain't No Roller Coaster does a great job of explaining in this post:  But, preemies have to get sick to build their immunity, right?  Preemie parents are protecting the health of their child…the health they prayed for and their child fought for.  Why anyone would contest that is beyond me.  

Wash your hands.  Stay away if your sick.  There.  I said it.   A preemie parent thanks you!

The sign used to hang on Jack's car seat and eventually his stroller.