Lilypie Premature Baby tickers

Lilypie Premature Baby tickers

Sunday, August 9, 2015

Faith. Hope. Love.


I was afraid of all of those things 5 years ago when Jack was born. 

It’s so hard to express what I want to say about the last 5 years.  The heartbreaking acceptance that giving birth at just 28weeks and 5 days was the only way to save my life and my little boy’s.  We had only discovered he was a boy just a few weeks earlier and had to make a sudden decision to give him a name, as I was being transferred to a hospital that could better take care of him, so small and so early.  His birth started as vigil against death, by two traumatized and frightened parents.  Afraid to love.  We watched that little boy fight against a machine that was keeping him alive.  We celebrated when he won the battle against that machine and began to breathe on his own.  But yet we still held our own breath.  And maybe I still am. 

So many things have happened since those early months…some I have shared through our blog, some are just thoughts on a page, still others I have kept to myself for they are just too hard to reveal, making them more real than I care to remember or think about.  But through it all, Jack Ryan has revealed himself as an amazing little boy…who is not so little any more.  He’s enamored by anything with wheels and remembers his manners most of the time.  He asks hundreds of questions a day…most of which he usually knows the answer.  He likes to snuggle on the couch and cuddle in the rocking chair before bed (his distinctions).  He calls his little sister “babe” as she steals his toys and when he introduces himself to someone new, he always says my sister Harper is one.  He sings “I love you so much Harper,” but then tells me to stop singing because I have a terrible voice (which is so true).  I’m pretty sure he can read.  He doesn’t like to write, but he does like to run.    He loves yard work and noodles with parmesan cheese.  He's ready for another year of preschool, but he doesn't want to learn anymore songs!  He can jump far and swim underwater.  He's always asking to bake something or to go somewhere.  His brain works faster than his mouth.  And he doesn't want to nap ever again.  He will wear Green Lantern undies, but not the Flash.  He is everything I was afraid to hope for.  And so much more.    

While the past five years have felt like a lifetime in some ways, we also have hope that our little man has a lifetime ahead of him. Even though prematurity is still a “big player” in our lives, we have faith that it won’t always be that way. 


Tomorrow, he will be five.  All of him, who he is and who he will be, I did not allow myself to imagine five years ago.   But now I have faith.  I have hope.  And more love than I could ever imagine for a little boy.  Jack Ryan.   

A treasured piece of art created by Jack's cousin, Alexis.  Jack, at birth, on 8/10/10.  Jack now!

Thursday, June 4, 2015

Re-grieving



A friend posted this link (The hard part of easy: when your second child doesn't have a disability) from the blog, What Do You Do, Dear? on FB today and as soon as I started reading, the tears began to fall, fast and furious.   (Apparently I've been holding them back for awhile.)  
 
And I wrote this message to her:

“I had to wait till I stopped bawling to thank you for sharing this. It is EXACTLY how I have been feeling since Harper was born and thought that there must be something wrong with me because my experience with her wasn't as "easy" or "healing" as it was supposed to be!!

You see, ever since Harper was born, I’ve had this internal struggle concerning some of my thoughts and responses to having an almost full-term, but still healthy baby.  I mean, isn’t that exactly what I had wished for Jack?  Right after he was born, I was ready to have another baby.  I wanted a do-over.  When he was born, any and all expectations I had were completely overturned and upended.  Most actually ended up in the trash.  And I so grieved a “normal” and healthy start for him and for me.  I figured there was no way that would happen again with the new baby (after she arrived safely, of course). I assumed, and everyone assured me, that this baby would be SO much easier and would help heal some of the pain from my experience as a new mom to an extremely premature and extremely sick baby.  But it’s not just Jack’s NICU stay that was traumatic.  It was his first few years, as he (and I) fought for each milestone…from breathing on his own, to eating without a feeding tube, to jumping with both feet...the fight continues even now, almost 5 years later.  So when Harper arrived, I was simultaneously overjoyed and sad....relieved, yet reliving the guilt and pain from Jack’s birth, infancy and toddlerhood.  Her arrival and the months since have been anything but easy, and nowhere near healing.   I have marveled at the ease in which Harper does all the things that Jack worked so hard to accomplish.   The author describes it much more eloquently than I can:

"Every high was a low. Every single easy– the smooth curve of her back unbound by gauze and tape, the morning change of her clothes wherein there was no part of her I wasn’t allowed to touch, the steady breathing that just happened without prompting– was a unique kind of hard."

And it makes me happy for Harper, and sad all over again for Jack’s rough beginning.  Is re-grieving a word?  Because that’s what I feel like I’ve been doing.  While I was pregnant with Harper and feeling like a ticking bomb, I wrote about living in two different worlds.  And now, I feel like I’m living a double-life…as "two different moms," like the author's friend suggested. And reconciling the two can be difficult some days.  As the author writes, “It opens a door to what might have been. It breaks you in two.”  

But I am so grateful to have these two kiddos to help me along the way.  

Sunday, January 4, 2015

Best Christmas Ever

When Jack was in the NICU, part of me had a hard time believing that he would someday be eating wrapping paper as a toddler or opening gifts as a pre-schooler.  I wouldn't say I was a pessimist, more like a realist.  I knew too much about what could go wrong to get my hopes up about what could go right.  Until Jack came home, just weeks before Christmas.  While things weren't exactly "right" that Christmas in 2010, I finally started to believe.  And every Christmas since then has been the Best Christmas Ever!

So Jesus said to him, “Unless you see signs and wonders you will not believe.” John 4:48


Jack's 1st Christmas...he had been home from the NICU for just 25 days and was almost 5 months old (2 months adjusted).  What a great Christmas gift.  While he was well enough to come home (on O2 and with an NG tube), he was not well enough to be exposed to large groups of people and their possible sick germs.  We spent quality time at home, adjusting to life there instead of the NICU. 

Christmas 2010...when I started to believe. 

Jack's 2nd Christmas...he was almost 16 months old and just started standing on his own.  He was off O2 and eating better without the NG tube.  We were able to take him to family Christmas events, but were still very cautious about keeping him healthy.  He was really into presents this year!  

Jack receiving the first gift of Christmas 2011.

Jack's 3rd Christmas was lots of fun!  We went to family events without worrying too much, especially because Jack had already handled his first cold and ear infection rather well (after his 1st trip to Disney).  He was a little over 2 years old and loved hanging out with family and friends during the holidays.  

Christmas 2012...our own Elf on the Shelf.

Jack's 4th Christmas started out great...he was excited for all the family events.  He loved his new Hess truck from Uncle Ry and was pleased to share it with everyone he saw.  But, he did end up with a bad ear infection on Christmas Eve that put a damper on things.  At 3.5 years old, he was a little more particular about what he wanted from Santa, but didn't actually want to talk to the big man himself.  Jack was really looking forward to after Christmas, when his little sister would arrive!
 
A big smile, but no words, for Santa...Christmas 2013. 

This year, Jack's 5th Christmas, proved to be pretty exciting for our big boy of four and a half.  We held the Christmas Eve family festivities at our home, which was nice.  Jack is going through the "I want to open presents right now" phase, which wasn't exactly pleasant at times, but we survived and he's back to his happy self.  He especially enjoyed helping Harper open her gifts. 

Christmas 2014...Santa's Little Helpers

I have always loved Christmas, but each Christmas since my kiddos have arrived has been the BEST.  I look forward to many more Christmas seasons and traditions with our family of four (plus many more!). 

P.S.  Hope to start blogging more...I have so many things to say, but little time to write.  I head back to work tomorrow, so maybe the structure will allow more time? 



Monday, November 17, 2014

765.03

765.03

765.24


 

Those numbers...they are prematurity*.  They are two of the diagnosis codes assigned to Jack, at birth and even now.  The first, for his extremely low birth weight (under 1000 grams) and for his level of prematurity.  The second, for the weeks he lived inside my womb.  Just 28 weeks. 
It never occurred to me to care about these numbers until yesterday.  I knew World Prematurity Day was coming and I was dreading it this year.  I'm at a stage where I just wish I could get through a day without thinking of prematurity.  A fellow blogger, Becca, wrote about it recently:  "This Year’s Prematurity Awareness and Me" at Cheering on Charlie.  

And I commented: 
"I always think…that I would love to have just one day…just one
day, where prematurity doesn’t enter my mind in some way. 
It hasn’t happened yet. 4 years later. I want everyone to know
about it and care about it and help make it go away.
But I also don’t want to think about it anymore.
Endless, vicious cycle."

There ARE days when it is just a passing thought.  There are days when it affects all that I do.  There are days, like right now, where I'm pretending prematurity doesn't affect Jack and I'm not asking/forcing him to wear his new braces on his little feet.  They sit on the counter, adorable, but unused.  What would happen if I kept pretending?  Would I damage his muscles and tendons so that he couldn’t play soccer in 4th grade because his ankles are still weak?   What if I stop doing the OT and PT homework with him?  Will he have trouble writing his name?  If I pretend that prematurity doesn't exist anymore, what kind of mother am I?  If I pretend prematurity doesn’t exist, what kind of Jack would Jack be?  The precarious balancing act between juggling prematurity and my awareness of how it might impact Jack…and living a typical life, so that those diagnosis codes are just that, numbers on a billing sheet and nothing more, is a daily struggle that today I’d rather do without.     
So today, I begrudgingly write about prematurity, even though I am in denial mode. (Or what I learned yesterday at the Preemies Today conferences is "survivor hinder" mode, when everything is just "fine.")  I talk all the time about how prematurity's effects are life-long, but I secretly want to be done with prematurity four years into this journey.  I know better.  Prematurity did not end when we left the NICU.  It didn't end when Jack turned 2.  It's not over, just because he is successful in pre-school.  And it may ever end.  For him.  For me.  For our family.  Although, I am always hopeful that its impact will continue to lessen as the journey continues.  But, until there is a day when other families DO NOT have to think about prematurity…DO NOT have to watch their babies struggle to survive…DO NOT have to think about prematurity daily...DO NOT have babies assigned diagnosis codes like 765.24…I will continue to share, make others aware.   Especially on days like today.   

WORLD PREMATURITY DAY 2014
For all the awful things that prematurity has brought into our lives, none of that can overshadow the awesomeness that is our JACK RYAN! 


*(Source: http://www.fortherecordmag.com/archives/ftr_070708p28.shtml)

Tuesday, October 28, 2014

This Is Just To Say




10/28/10 - Jack's due date

October 28

Today was Jack’s due date, four years ago.  Even before I was pregnant with him, I had no idea how elusive a due date could be.  In fact, I mostly knew of pregnant mamas, hoping, wishing and praying to deliver before their due date to alleviate the discomforts of pregnancy.  And I totally get it.  They really have.no.idea.  No idea what it is really like to deliver early.  Too soon.  I never really experienced any discomfort in my pregnancy with Jack, until the final week before he was born.  And even that, I would have suffered through much longer, if they would have allowed me to, if I had only known how little my discomfort compared to what Jack would go through (once you are a mom, near death for yourself often seems an afterthought compared to your child's survival)His due date would then become the oh-so-hoped for date that we thought he would come home, healed and happy.  But he didn't.  He would spend another month in the NICU and would come home, still sick and recovering from his early arrival.  Even with Harper (my "normal" pregnancy), I was in a severe pain after about 30 weeks (which I later found out was from scar tissue from my previous c-section.)  Yet, I never wished for her to be born before her due date, even though it was inevitable.  I didn't want to deliver too soon, again.  Even when my doctor gave me a choice of January 27-31, I chose the latest date (the 31st) and he looked at me like I was crazy (although I did feel a sense of relief when my c-section was moved up; I finally felt as though I might survive the pregnancy then).  But, in the world of prematurity, even those few days can make a huge difference.  That’s why we say our babies were born at 28w5d, rather than just 28 weeks.  In some small way, we are proud to have made it 5 days longer.  Hoping in some way it helped our baby grow and develop just a little bit more.  So, four years later and in the style of William Carlos Williams….

This Is Just To Say
I have not forgotten
the tiny babe
that suffered and survived in
the plastic box

and which
you were probably
thinking I might have
or should have

Forgive me
he was unexpected
so early
and so perfect.



And now for a good, old-fashioned Jack update:
Jack is FOUR!  He loves trucks, cars, tractors (John Deere, specifically), books, yard crashing with Daddy, and his bedtime ritual with Mommy (books, cuddles, prayers and good night kisses).  He is really starting to enjoy playing with Harper (but that is probably because she can’t get into his toys just yet.)  He is in his 2nd year of preschool (new class, new teacher) and attends 3 days/week.  The first few weeks were a little rough (not participating, tearing papers instead of painting or writing, etc.), but I think he really loves his teacher and her structured time and activities.  I’m not completely sure of his weight and height, but he did weigh around 31lbs at his last pulmonology appointment.  He still uses a daily inhaler to keep his lungs "open" and we add a 2nd inhaler (steroid) as soon as I hear a cough or runny nose.  I used to try to wait it out, see if his lungs could handle a cold without extra meds, but I know better now.  His lungs just aren't developed enough yet.  In time, we have hopes that his lungs will be stronger.  We go for his 4-year check-up next week.  (I choose to do his yearly check-ups closer to his adjusted age, even though most medical professionals and preemie parents stop adjusting at age 2.  I find that he is typically closer developmentally to his adjusted age, rather than his actual.  So, again, catch-up by 2 is just a ridiculous amount of pressure to put on parents and these early and so small babies.  Especially if they come home from the NICU still sick/recovering/healing.)  Jack’s favorite food is probably wagon wheels with butter and parmesan cheese and he also loves chocolate milk and “green” chips (sour cream & onion).  He says the funniest and most intelligent things these days and has recently become extra affectionate, giving squeezes (hugs) and kisses and “love you” all the time.  He was discharged from speech therapy, but still receives OT and PT at school.  OT works on fine motor skills, particularly those related to school (cutting, gluing, and writing) and some related to home (dressing, drinking from an open cup).  PT works on large motor skills and strengthening his core.  Just the other night he raced up stairs, without holding on and only one foot per step.  It was an awesome sight to see.  Even better, he is able to jump, with BOTH feet off the ground!!  (This is a milestone typically reached by 24 months.)  So exciting for us and for him.  
video