Lilypie Premature Baby tickers

Lilypie Premature Baby tickers

Wednesday, August 24, 2016

"He's Not Going to Go To Kindergarten With It"

   When Jack was in the NICU and on one type of breathing support or another, his nurses liked to say, "Don't worry, he's not going to go to Kindergarten with it."  But I worried.  Some NICU parents are optimists.  They can envision their child in the future, heading to school or playing a sport. Others, like me, just lived in the present, making it through each day.  I found it hard to project into the future.  Maybe it was because Jack was our first child.  I had no other parenting experience.  So I didn't see him on his first day of school or at his first soccer practice.  Kindergarten seemed SO far away.  And now it's tomorrow.  

     My way of coping (living in the present) actually turned out quite nicely, though, because each new thing Jack does or each new moment we experience together is always a nice little surprise.  But his special NICU nurse could see his future and probably aren't surprised.  One nurse in particular, we call her Aunt Cindy, told me about a dream she had of him after he had been in the NICU almost 3 months.  She dreamed that Jack was in his Kindergarten classroom and she was standing at the back. (Mind you, he weighed about 4 pounds at the time she had this Kindergarten dream and was still using C-Pap for breathing and was getting his nutrition from a feeding tube...and lived in a hospital.  I couldn't see past all of that.  But she could.)  As she watched him in his classroom, he turned to her and said, "You can go now Aunt Cindy."  That was it.  A simple dream.  But I'm so grateful she told me about it.  She helped me look forward to something that I was afraid to dream of for our Jack Ryan.  Those NICU nurses.  They save babies...and their mamas too.

     I had to leave him every day, for 112 days, while he was in the NICU.  (I know I mention that A LOT.  It's not something you ever forget, the leaving.)  So sending him to Kindergarten isn't giving me as much anxiety as I had thought.  I've had to let him go so many times before.  But this "letting go" is so much different.  Then it was drenched in fear; now in pride.  Our boy has grown so much, in so many ways in the past 6 years.  He has worked hard.  So hard.  And now he's ready to take on the world.  Ok, maybe just Kindergarten.  But he is ready.  I'm not going to make any predictions, but I can't wait to see what his future will be.

(Pictures of the first day, accompanied with a full report, will follow!)

Wednesday, August 10, 2016


On the night you were born
The moon smiled with such wonder
That the starts peaked in to see you
And the night wind whispered,
“Life will never be the same.”
Because there had never been anyone
Like you ever in the world.
So enchanted with you
Were the wind and the rain that they
Whispered the sound of your wonderful name.
Heaven blew every trumpet and played every horn.
On the wonderful, marvelous night you were born.
(On The Night You Were Born by Nancy Tillman, 1995)

6 years ago, at 10:12pm, my life changed completely when our 2-pound baby boy entered the world.  And since that moment, I have had so much to say about Jack and this journey.  His journey.  My journey.  Our journey.  I still have a lot to say, just not as much time to say it.  Plus, he’s been talking for himself these days.  Non-stop talking.  (Perhaps he’ll start writing, or at least dictating, his own posts soon.  He’s a whiz with an iPad.)  But, as Jack turns SIX and gets ready for Kindergarten, I was trying to think about what I wanted to say to his teacher.  Do I tell her everything, or just the basics.  Or nothing at all.  Blank slate?  Or book filled with pages? 

And I decided that all I want her to know…all I want anyone to know about Jack…and most importantly, what I hope Jack knows about himself.   That he is enough.  That he is amazing.  Simply because he is Jack.  He’s not amazing because of all the awesome things he has accomplished in the past six years, of which there are many.  He won’t be amazing for all the wonderful things he will do in the future.  All of that may be outstanding.    But all of those things don’t make him amazing.  He is here.  He is alive.  He is Jack.  Or, in other words, amazing. 

Happy 6th Birthday, Jack Ryan!

Monday, October 26, 2015

Better Birth Days

5 years ago, I should have been anxiously awaiting the birth of my first child.  I should have been exhausted and excited, complaining about my soon-to-be little boy kicking my bladder and sending me to the bathroom throughout the night.  I should have been washing crib sheets and onesies in preparation for our new arrival.  I should have been watching his movements through my growing belly.  This Wednesday, October 28, marks 5 years to the day that Jack should have been born.  

Ah, what should have been.  It's a real shock to the your your heart...when things don't go as they should have, especially when it involves your dear little boy. Upended expectations. Heartbreaking decisions.  Life and death.  All of those things surrounded Jack's birth day and the many days that followed.  In fact, for me, Jack's "birth" includes much more than the actual day.  The 112 days he spent in the NICU plus the 3 days "we" were hospitalized, trying to hold off the inevitable early delivery that preeclampsia so often forces upon an unsuspecting mother. And even all those days at home, breathing with O2 support, feeding through a tube, and isolating from illness.  

All those "should have beens" are the reason that I am still talking about Jack's birth day.  Preeclampsia devastated our expectations.  Shattered our "should have beens."  Even as we joyously celebrate each of Jack's birthdays, my emotions and my memory of the traumatic events are as fresh as the day they happened.  In fact, I recently learned that traumatic memories are stored in a different area of the brain and are less likely to fade like typical memories.  It makes sense.  But it doesn't make it easier when seemingly innocent moments of today are suddenly awash with waves of fear and heartbreak of years past and what should have been.

So this week, I changed my profile picture on Facebook and I blog after months of not writing, because I want birth days and birthdays to be happy for so many babies and their parents.  I want their to be a cure for preeclampsia so that Harper doesn't have to inform her doctors 30 years from now that she may be at risk for this awful disease.  

So please, help us make birthdays better by being informed:  
Signs and Symptoms of Preeclampsia

Or better yet, donate:
Preeclampsia Foundation Donate

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


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?