Lilypie Premature Baby tickers

Lilypie Premature Baby tickers

Thursday, June 12, 2014

Almost Four

Jack is almost four years old.  I stopped holding my breath after we made it through his first year.  And then finally, he was the magical age 2 (you know, when all preemies “catch up.”  As if.).  And three just went by in a flash, probably because I was pregnant with little Harper and slightly out of touch.  But, four, really.  My little 2-pound baby is going to be 4.  I’m amazed every day at who he has become and in awe of who he might be.  But if anyone thinks, for one minute, that I have forgotten where and how he began…they would be sadly mistaken.  I haven’t forgotten and I really don’t want to or feel the need to do so.  It’s not something I think about every day, at least the specific details, but the emotions behind that beginning have stuck with me, for sure.  Just this week, we sent Jack to his preschool’s “Camp Smile-A-Lot.”  He just finished his first year and I’ve got to say, I didn’t get too emotional about leaving him there or worrying about him while there.  But after his first day at camp, I picked him up and saw scraped knees and elbows and even a bloody scratch on his face.  Now, don’t get me wrong, this kid has hurt himself more often than I can count.   And I’m usually there to give him a quick hug and a kiss on the newest bruise or boo-boo.   But this incident, for some reason, had me very emotional.  And then, today, his third day, at drop-off, he pleaded, “Mommy don’t go” more often than I would have liked.  Both of these moments brought a lump in my throat and tears to my eyes.  I chastised myself, wondering why I could possibly be so emotional about something so minor.  And it hit me…we are less than 2 months from the anniversary of the day when it all started.  The day, when I suddenly couldn’t help him when he was “hurt” and I had to leave him too.too often.  The day, when I wasn’t always there for him when he needed me or when he cried (and unfortunately I can never forget the dad of another patient telling me that Jack cried all the time while I was gone.)  While he can now tell me when he hurts or ask me not to go, he could not then.  But I knew it.  I knew he hurt.  I knew he struggled.  And I couldn’t be there and too often, I couldn’t hold him to make it better.  That kind of heartbreak just can’t be forgotten.  It may be felt less often, but I have a feeling it will always be part of me.  (Strangely enough, a new preemie mom was discussing the emotions involved and today I could tell her that they never really go away, but are easier to handle as the years pass.)

Moving on for some regular updates:  

  • Jack finished his first year of preschool and got a glowing report card from his first teacher, Miss Sheri.  By the way, I couldn’t have picked a better teacher or program for Jack’s first school experience.  
  • Jack and I just returned from a mommy-son mini-vacation.  We had the best time in Florida, visiting Jack’s Great Aunt Sue.  He spent HOURS in the ocean, which means I didn’t get to relax, but we had a great time together.  He’s a great traveler.    (And yes, I left little Harper with her daddy.  She’ll never know.  And her infancy, while perfectly typical and pleasant, is too often causing me to flashback to Jack’s, which was not at all typical and often painful, for both of us.   I needed a few days to clear my head of all that!  Plus, every mom deserves a break.  If you can call traveling with a 3 year old a break!) 
  • Jack is currently obsessed with the makers of cars these days.  He knows the difference between a  Toyota and a Subaru and even between a Honda and a Hyundai. 
  • Jack is doing great with all his therapies and will most likely be released from Speech and possibly OT, although I still see a lot of fine motor issues that I’d rather be resolved now instead of causing problems for him with handwriting or other activities in elementary school.  Same goes for PT.  Looking at Jack, you probably wouldn’t see the PT concerns.  But, look at Jack and other kiddos his age or younger, say at a birthday party involving bounce houses and climbing ladders and you will see the issues he has with motor planning and core strength.   He’s also been “released” from seeing the eye doctor for 2 years!  If you’ve ever taken a toddler/preschooler for an eye exam, you know how exciting this 2 year break is. 
  • We are still working on potty-training.  Jack knows when he has to go and how to go, but is just too busy! 
  • The other day I passed a large truck on the road and Jack called me a GENIUS!  I’ll take it. 
  • Jack has decided that he has mommy and Harper has daddy.  That is all. 
  • Jack apparently puts himself to sleep by counting vehicles instead of sheep.  
  • Parenting two kiddos - I feel like I’m a pretty good mom to Jack.  And I also feel like I’m a pretty good mom to Harper.  But being a mom to Jack AND Harper…that’s hard!  
  • I think Jack likes Harper.  He imitates us by getting close to her face, shaking his head back and forth, and shouting “You’re a cutie!” in a very high-pitched voice. 
  • Harper is 4 months old and weighs a little over 14lbs.  Just for comparison, Jack weighed just 15lbs when he was 1 year old (or 9 months adjusted).  She is starting to sleep for longer periods at night (sometimes from 7:30pm to 7am) and wants to sit up rather badly.  Still not rolling over because she dislikes tummy time.     She always has a smile, unless she is hungry, and is even starting to giggle. 
  • Hmm….what else?  Looks like I will be staying home with Jack & Harper until January 2015.  Since Harper is our last baby, I’m glad to be able to spend extra time with both of my kiddos before going back to work. 

Monday, May 12, 2014

Something Else I Was Supposed to be Doing

As a young girl/teen, I didn’t often dream of getting married and having children.  In fact, for a long time, part of me wasn’t so sure if I even wanted to be a mom.  (The physical act of giving birth really freaked me out.  Guess I got out of that by having one emergent and one planned c-section.) I actually didn’t really consider having kids until I met my husband, Jeff.  Even then, we waited almost 4 years after getting married to start our family, when I was 33 years old.  I had spent most of the years after high school working on graduating from 3 different colleges/universities, hoping to find the right career and not really thinking about having a family.  After graduating from the 3rd university with my degree in library science, I was pretty sure I had found the right career for me.  I do love being a school librarian.  However, a small part of me still felt like there was "something else I was supposed to be doing."  During this time, I also followed a band* all over the place and saw at least 40+ concerts.  I was young, unmarried and having a lot of fun.  I met some really cool people (some even famous) and even thought for a moment that maybe that environment was where I was meant to be…goofy, I know, but I just knew there was "something else I was supposed to be doing."  It wasn’t until almost 4 years ago that I realized that the “something else I was supposed to be doing” was actually the one thing I didn’t give much thought to…being a mom.  So even though when I told Jack that it was Mother’s Day and he said, “I think it’s daddy’s day!”…I still want to thank him for making me a mommy.  It’s been the hardest and most unexpected job I’ve ever had, but he (and now Harper), make it all worth it!  And now I know, there's nothing else I'd rather be doing!

Holding Jack for the first time.  He was almost 3 weeks old.

My first Mother's Day with Super Jack.

From my 2nd Mother's Day photo shoot.

Jack and Mommy at his 2 year photo shoot.

Jack and Mommy at his 3 year photo shoot.   

My 4th Mother's Day!          

*For those of you who don’t know me well, the band is Hall & Oates!  Just had to post this flashback photo!

Sunday, May 4, 2014


adjective, pro·found·er, pro·found·est.
1. penetrating or entering deeply into subjects of thought or knowledge; having deep insight or understanding: a profound thinker.
2. originating in or penetrating to the depths of one's being; profound grief.
3. being or going far beneath what is superficial, external, or obvious: profound insight.
4. of deep meaning; of great and broadly inclusive significance: a profound book.
5. pervasive or intense; thorough; complete: a profound silence.

As you all know, I have a lot to say about prematurity.  But every year, I get hung up on this day…Parents of Preemies Day.   I think it’s the semantics of it all…are we celebrating that we are proud of our preemies or proud of ourselves as parents of preemies or both?  I mean, I’m always proud of Jack and how he has survived and handled all that has been thrown his way because of his premature birth.  But, as I’ve said many times, I struggle because I don’t always feel “proud” of my role in Jack’s prematurity.  Not for any reason relating to him but because I will forever and always feel guilty about his early birth.  I shouldn’t, but I will.  The guilt has lessened some, but I don’t think it will every go away completely (From Guilty to Grateful).  Like I said, I think it’s the semantics…the word proud.  I definitely feel that preemie parents deserve a special day, that is for sure!  In fact, I think parents of preemies deserve a special cruise!  Or a special all-inclusive vacation!  Anyway, it’s obviously a personal issue of mine; I’m super proud of all the parents of preemies that I know.   (I wrote to/about them last year:  Dear Preemie Parents)
So as I pushed the elevator button for the dreaded 7th floor to go back to the NICU where Jack spent his first months of life (to help celebrate and support new preemie/NICU parents), I was wracking my brain for something to write about today.  For as much as I struggle with the day, I can’t let it pass by without writing something (or posting a Parents of Preemies Day button to my FB wall).  I didn’t think I would write about being proud (of myself), but a comment that was left on my blog got me thinking.  She wrote:  

“I don't know how a person can ever "catch up" to such a scary, uncontrolled, profound experience. As gorgeous as that little face is, it's not separate from the experience of his birth, I imagine, a blessing and a nightmare all at the same time. But, oh, that sweet boy and beautiful family that came out of that that, you are so lucky, no matter what package it came in. I felt like your header told an entire story before I even read your post! Thank you so much for sharing!!” Brie Latini (from

I have never actually met Brie, but she said something that caused me to think a little differently about being proud of myself.  That word, profound, is probably the best word I’ve ever heard used to describe my experience as a parent of a preemie.  I’ve used words like traumatizing and miracle and sad and overjoyed and life-changing and life-threatening.  But, Brie, she picked the word that I think I will forever use to describe this journey in one word (if I’m ever asked to do so).  A few years ago, profound may not have been the word.  But it is now.  And experiencing something so profound and now consciously living my life based on this profound experience has made me proud.  I know I am not the same person I was before Jack was born.  Some might not like the new me, but I do.  Some might think that allowing something as profound as prematurity to impact the rest of my life is somehow wrong or inappropriate.  I wholeheartedly disagree.  Parenting a preemie has allowed me to let go of a lot of expectations about what life is supposed to be like and has provided me the opportunity to respond to people in a different way than I ever thought I would, especially others experiencing their own profound events.  So many don’t know the right thing to say or do when the profound happens (particularly if the profound is traumatic in nature).  Many mean well, but don’t get it quite right.  (I'm sure we've all read those "What not to say to preemie parents" posts.  One of my favorites is by Jessi, at Life with Jack.)  Profound, traumatic events make so many uncomfortable, that they will say or do things to make themselves feel better and in turn, make the person in need of support feel worse.  I know I was probably guilty of this more than once.  But, because of my own profound experience, I’ve learned to be ever mindful of what I say and do, particularly to parents walking along paths similar to my own journey.  Do I always get it right? Of course not.  Even today, at our Parents of Preemies/NICU Parents day event, a family arrived and my first reaction was to say, “Hello!  How are you?”  and I immediately knew that was not exactly the right question to ask a family of a 5-day old 27-weeker.  So I made sure to be more deliberate and mindful as I offered my support and asked if there was anything I could do to help.  I remember being in that same position…but I don’t know if I can even now articulate what would be the best or right thing to say.  But I do know, that listening and supporting (not downplaying or comparing, two things that always made me feel worse instead of better) are two “methods” that I am proud to be working on in order to be there for the newest members of our club (that no one ever asks to join).   You can read more about this club at My Little Virginia.   
This is my friend Sara's little girl, Aubree!

Tuesday, April 8, 2014

Jack Ryan's Journey - My Messy Beautiful


For the longest time, I’ve wanted to reveal my “why?” for blogging.  The Messy, Beautiful Warriors Project has given me that opportunity today. 

I never thought much about what pregnancy and child birth would be like.  I didn’t have to, because our culture, our society has already given us so many favorable expectations and so many beautiful birth stories.  We’ve all seen the amazing images of mother and child, holding each other for the first time.  And we’ve all heard that the day of a child’s birth was “The best day of my life.” But what do you do when that moment is actually one of the worst moments of your life? And not just the worst, but the most traumatic.  The most heartbreaking.  The most unexpected.   

This will never be a distant memory:  Jack Ryan, born at 28 weeks, weighing 2lb 1oz

Well, you start by beating yourself up about it.  Obviously there is something wrong with me.  Blaming yourself.  Feeling isolated and alone.  Feeling wounded.  Overwhelmed by guilt.  It’s hard not to feel that way, when instead of cuddling your newborn at home, you’re watching him fight for each breath inside a large plastic box.  It’s hard not to feel that way, when you tell someone that he was born early because you had preeclampsia and they say, “Oh, so there was nothing wrong with him then.”  Obviously implying that it was your fault.  When you are at home and you hear a newborn crying all.the.time even though your tiny 2 pound baby can’t cry because a tube is down his throat and he’s miles away in a hospital instead of at home.   Yeah, it’s hard not to feel wrong, like a failure at times like that.  Or when you instead of giving your baby a bottle or breast for nourishment, you spend Friday mornings placing a long plastic tube down their nose into their stomach so they can eat (and hoping that placement is not in the lungs which could be life-threatening).  TGIF…I don’t think so.   Broken.  Wounded.  Isolated.  Guilty.  All of these.  And more.   

What do you do?  You smile and nod when everyone says, “What a miracle.”  Meanwhile, you neglect to tell them that today your little boy turned blue while you were holding him and had to be ripped from your arms and resuscitated.  You say how grateful you are for him to be in the care of such wonderful nurses and doctors.  Yet you can’t make it past the grocery store parking lot by the hospital without having to stop your car and cry in desperation at having to leave your child with strangers.  Again.  And for the next 112 days of his life.  Or you tell everyone how wonderful it was to finally hold  your little boy, 12 days after he was born.  When what really happened is you that you were numb  inside and more than anxious to put him back in his safe isolette, afraid that he might break and absolutely afraid to love him.  And you continue to feel alone.  Isolated.  Heartbroken.  Guilty.  Wounded.

That’s what I did until I couldn’t do it anymore.  When I finally stopped feeding into the miracle.  To the expectations that are too often perpetuated about preemies and prematurity.  How they are just tiny babies who need to gain weight.  How they will catch up by age 2.  How it will all be just a distant memory a year from now.  I started talking about underdeveloped lungs and brains.  I got real about making life-altering decisions and giving drugs to a 2-pound baby that will save his life but possibly have a negative impact on his future.  I wrote about feeding struggles and lack of hunger cues and shot down the “he’ll eat when he’s hungry” advice.  I wrote about falling apart a year after everything fell apart the first time.  How it’s not a distant memory and may never be.  I shared that my preemie, my Jack Ryan, didn’t catch up by age two and neither did his parents.  And then, only then, did I start to feel less isolated.  Less alone.  Less guilty.  Less wounded.  Sharing our story – the real story – made our life less painful.   It’s still more messy, than miracle.  But it’s a lot less broken and a lot more beautiful.