Lilypie Premature Baby tickers

Lilypie Premature Baby tickers

Thursday, November 29, 2012

Do Preemie Parents “Catch up by 2” ?

In the last 2 years, there are a few terms that I’ve learned to hate about prematurity…preemie (sounds too cute for my liking), former preemie (as if the little one can suddenly be born weeks later than he actually was), “NICU roller coaster” (let me tell you, it was no fun at all)  "catch up" ….to name a few.  If you know anything about prematurity, you have probably heard that preemies “catch up by age 2.”  Let’s just be clear that preemies don’t always “catch up” by two and really, should they be expected to?  Let’s take Jack, for example.  Born at 28 weeks, spent 112 days in the hospital, came home with O2 support and an NG tube (not to mention multiple meds)…I don’t expect a sick baby like him to suddenly catch up by 2 or by any age, for that matter.  Jack will be Jack and do whatever Jack will do when he does it.  That doesn’t mean that I don’t want him to use a spoon to eat or be able to solve Calculus proofs.  But it does mean that I’m trying my best to not to compare him to anyone but himself!  Unfortunately, babies born premature are under the microscope and we live in a society of comparison…be it medical professionals, therapists, or parents…so we are acutely aware of when he is “supposed” to do things and we are definitely taking advantage of any and all support and resources to help him do so. 

So, Jack hasn’t caught up by two…and neither have I.  I’ll admit that I would love for prematurity to no longer affect his life or mine at age 2.  But, I can say we are less focused on prematurity (as it pertains to Jack) and more focused on having fun!  (We leave for Disney World in just a few days.)  But, I do still have a folder on my laptop titled  “You Don’t Know Jack” with a file titled "Random Thoughts” that is over 18 pages long…and that’s just the stuff that I find time to type (not to mention all that floats around in my head on a daily basis).  So, yes, I still think about prematurity on a daily basis.  So it’s safe to state that I have a lot to say about prematurity.  But there are a few bloggers out there who say it even better.  I read this article the other day (A Different Journey:  Reactions to a Premature Birth) and it described almost exactly how I’ve been feeling the last two years.  Here’s a small excerpt:

"None of us will ever be the same again — but a lot of the time, we’re not so sure that anybody knows what we mean. Our journey was distinct. Our transformation took a startling path — perhaps a longer road or one with more twists and turns. We are different now. And the unease we feel, I believe, comes in part from our struggle to figure out who we are now, how we fit in to the world we used to inhabit, and how we want to move forward. […]  Some of us feel like walking wounded much of the time. Ever vigilant, we wait for the next shoe to drop, and then the next one and the next one. Others may feel more robust now, but still different than before. It’s not just because of being parents to this new baby — but because of how you got there. You have seen something profoundly different. You know things that you didn’t know before, and that many parents out there still don’t know.  […]  It’s because we love as deeply as we do that we struggle so much. We want our children to sail through. We want to spare them any suffering. We want them to have every possible chance to thrive. And as parents, we are faced with the reality that we can’t always shield our children. We cannot take over, take all control and make everything all right. It’s terrifying. And infuriating. And so terribly sad. Most parents gain this in practical experience over the course of a lifetime of parenting. Parents of preemies are in the unique position of facing this reality much, much sooner.” 
I have absolutely changed (though I fought that change for a long while).  I feel more focused, less funny, more aware, less stressed (about things other than Jack), more anxious, less judgemental, more caring, and less career-driven.  I surprised myself by not being as “lost” as I thought I would be by giving up my career.  But I gained so much (besides weight...haha), by choosing to stay home with Jack.   I feel like a better parent than the parent I thought I would be.  I never thought I would breastfeed or be a stay-at-home-mom, but I did/do both (pumping counts!).    I love the mundane things about being Jack’s mom:  buying whole milk, having a cabinet dedicated to Jack’s food, washing & folding his little clothes, reading books multiple times a day (hey, I did that before), changing diapers.  My favorite room in our house, the place where I feel most comfortable and at-ease, is Jack’s room.  I’ve come a long way from crying at the sight of his empty crib when he was in the NICU, that’s for sure.  When you have to discuss all the prematurity issues:  developmental delays, lung disease, brain bleeds, Cerebral Palsy, etc. before birth you start losing sight of the future you expected for your child.  So, seeing Jack run into the ocean or responding to a story hour prompt…always amazes me.  I will never stop being amazed.  He wasn’t just born small, he was born too soon and undeveloped…all those things can be so detrimental and affect his future.  We couldn’t say for sure if he would walk or would talk or do any of the awesome things he does today.  So forgive me if I seem too excited or too surprised as these things happen and I post about him on Facebook too often.  When the only experience you have with becoming a parent starts as traumatically as ours, and you have no other perspective to bring…well, it really affects your view.  With each new thing that Jack does (from eating 2 chicken McNuggets to singing along with his Mickey songs in the car), my unease and anxiety lessens just a little bit.  All of these things are helping me “catch up” to being a parent who is not so overwhelmed by prematurity.    
    However, when I think about moving forward, prematurity is still in the picture; what I most want to do is help other families affected by prematurity.  I’m doing that in many ways lately…by blogging about our experience so other families don’t feel so isolated and alone…creating a new NICU binder for families at Penn State Hershey Children’s Hospital (PSHCH) …answering questions in an online support group…connecting with local NICU/preemie families…co-chairing the new NICU Family Advisory Council at PSHCH.  (I may have given up one career, but I’ve obviously found myself another one!)  I’m also on the Board of Directors of a newly created organization, The Foundation for Prematurity.  So many of you have heard me express how difficult life can be after NICU discharge – therapies, doctor appointments, medications, feeding issues, anxiety, RSV, insurance woes .  The Foundation for Prematurity hopes to help families navigate life after the NICU and also provide grants to help with the financial burden as well.  Check us out at The Foundation for Prematurity ( or like us on Facebook   
There's a lot of healing that can happen, for me anyway, when helping families like ours. 
Here’s a little flashback from just 2 years ago….Jack on discharge day (11.30.10):

Tuesday, November 13, 2012

Catch Up By Two?

     I think about posting about Jack turning 2 almost daily.  But I keep putting it off.  There’s just so much to say, especially since my last real update was in June!  Good mommy, bad blogger!  Basically, since Jack has started walking, things haven’t slowed down enough for me to put my thoughts together.  While Jack was in the NICU, we heard the phrase “catch up by 2” thrown around.  Apparently, age 2 is a big deal in the preemie world…well, that is unless you’re an actual preemie parent and have already realized that there isn’t some magical process that occurs the night your baby transitions to 23 months+ to 2 years!  As if, suddenly, at age 2 the impact of prematurity is erased.  It’s not.  I’ve always hated that phrase, because it inherently implies that Jack is being compared to other babies who have had a more typical start to life and that he MUST catch up, for whatever reason.  I do not need Jack to “catch up,” but the medical community apparently does.  I think it’s safe to say that Jack isn’t completely “caught up,” but he is the best Jack that he can be, and he is…completely amazing!

So here’s a little bit of what Jack has been up to lately:

     Talking....he has definitely transitioned from signing to words (although he still uses signs every once in awhile).  His favorite words are probably “Big Truck.”  He also calls Jeff, “Big Daddy!”  And apparently I must say “Right now!” pretty often, because yesterday he brought me his shoes (or “chews” as Jack calls them) and said “Right now!”  He is still working on 2-word phrases, but the realization that he could use his voice/words definitely kicked in right after his birthday.  His receptive language skills are awesome…just when I think he isn’t listening or understanding, he proves me wrong!  Just like his body, I think his brain is going non-stop.  There are days when he will spend 2 hours shouting and talking in his crib, when he should be napping.  In addition to weekly speech therapy sessions, Jack also attends S.P.L.A.S.H. (Sound Play Language Awareness Story Hour) on Thursdays with 7 other kiddos.  It’s an awesome program for 2-3 year olds to have fun with language and sound.  He’s been making a lot of progress since we’ve started these classes.  I love hearing him shout out answers in class or sing along with the songs!    He is able to say most of the alphabet and count to 10…and recognizes many letters and numbers.  8 is one of his favorite numbers!  We are working on using words to communicate his wants and needs (rather than just labeling things). 
     At the beginning of the summer, Jack became a “Miracle Child” for the Children’s Miracle Network.  We were able to be on TV for the annual telethon and he can now participate in lots of CMN events and share his story!  We traveled to the OBX in June as well and Jack LOVED the ocean.  This boy had no fear and ran right in.  He loved being with the whole family (over 20+ people), especially his cousins Emma and Carly.  He’s been a pretty great traveler so far…no complaints in the car.  Jack has been to Dutch Wonderland a few times this summer too…loved the log flume and the water slides.  I couldn’t have ever imagined that my tiny 2-pound baby would someday love water slides!    Jack also loves going to Daniel’s Den park (for all abilities), where he can really explore and use his body/muscles in new ways.  The shorter steps have helped him step up & down on his own and he has definitely become more confident navigating unfamiliar terrain.  We are working on ball skills (throwing, passing), jumping, and walking up & down stairs (tough for his short legs) with his PT. 
     Like me, Jack celebrates his birthday week, instead of just one day (back in August).  He had 3 different birthday celebrations and enjoyed them all.  This birthday was the year of TOYS!  He received so many new toys…I’ve been rotating them so that they seem new again every few weeks :)   We also took Jack to New Hampshire to visit his grandparents.  He did awesome on the 10-hour car ride and LOVED the lake and boat rides, and he had no complaints about wearing a life vest.  He was “big man on campus” when we visited cousin Lexi at LVC.  Lots of campus to explore for Jack.  He also went back to visit for LVC Homecoming and met some of my softball teammates and coach.  
     He’s been to the grocery store and restaurants, the bay, a wedding, The Country Barn, trick-or-treating, Chocolate World and the zoo.  It’s been so nice to finally do typical things with him.  While we are still cautious about his health, we know that his lungs are much stronger now and could probably withstand a cold  or other illness, without hospitalization.   We still see his pulmonologist every 3 months and he still takes daily medications to help him breath and keep his lungs “open.”  His eating habits are typical of a toddler and he’s added a few new foods, like chicken nuggets and sweet potato fries.  Nothing makes me happier than watching him eat.  His weight is still lower than doctors would like, but he eats well.  He peed on his scale, so we don’t weigh him as much as we used to.  He also still takes daily meds for reflux and we are supposed to add a GI doctor to his “team” since the reflux should have been resolved by now.  Therapy is still the same (PT, OT, SpT), but we do have his annual IFSP meeting in December to see if he still qualifies for Early Intervention services.  Having these services is a blessing and a curse at the same time…obviously, I love that Jack has all the support he needs to be the best Jack he can be.  But, it also is a constant reminder that his early birth is still impacting him and that he needs extra help to do things that many children can just do.    
     Every year that he gets older, every milestone that he reaches…I feel a very miniscule amount of relief that we are closer to the point where I think he will have a future and survive the trauma of his early birth and undeveloped body and organs.  I hear a lot of parents lament about their little ones growing too fast, and while part of me feels that same way, there is also a part of me that is VERY anxious for him to grow up, get stronger, and get healthier.  That’s all I could think of during his baby stages when we were so overwhelmed and anxious, hoping that we would see the next day.  I’m glad that I documented all those days, so now I can look back and see all the “typical” baby stuff that he did do.  One of the effects of prematurity on parents is that we are often so focused on the medical stuff, and rightly so, that we might miss out on enjoying certain things.  I’m happy to say that I think we are at a point where the everyday toddler stuff definitely has taken over as a focus, with health/medical stuff still on the table (but maybe just as an appetizer for now). 
As I finish typing this, Jack is on the tail end of his first real cold.  I had the cold first and Jack seemed to have a lesser version of it, with mostly a stuffy/runny nose and a slight fever on the first day.  We just added his second inhaler, to make sure nothing moved to his lungs and kept an eye on his O2 saturations with our handy-dandy pulse-ox.  Jack actually enjoys this “testing” now!

So, that's the Jack portion of his turning two...stay tuned for how much Jack's mom is "caught up" by 2.  

Also, to see more pics of Jack, check out: