Flashback Friday: "Today"

 

Here's Jack about 2 years ago (January 2011).  He was a little over 5 months old, still had the NG tube and was on 24-hour O2 support for his chronic lung disease, along with multiple meds.  At this point, Jack had been home from the NICU about 6 weeks and we were so grateful to be at home with our sweet little boy after 4 months in the hospital. But, we were also in the awful, disheartening stage of living with medical equipment, doctors appointments, medications, breathing treatments, feeding pumps, and that outright fear that our little guy might not ever eat normally or breathe without support from a machine or tank.  We worried if he would sit up, then crawl, then walk.  Would he say "I love you, Mommy"?  Would he get sick and end up back in the hospital?  In those days, those never ending days, I struggled to see past all that to ever imagine the possibility of who Jack is today.  And, if I'm being real, there were definitely moments when I missed a lot of who Jack was then, because I couldn't see past the prematurity, the lung disease, the fear, the uncertainty. 

Today...he ate cheerios and milk for breakfast and noodles and hot dogs for lunch.  He ran around, played with play-doh, and even threw a little fit about what to wear.  He made the choice to skip his snack by telling me "no, no."  He removed his clothes and diaper all on his own, while I was on an important conference call.  Apparently, he had the urge to pee and did so on the floor :)  He wore his first pair of big boy underwear.  Yet, he was also okay with returning to a diaper for naptime.  Or, in our house, it's "time in the crib where I say all the words I know...over...and over...." and eventually he fell asleep!  He will most likely wake up to play some more and say "Mommy...Daddy's Home.  Hi Daddy!" around 6.  He'll have pizza for dinner, chatting all the while.  More playing and snuggling before bed.  No, I couldn't see "this" back "then," but I sure am blessed to be living it....today.  (And everyday.)

I had been wondering if all the prematurity entails...does it ever end?  Will I ever stop worrying about how prematurity affects Jack's life?  Twenty nine months into this journey, I'm learning that while its likely that prematurity (and all that it entails) will continue to be part of our lives, the focus is slowly shifting to our daily lives.  The focus is...today.  

A Year in Pictures 2012

As I sifted through a year's worth of Jack photos, I realized that 2012 was the year without medical equipment...no NG tube, no O2 tanks or concentrator...and after winter, the year of freedom from RSV isolation!    Jack was finally untethered...and it shows!  Some of the things Jack (and we) experienced this year, I never could have imagined as we sat in the NICU for 112 days, willing him to survive and thrive.  During those days, our focus was on survival and I rarely let myself wonder what the future would be like for Jack.  Even after Jack came home, still with multiple meds, appointments, therapies, O2 and a feeding tube, it was very difficult to see past all that to a future of typical, fun toddlerhood.  Little did I know!   However, as I've discovered from looking at Jack's 2012 photos, his present and future are simply spectacular. 

January - Standing on my own!

February - Bathtime in the big tub. 

March - Mayor of Willow Lane

April - The Great Easter Egg Extravaganza

May - The first of many playdates with the cousins.

June - 2nd trip to the OBX.  

July - A day at Dutch Wonderland.

August - Two pounds to two years!  Happy Birthday Jack Ryan!

September - BOAT!

October - Ginger SNAP

November - From NG tube to PIZZA

December - the REAL Elf on the Shelf

Happy New Year!  We hope that your 2012 was as blessed as ours and your 2013 is even better.  I can't wait to see what's ahead for Jack this year.    

Day at Magic Kingdom

Jack was in awe at the Magic Kingdom today.  He road a bus, the train, met Minnie & Daisy, rode a flying elephant, met Tigger & Pooh, watched Mickey's PhilharMagic and rode the "It's a Small World" boats. 

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 (nevertoosmall.org) or like us on Facebook https://www.facebook.com/TheFoundationForPrematurity.   

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):

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:  heatherjefflesoine.shutterfly.com

Jack is TWO!

There are so many thoughts and things to say about Jack turning TWO!  I'm working on organizing those thoughts, but for now, enjoy this video of Jack's life the past 2 years:  (Click on the words, "2 pounds to 2 years").

2 pounds to 2 years

Happy 2nd Birthday, Jack Ryan!

After Jack's 1st Birthday: Our Preemie Story

 (Note of caution:  I was definitely in a dark place emotionally after Jack's 1st Birthday, so this may seem a little raw and/or bitter.  That's okay...because that's exactly how I felt then.  I can say, however, that those feelings of rawness & bitterness are much less common in my heart these days as we approach Jack's 2nd birthday

 Thanks to Keeping Up With the Kimmels for allowing us to share our story:
 http://www.kimmeldoubletrouble.blogspot.com

       

          Telling our preemie story is difficult; it’s not a story.  It’s our life.  We are still in the middle of our preemie story and I often wonder if we’ll ever see the “end.”  But I do know that I still often feel like our little guy is “on loan” to us and if we can just keep him healthy for the next year or so, then we get to keep him.  I know this sounds absolutely ridiculous to most parents…unless you are part of the club that no one really wants to join. 

          We celebrated Jack’s first birthday (9 months adjusted – preemie moms, you know why we write this clarification) just a few weeks ago, and one of our favorite NICU nurses was there to celebrate with us.  We were talking about the good old NICU days (read this in a sarcastic tone please) and I mentioned to her for only the second time to anyone that I thought every day that he would die.  She looked at me with such shock and awe…why would I think that?  Sorry, what else am I supposed to think when he was born and I didn’t see him for over 24 hours (not even a glimpse after my emergency c-section) and since that day he was not breathing on his own?  Or maybe it was the day of my discharge when I watched the respiratory therapist “bag” our little one as doctors and nurses hovered around his isolette.  Or, I don’t know, maybe it was the day that I was casually kangarooing and one of our other favorite nurses hastily ripped him out of my arms…at that point I must have blocked out the alarms, because I didn’t realize that he was turning blue and, yet again, not breathing.  Thus is the life of a preemie mom in the NICU.  It is not normal and it will never be.  I have an aunt who works in the medical field (pediatrics) and she was so very helpful during this time if I had medical questions.  But she always said that in 6 months, this NICU experience will be a distant memory.  As if.  It has been over a year since Jack was born and I cannot look at him without what seems like all of the 112 days of his NICU stay flashing through my mind.  It is a kind of trauma that will never be forgotten.  I used to get hurt/upset/angry/bitter at people and their comments…Oh, he doesn’t look like a preemie anymore?  Yeah, well that’s because you can’t see his lungs!  Why do those doctors care so much about his weight?  He’ll eat when he’s hungry.  Again, those doctors know what his lungs look like and are concerned for his health.  Yeah, I cringed at those comments and many more.  But I know now that everyone was just trying to be helpful and make us feel better (even though, at times, some comments had the opposite effect).  But my goal now is to educate.  I’ll be the first to admit that I knew nothing about prematurity or infants who are sick at birth.  I assumed preemies were smaller and just needed to gain weight.  So when people comment, I assume that they are just lucky enough to not have experienced a story like ours.  Here it is: 

          I was very cautious during our pregnancy – no hot dogs, lunch meats, caffeine, etc.  We had “help” getting pregnant and the early months were fraught with issues and anxiety.  But, by my 6^th month things calmed down.  As I just stepped foot into the third trimester, I had a headache that just would not go away.  It developed into nausea and chills by the 7^th day and I called my doctor’s office, but they could not fit me in until Monday.  I had sent my husband on his mountain trip, thinking I just had a stomach virus or something.  But later that evening, I knew I needed to head to the hospital.    Yep, my BP was sky-high (200/110 something).  I casually mentioned to the midwife that there must be something wrong with their BP cuff.  And she kindly said, “No honey, there is something wrong with you.”  Fast forward 4 days, after being transferred to a hospital with a Level 111 NICU and being bounced back & forth from labor and delivery to maternity.  When my BP would just not stabilize, it was time to deliver.  A nurse commented about how calm I was (could have been the mag), but I really didn’t have any other choice (or did I) and how was I to know that we would end up experiencing a 112 day stay in the NICU?  Knowing what I do now, I would have begged and pleaded for them to wait another day…but, I also didn’t want to die.  I was pretty well drugged before the c-section, but my stepsister recently reminded me of the conversation about possibly not being able to save both of us (me and my son).  Apparently I wanted a say in the matter…but I sure don’t remember that conversation.  I have an inkling that there are a few events and conversations that I don’t recall from the week before and weeks after Jack’s birth. 

          Jack was born on 8/10/10 at 10:12 pm at 28 5/7 weeks.  He weighed 2lbs 1oz and was 12 inches long (the size of a ruler).  I had spent the week before his birth with a headache that would not go away.  By Saturday August 7, the headache was joined by nausea and chills.  My doctor’s office was unable to see me that day so I thought I could wait until Monday.  However, by Saturday evening I had called my mom to take me to the hospital because I knew the way I was feeling was not right.  Little did I know that I would be a mother just a few days later.  My blood pressure was extremely high and there was talk of delivering immediately.  At that point, I had no idea what prematurity would be like for a baby, but I knew that I did not want to die.  I was transferred to a hospital with a level III NICU and was bounced between L&D and the maternity ward until Tuesday (depending on how high or low my BP was).  Suddenly on Tuesday evening, August 10^th,  I was told that it was time to deliver.  Because I was on magnesium sulfate, I was surprisingly calm, according to my nurses.  Of course, that is because I had no idea what was in store for my little boy.  I just knew that I wanted to feel better.  I didn’t see Jack until 24 hours later.  He was much tinier than my husband and family had described.  I just couldn’t fathom what our life would be like now. 

          Jack spent 112 days in the NICU.  So many have asked me how the experience was or how did I feel about the NICU?  I have one word:  AWFUL.  No matter how wonderful the nurses and doctors were (and they are awesome), the experience was an awful one and I never, never want to experience it again.  The emotional intensity, the fear, the uncertainty…it cannot be understood by anyone other than those who have had their own NICU experience.  And even then, no NICU experience is exactly the same.  And it sure isn’t a “rollercoaster” as so many describe it.  It was more of a nightmare.  Watching a respiratory therapist bag my son on the day I was discharged was awful.  Having Jack ripped from my arms as we “kangarooed” was awful.  But he wasn’t breathing and needed to be saved.  Leaving him every day was awful.  Wondering every day if he would die was awful.  Trying to function outside the NICU was impossible and, you got it, awful.  Trying to explain to people why he couldn’t come home was awful. And don’t get me started on still trying to explain to people why he shouldn’t be exposed to respiratory viruses.  It’s awful.  But, it has allowed me to channel my teacher energies into educating everyone and anyone about prematurity.  Jack was on the ventilator (oscillating and conventional) for 11 days and then on Si-PAP or C-PAP for almost 3 months.  His lungs were very immature and slow to grow/heal.   Apparently, he was taking the “scenic route” in the NICU, according to one of his doctors.   Steroids did help him to get onto Vapotherm and finally nasal cannula.  He was discharged 112 days after birth and sent home with O2 support and an NG tube.  Feeding was very difficult for Jack because his lungs just didn’t allow him the endurance to eat “normally.”  We spent 4 long, disheartening months working on Jack learning to take bottles.  We were so glad to bring him home, but we basically brought the NICU home with us without the support of nurses and doctors.  Because Jack came home during RSV & flu season, we rarely allowed visitors and took him to doctor appointments only.  It was awful (there’s that word again) to bring home your baby and not be able to introduce him to our close family and friends.  And, at the one time we most needed the support and help of our family, we were often too afraid to ask for help for fear of exposing him to illness.  I struggled daily, and still do, with myself.  For I never wanted to be so anxious as a mother, but I also had no other choice.  Jack needed to stay healthy so that his lungs could grow and heal.  We made it through the first RSV and flu season without illness and Jack was finally without O2 support by July 2011.  Our lives are approaching normal but it is still a long journey.  We are entering Jack’s second RSV & flu season and are so grateful that he still meets the requirements for Synagis.  We also keep O2 cylinders in our home, just in case.  I don’t know many parents that have to do that.  I keep telling myself that if we can just make it through one more winter, maybe we can relax and start living.  I still know that there are many people that question our decisions to limit his exposure…everyone seems to think that babies need to be exposed to build immunities.  I have to remind myself that these people never experienced a sick child so they will not understand that there are some babies that don’t “need” to be exposed…not yet anyway.  RSV is dangerous to all babies, but even more so to premature babies like Jack.  If Jack doesn’t go to the mall or the grocery store until he is two, but stays healthy, I think I will be alright with that! 

          So that’s the chapter we are on in our preemie story.  It isn’t “the end” but thankfully, we are no longer at the beginning.  No one expects to have a premature baby.  No one expects to have to watch their child struggle to breathe from their first breath.  It is a very traumatic experience and takes parenthood to the extreme.  I’ve always said that I feel like I’m on a new reality show, “Extreme Parenting.”  My husband and I had planned to have more children, but the thought of a second NICU experience is something that we may not be able to handle, physically and emotionally.  And we are also sure that we would not want to put another tiny baby through the trauma.