Lilypie Premature Baby tickers

Lilypie Premature Baby tickers

Monday, November 17, 2014





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.   

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


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  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.  

Monday, August 11, 2014

From Birth Day to 4th Birthday

During the four days leading up to Jack's 4th birthday, I made an attempt to summarize what our journey has been like the past 4 years through Facebook.  Something about the number four is significant for me.  I think it's because Jack's birth story lasted 4 days (from the Saturday I was admitted to the Tuesday night that he was born).  While his birth day was one of devastation, his birthday will always be one of celebration.  In your spare time, please read our story:

Birth Day - August 10, 2010

August 7, 2014:
Four years ago, on August 7, I called my OB's office early in the AM to ask about the headache I had suffered from for over a week. I asked to be seen and she offered me an appointment on Monday (it was Saturday morning). Could I take more Tylenol than suggested? Read the directions on the bottle, she said. About 8 hours later, with a headache, nausea, and chills...I called the office again and got the doctor on call. She asked me to check my BP, but I insisted I was coming to the hospital. My BP was 211/115 or so and I mentioned that something was wrong with their BP machine. "No, honey, there's something wrong with you." We immediately chose a name and I was transferred the next day to a hospital that could care for such an early baby. At the new hospital, they spoke of bedrest (in the hospital) until I hit 35 weeks or so. I was given "the mag" to stop seizures and possible stroke and to protect Jack's still-developing brain. I was also given steroids to help speed up his lung development. Then suddenly, the conversation shifted and there was discussion about not being able to save both our lives. The drugs to keep my BP at safe levels were not working. My life was in danger. (I'm sure there is more to this story, but "the mag" keeps the patient pretty "out of it" and also causes memory loss.) I knew I didn't want to die, but I was so, so unaware of how precarious life would be for Jack on the outside. Had I known, I'd like to think I would have fought against the emergency c-section (probably to no avail). I was awfully calm, a nurse noted. I didn't know any other way to be. Not long after, Jack was born (weighing 2lbs 1oz) and ready to fight for his life. The surgeons said, "Hi Jack!" (so glad we chose a name) as he cried quietly. I didn't see him until over 24 hours later. What a journey it has been!

First Birthday - August 10, 2011
August 8, 2014
(Fine print:  I apologize for any confusion yesterday.  Jack’s birthday is on August 10th, but I feel like his birth story starts on the day I entered the hospital and we named him).  We abruptly stopped our normal lives and entered the world of the NICU.  We discovered that Jack was very sick and smaller than a typical 28 weeker.  He (and we) would spend four months in the NICU, slowly becoming strong enough to come home, but not exactly what one would call healthy.  Once home, we would survived from one tube feeding to the next, hoping beyond hope that someday our boy would eat on his own and breathe without support.  It was a blur of inserting NG tubes, giving medications, preparing special formula, fighting with insurance companies, therapy sessions, RSV injections, and specialist appointments.  All with the happiest boy in the world.  Despite his rough beginning, Jack’s personality was more than smiley!  Once he was finally relieved of all his tethers, tape and tubes (at about 10 months), we started to see him hit some typical milestones…sitting up on his own and crawling at his 12-month doctor’s appointments. As he turned one, I slowly stopped holding my breath, realizing that he just might survive.  He was growing stronger every day.  At a time when I thought I would also start feeling more like myself, I instead started to relive the NICU nightmare, become very irritable and crying for what seemed like no reason.   While he was in the NICU, I wrote almost daily about his days.  As I relived those days a year later, I realized that what I wrote was not exactly what occurred…I was protecting myself (and others) from the trauma of the NICU and the war that is too often waged by 2-pound soldiers.  PTSD…it’s not just for vets.  I learned from other NICU moms that it’s only natural that surviving year one would now allow time for processing what really happened.  Both Jack and I had faced death and we survived.  That’s when I felt the need to start blogging about what prematurity and the NICU life (and after) is really like.  So while Jack was happily on his way to healing, my healing (both physical and mental) was just beginning.   

Second Birthday - August 10, 2012

August 9, 2014:

As Jack turned one, I still bought into the hype that preemies typically catch up at age 2. He started walking at 18 months and running shortly after. He loved to play at home with his toys and books and watch Mickey Mouse. He was happy all the time; except when we went to his many, many appointments. He received, for the 2nd year, Synagis injection that helped his body create antibodies that he didn’t have from being from early. A common cold for you (RSV), could have put Jack back in the hospital or worse. We kept him healthy, giving his little lungs time for growth. He might have missed some family events and trips to the grocery store, but he didn’t know it and kept smiling! He was signing, but not saying much. As he approached two, we realized that “catching up” was going to be later for him and increased his therapies to three each week: Occupational (which he was receiving since 6 months old), Physical (started at 12 months), and Speech (at 18 months). They were fun “play” times for him, with one-on-one attention from great therapists who became like family to us (especially during “lockdown”).  Finally, the summer before Jack’s 2nd birthday, we gradually “let go” of the fear of RSV and other illness and spent an awesome time doing all kinds of things together. The beach. Restaurants. Amusement parks. Family events. Playing with cousins. Disney World. And Jack’s first real illness (of many to come)…a cold that turned into an ear infection and pneumonia within days. Discovered he still had atelectisis (a complete or partial collapse of a lung or lobe of a lung) despite the two years of growth. We also mixed in a possible seizure, a trip to the ER and an EEG.
Third Birthday - August 10, 2013

The years between ages 1-3 are a blur…the days were long, but the years seemed to fly by. I took another year of leave from my job and eventually resigned to become an official stay-at-home-mom (SAHM). And boy did we stay at home. Preemie parents call it “lockdown” since many of our little ones suffer from Chronic Lung Disease (CLD). We knew the first 2 years were critical for Jack’s lung health, but it wasn’t easy staying home so often or missing so much time with our family and friends. While I wasn’t the mom I thought I’d be, I’d like to think I was exactly the mom that Jack needed. I wasn’t just a SAHM…I was a therapist…I was a nurse…I was a nutritionist…Iwas an advocate for my child. I mixed playtime with therapy goals and administered meds while we watched Mickey Mouse. I added heavy cream and butter to as many meals as I could and encouraged Jack to eat his mac & cheese before his peas…hoping that just once, we would see a doctor or specialist and they’d have something positive to say about his weight. I blogged and I shared our story. I joined the Family Advisory Council to help other families at Penn State Hershey Children’s Hospital. And I so desperately wanted, no, needed everyone to understand what we had been through. I spoke with a therapist who compared my concerns about Jack’s health and delays to parents who were disappointed that their son didn’t play the piano as well as they’d like. (The opposite of understanding or “getting it.”) I moved on. I found fellow preemie moms support group and I got more “therapy” in that one meeting than I ever did with my real therapy sessions.

Fourth Birthday - August 10, 2014
August 10, 2014:
Can he really be 4?  Has it really been 4 years since that traumatic day?  Are we really four years into this journey?  Some preemie parents in the NICU envision the future.  I couldn’t see past the day-to-day and still often don’t.  So Jack being 4 is such an awesome surprise to me.  He’s feisty and funny, silly and sassy, lovable and LOVED.  In this fourth year, he started preschool…loved it…and made so much progress in socialization, speech, and in his fine-motor & gross motor skills.  He became a big brother.  He is STILL obsessed with all kinds of transportation and can now identify the makes of most cars.  He even knows the difference between Honda and Hyundai.    Of course, he also can identify the alphabet and numbers and colors and shapes!  The conversations we have with this kid are amazing!  And each day he comes up with more and more to say.  He has imaginary “signs” that spell out what he wants “right now” and “every day.”  He’ll say, “My sign says I can stay up all night.”  Or, “The sign says to go outside.”    He loves to be a “Yard Crasher” with daddy and do BIG JOBS with him.  Right now he’s outside building something from Lowe’s.  He’s always ready to get his tools or go on an adventure with mom.  He wakes up most days asking, “Where are we going today?  Who is coming today?”    Basically, he’s HAPPY!  And he is Jack-HEALTHY, meaning he still has CLD, which is treated with daily inhalers and extra meds when sick.  A cold might last a little longer than typical for others, but he handles it just fine.  And he still needs some extra support for his fine & gross-motor delays.  But, during his most recent IEP (Individualized Education Plan), he was able to be discharged from Speech Therapy and decreased the number of Occupational Therapy session to every other week!  Physical Therapy will still be every week and he’ll be attending pre-school 3 days/week this year too. 
As for me, there are days where I have constant conversations in my head, about prematurity awareness and understanding and educating, and I still desperately want to make things better for new families affected by prematurity.  So I am now co-chair of the newly formed (Jan 2014) NICU Advisory Council at PSHCH and a board member of The Foundation for Prematurity.  And then there are days when I want to just let it all go and pretend it never happened and isn’t still affecting our lives (as if).  For it is still affecting our lives and may always do so, but the impact seems just a little less each year and for that I am grateful.  I’ve learned so much from Jack and from this journey.  I’ve learned to let go of expectations.  I’ve learned to be more compassionate.  I’ve become more decisive (when it matters) and more aggressive (when it is necessary).  All because and all for Jack and now Harper!  I’ve learned that parenting is hard, not matter how early or on-time your baby arrives.  For me, parenting a preemie has been different and more extreme than parenting a full-term (or close to it) babe.  But the love for them is the same.  And it is a big, big love.   HUGE.  And I’ve learned that all I want for both of them (no matter when they were born) and for myself is to be HAPPY and have a LIFE THAT’s GOOD!