Posts of 2012 Every Preemie Parent Should Read

It seemed 2012 was a year of solidarity within the Preemie social media community.  Life after NICU and Papas of Preemies launched late in 2011 and early in 2012, several private Facebook groups started, there was the first Parents of Preemie Day in the spring and the first annual World Prematurity Day was in November 2011 and grew exponentially in 2012.

Having the support of a community has been a key element to getting through life with a preemie – especially during cold and flu season lock down.  Here is a collection of some of the 2012 posts from around the community that I’d recommend to any preemie parent or friend/family of a preemie family.

Posts to read when you are a new preemie parent:

Dear New NICU Mom by Lindsay Franks for Life with Jack

Dear New Preemie Parent by Tatum Marinkovich for Ain’t No Roller Coaster

A Letter to Me by Joel Brens for Papas of Preemies

Posts to read when you need to hear someone say the right thing:

How to Talk to a SN Parent by Marty Barnes for Papas of Preemies

What to Say (when a parent loses a child) by Jana Kimmel for Keeping up with the Kimmels

Post to read when you need a reality check:

Catch up by 2? by Jessi Bennion for Life with Jack

Post to read when words hurt:

The R Word by Amanda Knickerbocker for Understanding Prematurity

Post to read when there is an older sibling:

The Therapy Fund Vol. 6 by Melissa Harris for The Tales of the Anti-Preemie

“I am Preemie Parent, hear me roar” post:

“Get over it,” “Just Fine,” “Normal” by Tatum Marinkovich for Ain’t No Roller Coaster

Post to read over and over and over again:

1st Corinthians for Moms written by Katie Loveland for Life with Jack

What preemie posts helped you most in 2012?

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editors note:  I had mistakenly used the wrong last name for Melissa from Tales of the Anti-Preemie.  The post has been corrected to reflect her correct last name.  My sincerest apologies Melissa!  

“Get over it”, “Just Fine”, “Normal”

I recently saw an exchange on Facebook where a preemie mom was posting facts about prematurity in support of Prematurity Awareness Month.  This particular post was around the cost of healthcare for premature children and then at the end, she posted how much money her own daughter’s medical costs have been so far.  Someone responded, “Money is nothing, be happy she’s alive”.

I have to give the original poster credit.  She nicely replied that she is, of course, happy her daughter is alive but she also felt it was important to bring awareness to the magnitude of the problem that prematurity is for all of us.  The response back was something like, “I was just trying to point out the positive :-)”

It wasn’t my post to comment on and I don’t know the circumstances of the commenter or the relationship between the two women, so I stayed quiet.  Maybe it was the, seemingly, passive aggressive use of the :-), but that comment made my blood boil.

In this blog space of mine, I do want to address my interpretation of that exchange because I think many of us preemie families have the perception that the rest of the world just wants us to “get over it”.  Once the baby is out of the hospital, and everything is “just fine” the family and the world is supposed to move on and be “normal” again.

This vent/response is for the moms and dads that are hurt every time someone makes them feel that way.

No, I’m not over “it” and here’s why;  “IT” is not over!  My days revolve around “it”.  Between tube feedings and oral feedings, I work with my son on feeding for 4-5 hours a day.   When I’m not working on feeding, I’m scheduling appointments… pulmonary, nephrology, genetics, ophthalmology, audiology, physical therapy, occupational therapy, neonatology, allergist, pediatrician and soon, we’ll be adding in speech therapy.

 

Every cold and every sniffle sends me into anxiety.  I instantly start thinking about what plans I am going to have to cancel and what is going to be impacted if we go back into the hospital.  And by hospital, I often mean the Pediatric Intensive Care Unit.  Nineteen months later and I still worry if he is going to be able to breathe on his own when he’s sick.  Nineteen months later and I’m still lugging around oxygen tanks and monitors and tripping over cords because he needs breathing support.

 

Yes, he is alive and I am so thankful for that.  However, I’m not sure which parts of “Medically Fragile” and “Failure to Thrive” fall into the “just fine” category.  The fact is Owen is better than he was and, in many ways, exceeding expectations, but there is a long way to go to get to “just fine”.

 

And then there is the most hated word of all.  “Normal”.  I’m not 100% sure what “normal” means, but I do know Owen’s course isn’t it.  He’s not had a typical course and so far, his outcomes are not that of a typical child his age.  He is different and it’s my job to prepare him to navigate these differences.

 

So far, I really think most people understand the Owen piece. However, what onlookers have a harder time understanding is why the rest of us aren’t our “normal” selves anymore.  Let me just put it out there really, really simply.  I will NEVER be the same person I was before Owen was born.  95% of the ways that I have changed are for the better.  I’m a more balanced, empathetic, appreciative and kind person.  The other 5% are the memories of fear, helplessness and devastation of spending 181 days in a place where babies – very real babies, not just babies I’ve read about in the newspaper, friends’ babies and nearly my baby – die.  You see, in my old “normal” world, babies didn’t die.  In my new world, I think about those that were lost every day.  I’m no longer naive to the true pain that is in the world.  I’ve felt it and the scars still ache.  I’m prepared for them to always ache.

 

So yes, I have changed and I am moving forward from where I was, but I will not forget.  I won’t forget for myself, or my family, because with the pain, came so many wonderful things.  I also won’t forget because there are new families going through it today and more families will go through it tomorrow.  When it seems like I’m dwelling on the negative, please keep in mind that it’s not about being negative and not being able to move forward.  Prematurity awareness is about reality.  It’s the reality for 12% of births!  Sharing knowledge is not being negative.  It’s about wanting to do something – anything – to help others never have to feel it.

Ahh, that felt good to get off my chest.  What do you have to get off your chest today?

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The Preemie Parent Curse: The Known Unknowns

The question that many preemie parents hate most, is the question those same parents are always asking doctors; “But, he’s going to be alright, right?”

In reality, no parent knows how their child will turn out.  Many seemingly “typical” babies go on to have special needs like Cerebral Palsy, Mental Retardation, Learning Disabilities, Autism, ADD/ADHD, Obesity, Hearing or Vision loss and on and on.  “Typical” babies, as we all know, can also die from many causes.  There are no guarantees, regardless of the heath or gestation your child was born.  However, the difference between being the parent of a “typical” baby and a preemie, especially the extreme and micro preemies, is your chance of any or many of these issues effecting your baby are significantly increased.  Even with both of my boys being premature, with Kellen, I’ve always assumed he’d do what most kids do.  With Owen, there are no assumptions.

It was last May at Kellen’s end of school year party that these unknowns hit me hardest.  I saw a video of all the fun things the toddlers did over the year – dancing, painting, singing and having so much fun with friends.  What should have been a really special moment celebrating Kellen and his school friends had me in tears as I watched.  All I could think was, “please God, let Owen have these same opportunities.  What if he doesn’t get this too?”  As the parents around me slipped small tears of, presumed, happiness.  I silently sobbed.

I’ve since been coming to terms with the unknowns with Owen, but it’s something I work on every day.  I focus on what he CAN do.  I take pleasure in seeing doctors surprised at how good he looks and I take comfort in his easy smile and diligent work ethic.  I control what I can – my staying at home with Owen and our still sending Kellen to school is partly because we want to give Owen the one-on-one time that will help him in his development.  There is proven data that children with PVL (the name of his brain damage) who are higher in birth order do better than those later in birth order. I ask questions, I study what PT/OT and Speech are doing with him.  I push for new/better/more frequent help when I think it’s needed.  I push Owen, but also encourage and celebrate each step he makes.  I’m sure I make mistakes, but I work hard at being Owen’s best advocate.

Even with that said, staying positive is something I have to continue to work on because the risks are very real for babies like Owen.  When they are born, It starts with, “will my baby live?” and each day you get further away from birth you get more and more confident that your baby will be one of the lucky ones.  But I also know that any day can be a PICU day.

Shortly behind living are all the short and long-term special needs these children face.  Here are my really honest answers to many questions I get, and ask myself, about Owen.

  • What do the doctors say about his development?  – They say he’s behind
  • Will he walk? – I don’t know.
  • Will he run? – I don’t know.
  • Will he walk funny? – I don’t know.
  • Will he hear? – He does now, it’s checked frequently.  CMV hearing loss is progressive (gets worse over time).
  • Will he see?  – He does, but I still think he’ll need glasses for eyes crossing
  • Will he outgrow his asthma? – I don’t know, he has family history on top of personal history.  He may have been asthmatic even if he hadn’t been born early.
  • Will he outgrow his tracheomalacia?  – I don’t know.
  • Will he always need oxygen? – I doubt it.
  • Will he outgrow his allergies? – I don’t know, probably not all of them
  • Will he always need his g-tube? – I don’t know, I suspect not
  • Will he talk? – I don’t know.  He’s finally started coo’ing, I’m getting more hopeful
  • Will he always have a raspy/quiet voice? – I don’t know, probably
  • Will he always have that big bruise on his wrist?  I don’t know, it may get lighter
  • Will he have a normal IQ? – I don’t know, he’s tracking better cognitively than other areas
  • Will he have learning disabilities? – I don’t know, on top of the preemie risks, they run in my family
  • Will he have behavior problems? – I don’t know, they seem to exist in most families
  • Will he be autistic?  – I don’t know, preemies are 5 times more likely
  • Will he have a sensory disorder?  I don’t know, he’s easily overstimulated but not as extreme as what I’ve heard of with other kids.
  • Will his teeth come in fluorescent green? – Oh man, I hope not.  It’s a risk with heavily medicated neonates.  Especially those who had extreme jaundice like Owen.
  • He has brain damage, what does that mean? – It means parts of his brain don’t work.  He may or may not be able to compensate with the other parts of the brain, it’s too soon to tell.  The damage is in an area that many pathways come together so we don’t know what type of skills it may affect.
  • Will he be alright? – I don’t know your definition of alright, but we are working to give him his best chances to be the best Owen he can be.
  • When will you know?  – On most things, by the time he’s 3-5, some things are closer to 10.  Then again, I’m 35 and sometimes still wonder if I will turn out all right.  It’s an ever evolving question, no?
I’m sure I missed several, but I’ve already belabored the point.  There is so much that we don’t know.  And these aren’t just will he be a Doctor, Artist or Police Officer.  Many of these questions are fundamental skills that will impact Owen in every aspect of his life.

I remember being really frustrated with the doctors when they gave me similar answers to the above.  No empathy, direct and matter of fact (take away the calculus and cadavers and I’d have made an excellent doctor).  But I’m slowly starting to get it.  First, it’s impossible to know.  More importantly, questioning his potential does nothing for Owen.  It’s about giving him the opportunity to shine.  It’s not about being jealous of the kids that can or the parents that don’t have these worries.  It’s about taking a lesson from Owen;  Smile frequently.  Work hard.  Breathe.  With that combination, you can accomplish just about anything.