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?

Click Image to Pin on Pinterest

Click Image to Pin on Pinterest

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!  

Getting THE Diagnosis

THE diagnosis may have a different name depending on the person – Maybe it’s Autism, Cerebral Palsy, IVH, Spina Bifida, Down Syndrome, prematurity or some genetic disease that is only listed by the chromosome that it affects.  For the purposes of this post, the label really doesn’t matter, if your child has had THE diagnosis – you know what I mean by calling it THE diagnosis.

It is THE diagnosis that leaves you wondering what the future holds for your child.  Questions like, will he ever be self sufficient – have a job or live on his own?  Will he walk? Will he talk?  Will he be made fun of on the playground?  Will he even get to join the other kids on the playground?  I could go on and on, but I did that already in one of my first posts called, “The known unknowns“.  The point is, when your child receives THE diagnosis, you know that he or she will likely have special needs for life.

For us, THE diagnosis was Periventricular Leukomalacia (PVL).  PVL is a form of brain damage that is often associated with cerebral palsy, mental and physical delays, seizures and behavior problems.  Owen was about 2 months old when we learned that he has PVL.

One of the pieces of information I can see on this blog is what search terms bring people to ANRC.  The most common way people find this site is looking up information on PVL.  Everyday, there are more than 15 views of that post that was posted this summer.  This post, is my message to those that find ANRC because they are researching their own child’s recent diagnosis of PVL.  It’s also for any parent that’s received THE diagnosis with any other name.  It’s our story of coping with THE diagnosis.

I’d like to say I took the news well…and I guess you could say I did take it well at first.  At the hospital I steeled myself and asked questions like how significant is the damage..is it big or small (the avoidance of answering the question told me it wasn’t small), what does this mean for his future, when will we know.  I stared at the black spots (cysts; which is where portions of the brain turn to fluid and dissolve) on the ultrasound and silently my heart sank, but I didn’t show a lot of emotion in the moment.

However, as soon as I was home and alone I lay on my bedroom floor in a heap with a box of Kleenex and cried huge uncontrollable sobs and grieved the fact that Owen would not be one of the 20% of 24 week preemies that survives with no long-term issues.  I imagined all of the worst case scenarios and I cried for what the future may be for this baby who was still critically ill.  I knew I should be grateful, it was only a week or two earlier that we had feared we were imminently going to lose him, but all I could think is “IT’S NOT FAIR!  WHEN DOES HE GET TO CATCH A BREAK, WHEN DOES SOMETHING GET TO BE EASY FOR HIM?!”  I cried and cried and cried.

And then I picked myself up and have never cried about it since.  I still grieve the loss of “normal”, but just like the CurePity post last week, I already knew dwelling on those thoughts is not what Owen needed.  My motto, that I first said to Kyle and then repeated to everyone until I believed it was, “No parent knows what the future holds for their kids.  Some parents don’t learn about PVL until their child is three and not walking.  We are lucky to know now – it means Owen starts getting help now.”

Instead of dwelling on it in a negative way, I became proactive about it.  I researched the outcomes through research papers and I made sure development was considered in his care.  I shared the statistics with our family and mentally prepared for what might come.  At the same time, I really focused on what he was doing and pointed out everything I saw, good or concerning, to his team.  We work on “therapy”, which is really just purposeful playtime at least 45 minutes most days and then another few hours on eating.  Plus we have 3 therapy appointments most weeks.  When I hold Owen I think about how I’m holding him, when I hand him things I switch sides, I build his development into most activities that we do.

Some think that I am obsessed or worried because I really do notice everything, but honestly, worry is not in my mind when I’m pointing out what I see.  Pragmatic and proactive and dedicated are the words that I would use.  I want Owen to have his best chances, and I refuse to look back five years from now and wonder “What if”.  I do give him breaks.  If he’s not feeling well, I don’t push him and if he’s not having fun, I stop, but when he’s willing to play, so am I.

I’m sure my advice will evolve as we continue down this journey, but 18 months since getting THE diagnosis, here’s my advice for those that are facing their own THE diagnosis.

  • Don’t be afraid to be upset.  Cry, scream, yell, punch pillows (please, not brick walls)…whatever it is that helps you release the sadness.  Get.  It.  Out!  Acknowledging sadness and anger is healthy and to be expected.  At the same time, don’t dwell on it.  This weekend I had coffee with a mom to a 6 month old who was diagnosed with Down Syndrome shortly after his birth, she said after the doctor gave her the list of what could go wrong, she thew it away.  She knew, it couldn’t be her focus.  That doesn’t mean she didn’t get upset, she too cried and cried, but she didn’t dwell on it.
  • Instead, use that sadness and anger for good – get your child the help that he/she needs.  Don’t be afraid to be a pain asking for help, but also be willing to give just as much as you ask for.  For us, the decision for me to stay home with Owen to focus on his development was the right decision   Financially, that’s been a tough pill to swallow, but it’s what has worked for us.  Other people have other, just as effective, ways of solving the same problem.  What’s surprised me most is I’ve learned when you use anger for good, the anger seems to transform into determination.  Determination is where power comes from.
  • Celebrate every accomplishment.  I’ve learned to make the goals small enough that there are frequent successes.  Each time Owen succeeds and sees us celebrate with him, it motivates him to want to try more and it motivates me to keep working with him.  Also, celebrating is a great way to slow down and appreciate the journey that we are taking.
  • Don’t lose hope.  For me, I needed to prepare for the worst, but that never made think Owen didn’t have every possibility in front of him.  I have no idea what the future holds, but I am hopeful and I’m more than willing to let Owen keep blowing my mind with his amazingness.

I know there are many readers who are further along the path of getting THE diagnosis.  What other advice would you give to the parents who just received THE diagnosis.

Grieving my 38%

Monday, Owen and I had a coffee shop meeting with the Minnesota Chapter of the March of Dimes to discuss ways that I can help the organization advance their mission. It was a great meeting and I am excited to get more involved with the organization that works to keep all kids healthy and especially their work towards preventing prematurity. I left the meeting with a folder of some information and that afternoon, Kellen noticed a picture of a pregnant woman in it. He started asking about why she had a baby in her belly and I told him that he was in my belly when he was a tiny baby. “Do you want to see a picture of mommy when you were in her belly?” I asked. His face lit up as I showed him the pictures of me while pregnant and of him and I right after he was born. It was a sweet conversation and good bonding time.

Pregnant with Kellen, at 32 weeks. 2 weeks before he was born.

However, it was also a little bittersweet. While I was showing Kellen the pictures, I also wanted to show him a picture of me when Owen was in my belly. The problem is, I couldn’t find one. I later scoured all of our photos and couldn’t find one picture of me that showed my stomach during my pregnancy with Owen. There is not a picture of me smiling proudly with my hand on my stomach. Not one of Kyle’s hand on my belly. No pictures of Kellen lovingly kissing the baby through my tummy. Not even a random snapshot that happens to include a swelled belly in it. That realization combined with Monday being the one year anniversary of Owen’s due date gave me a twinge of sadness. It didn’t ruin my day, but I did have moments of sadness. I missed so much of my pregnancy with Owen. More than 38% of what should have been, didn’t happen.

Continue reading

Marriage and the NICU

More than alone time, more than work, more than girls nights out, more than “normalcy”, more than anything – what I missed in the first year of Owen’s life was my husband.  Continue reading

The Sickest Day

Today is the one year anniversary of the day that everything changed. It was the day that Owen’s course became “complicated” (that is the technical term, but it feels all too simple of word, if you ask me). It was the day I learned the difference between a parent fearing for your child and the doctors fearing for your child. It was the day I took a ½ hour break from Owen’s bedside to go to our room and plead with God to not take my son. I have never felt so vulnerable.

I think this picture of Owen and I on May 24, 2011 says enough; for I have yet to find words to explain the myriad of emotions I have about that day and those that followed. I had forgotten that there were pictures taken. I had deleted them from my cell phone because I hated the reminders. But recently, I found that I had put them on Snapfish and I was really proud of the woman I saw in this picture. I started a ritual on that sickest day of Owen’s, and I’m guessing that I’m doing it when this photo was taken. I put one hand on his tiny head and one on his tiny feet and as I swaddled him I’d silently say to him, “Owen, take my strength, I will find more”. And he did. And I did too.

Owen and Tatum shortly before Owen's emergency bowel surgery, May 24, 2011

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.