Are We Lucky?

I’m not ready…and probably will never be ready to say, “it happened for a reason”.  To see your child in pain, fighting for their life.  I can’t think of many outcomes that makes me think my child…any child…should have to go through that existence as atonement (as some suggest) or as part of the process to get a good result.  I can’t say I’m a religious person, but I do believe in a higher power and in my personal belief, that higher power isn’t master planning terrible events to teach people a lesson.

My theory is we are an imperfect species and sometimes things, for a lack of a better term, malfunction.  In my pregnancies, my body malfunctioned.  Especially for Owen, the results of that malfunction was pretty horrific.  The physical pain and suffering that he had to go through – it was intense.  I can’t identify any “reason” that makes it okay.

But I do believe that I have a choice on how I respond.

Let’s be honest, a response is a moment in time.  Some days I respond really quite well.  Other days aren’t quite so exemplary.  In truth, there are days that getting out of bed seems like a super human feat.  On those days, my focus is what we all lost.  What we’ve been through, how our life has changed forever and that Owen never got a choice in any of this.

On my best days, I sit and wonder about the same events that can get me struggling to get out of bed, but instead of being overwhelmed with how hard it was, I am awed by how lucky we have been.

  • My symptoms of preterm labor were really mild.  In truth I called the on-call OB-GYN on a Saturday night at 10:00 because I had a gut feeling and the tiniest sliver of pink in my discharge.  The fact that we and the OB took my symptoms seriously meant that I received the steroid shots to help Owen’s lung development and when he came very quickly with no warning, we were in a hospital equipped to give him his best chances.  Lucky.
  • I went into the hospital at 24 weeks exactly.  Our hospital assumed Owen was viable.  Thankful.
  • The statistics we were given were grim.  For a white male at 24 weeks who was typical sized and received the steroid shots via mom,  he was given a 40% chance of survival and a 20% chance of having no long term issues.  Owen is a survivor. Blessed.  Owen has global delays, but he’s only 2.5 and he’s surpassed so many expectations.  Hopeful.
  • Complication on top of set back on top of “never seen that before”.  Owen pulled through it all.   Miracle.
  • Bilateral PVL with Cysts diagnosis.  The doctors didn’t give statistics but I scoured medical research papers and found them.  They weren’t pretty.  Nearly all had CP diagnoses and about half weren’t able to walk at three.  Owen’s tone continues to look good (CP not an expected label) and he’s taking a few steps here and there.  Odds-Defied.
  •   Minimal vocal sounds at 1-year old.  Turning into a little jabber jaws at 2.5.  Amazing.
  • 230 days in the hospital in his first 53 weeks of life.  Days in the hospital ever since?  Zero.  Mind-blowing.  (knock on wood)
  • Tears of fear and frustration for months.  Tears I’m wiping away as I write this post.  Joy.

This smile while dressed in scrubs in homage to NICU nurses on Neonatal Nurses Day on Sunday.  Serendipity.

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I don’t expect my response to be perfect to all of this.  I accept bad days.  Not bad days that Owen and Kellen need to see…but bad days that I need to give myself.  After all, I am human – an imperfect species – and I do malfunction sometimes.  I am also lucky and blessed and thankful and incredibly grateful for all the “what ifs” that have turned out in our favor.

I won’t accept that it happened for a reason.  I’d rather it not have happened at all, but it did and in many, many ways we were so very lucky.

Delays-Schmelays

Owen has had several development assessments over the last month.  Early intervention did their annual review and updated his HELP assessment.  He met with a Physical Medicine and Rehabilitation doctor for the first time.  He had a speech evaluation (PLS-5 tool) to kick off Speech Therapy.  And, on Friday he had a NICU Follow Up Appointment where they administered the Bayley assessment.

It doesn’t matter which assessment or type of health professional you ask.  Owen is developmentally at the 10-12 month-old-level.  He was born 20.5 months ago and his due date was 17 months ago (we stop correcting in April).  Clearly, his development is behind his birth date.

Many people would look at these scores and be devastated.  We are not.

We are thrilled.

The progress Owen has made since his first birthday has been amazing to watch.  At one-year-old, he was like a limp noodle.  When I held him, it was like holding a newborn, he supported none of his weight and sunk into my chest.  He could only bear weight for a second or two in his arms and legs and he could not roll over in either direction.  Owen was also, essentially, mute.  His cry was barely audible and the only other sound we ever heard from him was wheezing when he struggled to breathe.

Had we given these same assessments to him on his first birthday, by my best estimates, he’d have scored at the 0-2 months level for language, probably 2-3 month for gross motor and maybe 3-4 months for fine motor skills.

Now, put those scores into this context.  He was born 15 weeks 2 days too early and he spent a total of almost 8 months in the hospital.  Maybe even more important than those two facts was his breathing.  A typical infant respiratory rate is up to 44 breaths a minute, but after 6 months of age, most take 25-30 breaths a minute.  (Adults take 8-16 breaths a minute.)  In the first year of his life, Owen’s respiratory rate was nearly never below 50 breaths a minute and most of the time 60-70 or more breaths a minute.  Try that for a minute – a breath each second.  As you do it, try doing (let alone learning) a motor activity.  Or, try talking, or even babbling, through a breath each second.  It’s nearly impossible to do.  Owen was not physically able to do much more than breathe and it took a lot of assistance to do that.

Yes, he was born 20.5 months ago, but he did not start to develop until 7-8 months ago when he was physically healthy enough to work on development.  Do you know what that means?

In my mind, Owen is an overachiever.

He’s been developing for 7-8 months and he is at the 10-12 month-old-level.  And he’s done all that with a brain injury, crossed eyes, excessive abdominal scarring and tightness, an oxygen cord constantly in his way and lungs that can’t fully expand.

Yep, I said it: Delays-Schmelays.  My kid is a rock star.

A very busy rock star.

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He’s also exactly, what CurePity is about.  Have you signed the pledge?

Owen’s Open Letter to Nasal Cannulas

Dear Nasal Cannulas,

It’s hard to believe it’s been a year since we met.  I was so excited to meet you.  I had heard about you.  Everyone said how gentle and kind you were and that you gave so much freedom.  After a nine weeks with a couple different ventilators, I needed someone who was not so oppressive and would allow me to more freely express myself.  Those ventilators were so… invasive and controlling.  They literally made me sick a few times.

When we met a year ago today, you were exactly what I needed.  Compared to my last couple relationships you were so gentle and kind and gave me the freedom to snuggle with my mom and dad and finally, my throat stopped hurting.  Around you, my mouth wasn’t dry and you didn’t force me to always have my cheeks puckered and ready for a kiss.  Your tapes were so much softer and didn’t bruise my skin.  Here’s a picture of us on that first day we met.  We looked really happy together.  Content actually.

Owen at 33 weeks, his first day on the Nasal Cannulas. June 22, 2011

When we first met, I never imagined we’d get this serious.  I thought you’d be a few month fling – a rebound, if you will.  But here we are a year later.  You’ve helped me in numerous ways and I’ll always be thankful for what you have given me.  I’m really starting to come into my own and much of that is because of you.

With all that said, it’s a little hard to say this, but I…uhm…it’s just that…okay, here goes…I don’t think you’re the one.

Yep, I’ve said it.  I’m just never going to marry you.  You’re welcome to stick around until we get everything with my meds straightened out, but after that, I think we should go our separate ways.  I know what you’re thinking, I went back to the ventilator a few times after we broke up, so you still have a chance.  Well, please don’t take this the wrong way, but I don’t want to ever see you again once we’re through.  I think we should just, you know, make a clean break.

“Why?” I am sure you’re asking.  Well, it’s not all you, it’s partly me too.  When we met, I was still pretty young – too young, some would say.  I just didn’t understand what I was getting into.  I’ve learned that although you’re nothing like my past relationships, you still are pretty oppressive.  Your tapes have started leaving red marks on my face and when your cords get caught up you yank my head.  (I know you blame my mom for that, but Noooo, she told me, it’s your fault and everything mommies say is right.)  And now that I’m starting to roll, you’re always in the wrong place.  Anyway, you’ve come with a lot of baggage and I just don’t want to deal with it all for much longer, so I think you should start looking for a new home.  I’d suggest it be far, far away – Siberia maybe, because, really, I don’t think we could ever be friends after all that we’ve gone through together.

One last suggestion for your next relationship – you’re not a bad teething chew toy.  Maybe, you should consider that angle for the future.

Owen finding a more appealing use for his nasal cannulas

Sincerely, Owen

PS – I am sorry for the public break up, it was a Big Country, KC Cowboy named Franklin who gave me the idea.  He’s got a couple really cute daughters my age, so I thought I might want to listen to start showing some respect in case I get to meet these beauties one day.

What is Periventricular Leukomalacia (PVL)?

I’ve mentioned both in this ANRC blog and CaringBridge that Owen has a form of brain damage that is a risk for babies born as early as he.  I’ve never spent a lot of time describing it for a few reasons.  1) We needed to come to terms with it.  2)  It often seems to me that scientist know more about Jupiter than the brain, so it’s not easy to explain.  3)  Knowing what it is doesn’t give a ton of insight into what it means to Owen.

However, implications are slowly coming to light – especially with his eyes – and so I figured its a good time to put a name and brief description to the brain injury that Owen has and why it affects some of the medical and developmental decisions we make for him.  As is the case with all medical information on this blog, remember, I’m a mom, not a doctor.  I do my best to convey the information, as I understand it.  I’ve included links to some sites on PVL so anyone with further desire to learn can get it from the true experts.

What is Periventricular leukomalacia (PVL)?  PVL is an injury to the inner part of the brain that transmits information from one part of the brain to another.

This image from the University of Maryland Medical Center website shows the area of the brain that is injured with PVL

What causes PVL?  PVL is most common in premature infants.  Those especially at risk are born before 32 weeks, weigh less than 1500 grams (3.3 lbs), are very ill due to infection at or near birth and require PDA surgery.  Basically the smaller and sicker you are, the greater your risk for PVL.  For reference – Owen was born at 24 weeks, 5 days, weighed 800 grams, had multiple infections, including one extremely bad in CMV and had PDA surgery at 8 days old.

What are the outcomes of PVL?  PVL outcomes depend on the extent of the damage and specifically where the damage is.  PVL can occur on one or both sides of the brain.  PVL with Cysts (truly dead, not just damaged areas) is more advanced injury.  The greatest risks are Cerebral Palsy and/or Developmental delays, vision and hearing disturbances, mental retardation, learning difficulties, epilepsy and behavior problems.  Every child is different in terms of how well they are able to compensate for the damaged areas and early intervention through physical, occupation and speech therapies is essential in helping the child reach their maximum potential.  Some children with PVL are only developmentally delayed and eventually “catch up” while others are physically and mentally impaired for life – the variation is great.

To what extent is Owen’s PVL?  Owen has bi-lateral (both sides) PVL with cysts.  The area of damage is relatively contained.

What are the expectations for Owen’s abilities in regards to his PVL?  I’ll refer you to the Known Unknown post for the best answer to this question, but essentially his eyes are the first confirmed issue due to PVL.  We also know that Owen has significant development delays – especially in gross motor and language skills, but that could just as easily be explained by the extent of trauma and illness that he faced in his first year.  Owen’s development is tracked very closely by many doctors, therapists, a special education teacher from the school district and, most closely, by Kyle and me.  With each day and every skill that Owen masters, I get more optimistic.

If you’re interested in learning more, below are some of the resources I found most helpful in understanding Owen’s diagnosis.  The below are summaries, but I’ve also spent a lot of time reading research in medical journals. If you are a parent of a child who has PVL and would like to learn more about how to get to those articles, feel free to contact me.  If you’re wondering how to cope with the new of PVL, I’ve shared our story here.

Emedicine, Medscape Reference

National Institute of Neurological Disorders and Stroke

CP Parent 

Children’s Hospital Boston

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.