Time

Time is a funny thing.

That first year after Owen was born..that time was dog years and then some.  I’m not sure time could have moved any slower.  Each minute felt like a century.

People would often say, “this will get better” and it did nothing for my perspective.  The next ten minutes ahead of me seemed so far away that I really couldn’t see a glimmer of light at the end of that tunnel of time.  It’s not that I didn’t believe it would one day get better.  It’s that time was moving so slow that those days to better were too far away to start thinking about.

The smaller and sicker your child is at birth, the higher the risks for long-term delays and disabilities.  We knew Owen was very high risk in terms of long-term issues.  In the early days of ANRC, I shared a post, Preemie Parent Curse:  The Known Unknowns.  I went over so many questions we had about Owen’s future; would he walk, would he talk, would he eat, and on and on.   The answer to those questions seemed so far away.

I hated the wait.  I wanted predictions.  What was Owen’s future going to be?

And then something funny happened with time.  It went from a snails pace to warp speed.  Thirteen months have gone by since I wrote that post.  I’m not really sure where the time went.  I look at Owen’s pictures at that time last year…just learning to support his own head.

Owen showed off his feet

And now look how far he has come.

See all of the kids lined up around the stadium?  The line goes up inside the stadium and all the way back around to the far right of the photo.

Rounding the bases as the lead runner for the Kid’s Running of the Field at the Minnesota Twin’s stadium

DSC_1156

There is still a lot I don’t know about Owen’s future.  I still fear that other kids might not accept him because he isn’t doing everything they are.  It, of course, would be easier to prepare if we had a crystal ball.  But do you know what?  Whatever my worst fears were a year ago, Owen has already surpassed them.

I received an email from a mom who recently received a PVL diagnosis, she wanted to find some hope.  I replied that nothing I said would probably be the right words for hope, but if she really wanted to find it, she should look at her daughters.  The fighting that they have done in their short life to date…these babies never lose that fight and drive.

The unknowns are still there and they are concerning, but concern is different than worry.

I know that Owen is determined to be his best.  It used to be his best was making it through the day with the help of a lot of medical intervention.  Today his best is asking for his “nau-kie” (pacifier) and “nana” (blanket) after a busy day climbing on the toddler gym.  Tomorrow his best will be something else.

Sometime in the last year, my focus has shifted to what Owen can do instead of what he maybe won’t do.  I know that soon enough, maybe even too soon, I will have all the answers.  He’s growing up on me so quickly (starting school on Monday EEEEKKKKK).

Most importantly, whatever his future holds, I know he’s equipped to handle it.  Yes, Owen will probably have some differences from his peers…but you know what, I’ve finally realized…that’s okay.

In some ways, it has taken an eternity to get to today, in other ways I can’t believe he’s already almost 26 months old.  Time may be the most subjective measurement of all.  It feels different for each second, minute, day and year.

I am not “over it“, but I’m also not wishing time away anymore.

That’s worth something, right?

 

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