Those Sneaky Birthdays

Considering the fact that it seemed Spring would never come, I’m not really sure how it is suddenly April 21st – but here it is…Owen’s Birthday!

The truth is, it’s been so busy that I’ve not even had time to ponder what this birthday means to me.  It’s the first birthday for Owen that is about Owen…not about how his birthday makes me feel.  And what a year to celebrate…what a THREE years to celebrate.
Owen just after birth

 

April 21, 2011:  Born at 5:18 AM at 800 grams.  He made a small cry and had APGARS of 6, 7 & 8.  We were told that white males born at his gestation and weight had less than 50% chance of survival and if he survived, he had an 80% chance of a long-term impairment.

 

 

 

 

April 21, 2012:  In the PICU, on Bi-Pap with a rate.  Owen’s 224th day in the hospital that year.  He had no voice – not even when he cried, could barely support his own head and was just starting to willingly put weight on his arms and legs.  Breathing was the constant worry, but there weren’t many patients who could better flirt with the nurses.

 

 

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April 21, 2013:  Finally a party!  If the first year was about surviving, the second year was about therapy.  3-5 therapy sessions per week and things were starting to click, he was walking behind carts, started using a handful of words and had started weaning off his oxygen.

 
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April 21, 2014:  A full head of hair, a full mouth of (yellow) teeth, a vocabulary fit for a 2.5 year old, been walking for 6 months and haven’t had a whiff of oxygen in 10 months…oh, and NO hospital overnights.

 

 

 

Do I wish that Owen had a July or August birthday?  Well, I imagine it would have been an easier last three years if he did, but this year, I can’t really feel the need to acknowledge the bitter part of April 21st. Starting this year, it’s just a really sweet day that was the beginning of life with a rascal.

Happy Birthday, Owen!  You are amazing.  You are an inspiration.  You are THREE!

The Best Problem a Mom Could Have

All week long, I have been out of rhythm.  I didn’t post yesterday because my house looked like a tornado had rumbled through and I felt like I had too many things on my to-do list.  The only problem is my house and list don’t look much better than when the day started AND, I still managed to have a major Mommy Fail by forgetting to take Kellen’s lunch to school.

Seriously, how bad is that?!  He waited at the table while the other kids started eating and after the teacher called and we agreed on a plan, she told Kellen he could walk down with her to pick scavenge some food out of the kitchen.  Kellen calmly said, “no, my mom’s bringing my lunch”.  Ahhhh, just stab me in the heart!  He had faith in me and I had a Mommy Fail.  (He did end up with a lunch he loved – fruit, cheese and crackers and yogurt, thanks to wonderful teachers).

I’m sure at this point, you’re thinking, “so…why is this the best problem a mom could have?”  Okay, forgetting Kellen’s lunch was definitely the low point and I have some serious remorse over it, but the rest of the disorganization has been smaller things…like the fact that my house looks, well… embarrassing.  I’m barely getting the dishes done and don’t ask me about the amount of folded and unfolded laundry on my couch.  I’m far from an impeccable house keeper, but this is embarrassing, by even my standards.  All week, I’ve been trying to figure out why – it’s not been a very appointment busy week?

And then yesterday this happened:

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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