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 Truth About Prematurity

If you took a poll of the number one pet peeve of preemie moms (and dads), I bet “hearing women complaining about those last weeks of pregnancy” would be really high up there.

Personally, my gut reaction when I hear someone complain is, “I would take any…A-N-Y!!!…amount of pain and discomfort to not have had my kids in the NICU”. I also think about my friends who struggle with infertility and how they must hate to hear people complaining about the one thing, they so wish they could have.

At the same time, I try to be reasonable. In some ways, it feels like it should be a God-given right to complain a little when you’re pregnant. I do get it. Okay, well not fully, both of my kids were preemies. However, I remember being 34 weeks pregnant and thinking, “wow, I’m going to get 6-weeks-more uncomfortable than this?” It’s no secret. The last weeks of a full term pregnancy are a mess of raging hormones, fluid retention, heart burn, Braxton hicks and real contractions, stretched, itchy belly skin, bladder/rib/back pain, you can’t see your feet and even if you could, your shoes don’t fit and then there are the, very embarrassing, things that your body is doing.

It really is conflicting for me, because I know these moms are not hoping their kids will be born sick. At the same time, I know that too many people don’t understand the importance of those last weeks of pregnancy. They don’t imagine feeding tubes shoved down the baby’s nose and IVs sticking out his head. When they say they are, “over being pregnant”, they don’t mean they would rather have the baby and leave him at the hospital until he is ready to come home. Maybe these moms haven’t seen data, like shown in this 2010 CNN Article, that states that at 34 weeks the risk of respiratory distress increases 40 (FOURTY!) times. Even at 37 weeks, there is a 3 times greater risk for respiratory distress than those who are born at 39-40 weeks.

I’ve really worked on removing the emotion and instead, sharing support for those moms nearing the end of a full-term pregnancy. I focus on not taking it personally, but also consider myself an advocate for premature babies and their parents, so I can’t ignore the statement either.

Here was my comment to someone who was having a frustrating pregnancy day yesterday:

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The comment that followed mine was by someone I do not know.  Nor, do I ever need to know.

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What the…?!  Is she endorsing late term prematurity because her kids are fine?

There are a lot of misconceptions about prematurity, so I wouldn’t be surprised to see something like, “my friend has a preemie, he’s fine…” but this isn’t a “friend” situation.  This is a two-time preemie mom saying it’s no big deal to have a preemie.

I can’t stand cyber-wars and I had nothing nice to say, so I simply responded with,

You’re a very lucky lady, [her name here].

But, of course I stewed.  I’m not going to skewer the person who said these things.  That’s not fair, she’s not here to defend herself and I have no idea who she is.  However, I am going to say that her answer is the exact answer I expect to hear when I talk about prematurity to people.  No, I don’t normally hear it from other preemie moms, but the misconceptions for the general population are unreal!

Absolutely unreal!

I’ve had several commenters on ANRC tell me to not be so hard on people who seem to gloss over the risks for premature babies because it’s done with good intentions.  While I do understand that it’s good intentions and I am not a proponent of personally attacking someone for saying things like, “most of these kids turn out just fine,” I also believe in the importance of advocating for these children and their families by sharing the truth about prematurity.

I’ve had to learn…the hard way…the truth about prematurity.  I know what prematurity looks like in its best cases and what it looks like in the worst cases.

I have a brother who was a preemie and a mother who has struggled with the guilt that she felt for his early birth.  My earliest childhood stories were about my mom going into labor with me at 31 weeks, but in my case, they were able to stop her labor and she was on bedrest for 6 more weeks.  I can see the vast differences in my childhood and adult life versus my brother’s…much of that due to me being lucky enough to have been born after he and so my mom was watched much closer.

I understand the deafening silence as you wait to hear your 34 weeker cry.  I have felt the frustration of being a mother, but not being able to decide when you can and cannot hold or care for your child.  I’ve lived the loneliness of leaving the hospital while my child stayed.  I have a reoccurring nightmare about someone attempting to shove a drinking straw down my nose as I try to process what it must have been like for my boys to have nasal feeding tubes.  I have cried for babies that died in the bed next to my son.  I’ve dealt with parent survivors guilt and the random nature of who does and who does not go home from the NICU.  I’ve been secretly jealous of how well another preemie is doing, and then later I’ve learned they are diagnosed with epilepsy or cerebral palsy or asthma or autism or ADHD.

But, in case you’re thinking that I’m just an over-sensitive preemie mom, don’t take my word for it, here are the truths about prematurity from the experts; March of Dimes (MOD), Mayo Clinic (Mayo) and Center for Disease Control and Prevention (CDC).  Links are provided with first fact from each resource.

The truth about prematurity is the risks are real. 

The truth about prematurity is it is a national and global crisis. 

  • 1 in 9 babies born in the United States is born too soon (MOD).
  • Worldwide, 15 million babies are born prematurely each year (MOD).
  • Pre-term birth costs the US health care system $26 Billion Annually (CDC)

The truth about prematurity is it often does not end when the baby goes home or when they turn two, or any other magical number. (Mayo)

  •  Premature children are more likely to have imparied cognitive skills and learning disabilities.
  • Preemies, especially those born before 30 weeks, may develop retinopathy of prematurity (ROP) which leads to 400-600 legally blind infants annually in the U. S.
  • Premature babies are at increased risk of some degree of hearing loss.
  • Children who experienced premature birth are more likely than full-term infants to have certain behavioral and psychological problems, such as attention deficit hyperactivity disorder, depression or generalized anxiety, and difficulties interacting with kids their own age.
  • Premature children are more likely to have chronic health issues including; Infections, asthma and feeding problems.
  • Premature infants are at increased risk of sudden infant death syndrome (SIDS).
  • For some premature babies, difficulties may not appear until later in childhood or even adulthood.

The truth about prematurity is, not enough people understand the truth about prematurity.

I will not spend any more of my energy stewing over an unfortunate comment on Facebook, but I will continue to advocate.  I will continue to correct people when they say, “most of these kids turn out fine” or, “it’s okay if the baby is a little early”. I will continue to wish friends a comfortable end of pregnancy, rather than a too soon end of pregnancy.

Sometimes I may seem annoyingly repetitive, or overly angry but I will not stop sharing the truth about prematurity.

Healthy babies are ABSOLUTELY worth the wait. 

 

 

 

What I Wish Everyone Knew About This Preemie Life

Over the last eleven months of blogging, I have noticed a theme within many preemie bloggers’ reason for blogging.  We simply want people to better understand our journey.  For me, what I really ended up finding has been solidarity with other preemie families and a lot of healing through the process of writing and reading my thoughts in others’ writings. Those aspects of keeping a blog have been wonderful gifts and probably more healing than educating “the rest of the world”.

However, I can’t help but still wish for that original goal.  I do have some non-preemie readers, but the majority of this blog’s readers are other preemie parents.  If I had to sum it up into one list of things that I wish people knew about prematurity and being a preemie parent, these are my big ones.

Premature babies aren’t just smaller versions of full-term babies.  Premature babies are born sick.  By referring to where they stay as the “NICU” as one word, it seems that many people forget that the last three letters stand for Intensive Care Unit.  Prematurity, regardless of gestation, presents serious long and short term health and development concerns.

Every premature baby’s story is different.  Your sister’s best friend’s cousin may have had a 22 week 6 day preemie who was less than one pound at birth and is now a Rhodes Scholar and Olympic athlete…or maybe she’s “just fine now”, but that doesn’t in any way predict the outcome for any other preemie.  Preemie parents’ concerns and fears for their children’s immediate and long-term future are real.  You’re right, pondering on those concerns won’t change anything, but if you just brush the concerns under the rug, you’re not being honest, or don’t understand, the risks for children born too soon.

There is nothing magical about two.  Being born too soon is not something that is outgrown.  Medically speaking, once a child is past their due date, they are a “former preemie”.  However, that does not mean the baby has caught up and many don’t “catch up” at two, or ever.  One example is Owen, he will be two in 25 days.  He’s still on oxygen support, he does not eat, he does not walk, he does not talk, nasal congestion caused by teething requires breathing treatments.  He’s not all that unusual within the preemie world.  There are many premature children who are doing better than he and there are many that are not doing as well.  He’s not technically still a preemie, but turning two doesn’t make the impact of his premature birth go away.

Washing your hands is really easy.  I’m pretty appalled that I even have to include this point.  Just do it. It’s the most effective way to prevent the spread of illness and disease.

I am (over) sensitive.  The emotional toll of prematurity is significant for the entire family.  You may mean no harm when you complain about your last weeks of a full-term pregnancy, or use the r-word or try to tell me that I am being over-protective of my child, however, those are only reminders to me that you don’t, at all, get me or my experience.  That makes me feel lonely and sad and a whole slew of other emotions that I haven’t figured out yet.  Just like there is nothing magical in the child turning two, there isn’t some magical point when I become “okay” again either.

I’m not amazing.  I don’t deserve to be on any parenting pedestal.  Some days I’m a great mom, some days I pray that I didn’t just screw up my kids for life.  The tasks on my job description for mom may look a little different from many other’s but at the end of the day, I’m just doing what I need to do to give my kids’ their best chances.  Trust me, it’s what you would do too.

I miss you too.  Partly because of those extra tasks on the job description and partly because of my new emotional needs, I don’t get to see my friends as much now.  For those same reason, I do need to hear from you still.  Thank you for making the effort when it seems one-sided.  I like to hear about your life and not just talk about mine.  If you’re having troubles, I want to still be able to help you through them.  You may need to be more direct with your needs from me, but I am still here for you.  I value your friendship and am so thankful that you’ve stuck by me.

Other preemie parents, what would you add?  Also, I’d love to hear from non-preemie friends and families who follow this blog; what do you think are the key things you’ve learned that we preemie families might be so close to it all that we miss the lesson?

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The beauty of a smile

I think about this post every day.  Each time I look at either of my boys and their smiles I’m awwed.  Not by what they have overcome, but HOW they have overcome it.  I know they aren’t alone.  Between Facebook and ANRC connections, I’ve seen so many pictures of preemies.  There is something magical about these babies.  It’s as if they already know that life is to be cherished and enjoyed no matter how hard it’s been.

For me, the most difficult thing I have been through is watching my children struggle.  With Kellen it was waiting … for what felt like an eternity… to hear him cry after he was born. For Owen, it was the entire first year of backward step after backward step – constantly fighting to live.  For many readers of ANRC, watching your child struggle with prematurity and/or special needs have also been your biggest challenges.  However, even if prematurity hasn’t directly affected you, I’m sure you’ve had your own life struggles; maybe you’ve lost a loved one, had a car accident, filed for bankruptcy, got divorced, were abused, lost a job, fought a life threatening illness or on and on and on.  We have ALL struggled in life.

It doesn’t matter what the struggle, we can learn so much from these tiny warriors who were born fighting for their lives.  For each, there is a story of hope, perseverance, over coming all odds and unconditional love.  And then, there are the smiles.  There is no better reminder to smile than to look at the pictures of former preemies growing up and being their amazing selves.

Whatever your struggle is today, here are several reminders that there is hope, so don’t stop smiling.

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Haircut with blue streaks

 

Special thanks to all the families who shared their child’s picture.

 

Fear of the Jinx

Owen’s breathing has been Fan-tab-u-lous lately.  I mean, really, really good.    Even through his illness last week, he’s done amazing.  Because it’s been so good, we only have him on the monitor when he’s sleeping and nearly every time I walk into his room his cannulas are not in his nose and I’d never know by looking at the monitor or his breathing patterns.  I checked in with Pulmonary yesterday and they weaned his diuretics again.  He’s now at ½ what he was getting just a month ago.  From my Google wizardry and rounded math, his current dose is at the bare minimum of what’s considered therapeutic –  in other words, anything less isn’t going to do much.

Great news, right?

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NICU Follow Up Recap

As I mentioned yesterday, Kyle and I took Owen to his NICU follow-up appointment on Friday. These appointments are with the Neonatologists that work in the NICU and are a more in depth look at nutrition and development than you’d get at a well-visit with the pediatrician. Prior to all of Owen’s hospitalizations for respiratory illnesses over the flu and cold season, the Neonatologists also followed Owen’s lung health, but that is now managed by the Pediatric Pulmonary team.

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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