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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A Changed Perspective: Parents of Preemies Day

Parents of Preemies Day?  Created by … none other than…Preemie Parents?  That’s a little…I don’t know…”pat  your own back,” much?

 

Okay, I admit it. That was my initial reaction.  When the first Parents of Preemies Day was going viral last year, I sat back and watched in skepticism   “Woo hoo, my body failed me and now my kid’s sick.  And that makes me special, how?!”  Throw in a couple expletives and that’s pretty much what I was thinking.

I know, that’s a really negative way to start a post but on a positive note, I can say this; It’s amazing what a year can do to your perspective.

Last March, just 3 days before Parents of Preemies Day, this was my personal Facebook post.

3.21 post

 

When I posted that, we were on day 21 of a 29 day hospital stay for RSV.  The only reason we went home on day 29 was because I said we were going home.  Owen was still on 2-3 liters of oxygen.  He was otherwise stable and our family could not take anymore.  At that point, I was so tired.  We were all tired.  We were inches from breaking.

Proud to be a preemie parent was the last thing I was feeling.  Tired.  Beat down.  Exhausted.  Lonely.  Like I failed.  “Kicked in the gut” were Kyle’s words.  “Ain’t No F’in Roller Coaster”  (the truth behind the name) were my words.

I was proud as proud could be of Owen.  The gravity of his situation was finally starting to sink in and I was starting to grasp how lucky we were to be where we were.   I was also proud of Kellen.  He was exhibiting trying behavior that month, but I also knew why and I could see he was trying so hard to understand.  He was really trying to put on a brave face and act like it was normal to go to the hospital, not home, to have dinner as a family.  I was proud of Kyle.  He was putting Kellen to bed each night and getting him ready for school, going to work and then leaving work at 3:00 to work from the hospital while I went home to walk the dog and put in a load of laundry and picked up Kellen from school.

I felt pride for each of them, but not for me.  Instead, I just felt tired.  And really angry with my body.  Angry that we were in the hospital…again…still.  And as you can see from my Facebook post, I felt so much guilt for complaining because I knew how lucky we were to be in that hospital.  You know…instead of the alternative.

Last March, the idea of celebrating being a Parent of Preemies didn’t fit with my frame of mind.  But as I already said, it is amazing what a year can do to your perspective. I look back over these last twelve months with so much pride.  It’s not just about how far Owen has come.  It’s about how far we have ALL come.  Our entire family has made it through some really heavy storms.  And you know what?

We.  Did NOT. Break.  There are wounds still to heal and scars that are still restrictive, but we did not break.

One of the reason’s I struggled with “pride” in being a preemie parent is that I felt (and still feel) that I was just doing what any mom would do.  I have simply done the best I could for my kids.

But here’s the thing.  Do you know that statement that, it seems, most preemie parents hear and hate…this one:

I don’t know what I would do in your situation.

Well, I do.  I do know what I would do in this situation.  I promise you I haven’t done it perfectly, but you know what?  I’ve done the best that I could and I didn’t break.  There were broken moments, but I did not break.

Every person has moments in their lives when they have to prove they will not break.  Maybe it’s fighting for our country or addiction or an accident.  Everyone has to go through something that proves they have super hero strength.

For our family and for the families of most of ANRC’s readers, the repercussions of the premature birth of our children have been those moments where breaking seemed most possible.

We didn’t break.

I didn’t and neither did you.  And if you’re still in the throes of it and wondering if maybe you will.  Trust me, you won’t.  One day, you’ll look back and be amazed by your super hero inner strength.

The fact that so many of us didn’t break and that we’ve supported each other throughout; that’s what, this year, makes me proud to be a Parent of Preemies.

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x 2!

Im a preemie mom Preemie Dad

And if you’re not a preemie parent, whatever challenge you’ve fought through, I hope you take a day to celebrate that you didn’t break.

That Whole Thing About Two

No one really believes it, right?  That preemies catch up by two?

I’m not even going there with Owen.  Nope.  Not going to do it.

With Kellen, my 34 weeker, however, I did go there.  Guess what…two was not his magic number.  When he switched from an infant only daycare that was at my work, to the toddler/preschool that he currently attends, he was 16 months actual.  Those other kids ran circles around him.  I’m pretty sure he was the only one the teacher had to help step down curbs.  He wasn’t so far behind that he was out of his league, but he definitely was behind most of his friends in all areas.

At his two year well visit, we stopped correcting for height and weight.  He went from 75th percentile to the 50th.  He happens to be in a group of kids that are really tall, so he was on the shorter end for his class.  On the most part, by two, I wasn’t noticing the differences between Kellen and his friends so much, but I did notice that all of his friends were in the younger half of the class….the ones that were born closer to his due date.

And then we had a surge.  At his 3 year well visit, Kellen was in the 80th percentile for height/weight.  He had grown 4.5 inches and was starting to be one of the taller kids in his class.  His 3 year well visit was the first that there weren’t development questions that he was questionable on.  80th percentile felt okay for his height.  Kyle is 80th percentile, I’m off the charts on the high end, so the doctor felt that gave us a good indicator that Kellen was going to be built like Kyle.

But the surge didn’t stop.  Earlier this month we had Kellen’s 4 year well visit.  He’s now in the 95th percentile for height and 90th for weight.  He grew another 4 inches last year.  Guys, he’s 43″ at 4!  His development is still on track for a 4-year-old.  He socializes really well.  He’s learning and loves to learn in school and he’s pretty athletic.  However, as I learn more about preemies, I’m starting to realize some of Kellen’s behavior quirks may be preemie related.  At four, he still will steal Owen’s pacifiers if he thinks we won’t catch him.  he’s very oral…everything goes in his mouth.  EVERYTHING!  Salt, baking soda, vinegar, paint, glue, paste, mud, rocks.  EVERYTHING.  Just like a baby, his mouth is still his go-to sense for exploration.  He’s impulsive and demands a lot of his caretakers attentions and just may go on to cause us some grief in his toddler through teenage years, if you know what I mean.

In all honesty, no one could definitively say that these behaviors aren’t just who Kellen would have been regardless of gestation.  He’s clearly in the range of “typical” and he’s had some pretty scary life events for his young age that impact his behaviors.  At the same time, it’s not lost on me that sensory and behavior “quirks” are two of the most frequent long term effects of prematurity.  According to March of Dimes, a baby’s brain at 35 weeks is just 2/3 the weight of a 39 week baby’s brain.  Even though Kellen was a large, 6 pound 34 weeker, he wasn’t done developing when he was born.

Don’t get me wrong, I don’t have a ton of worries about Kellen’s future.  He’s bright, excels at social skills and has a “get things done” kind of attitude.  He’s going to do well in life – I know he won’t accept less.  At the same time, even in his case; a 34 weeker who spent 10 days in a special care unit and never has had another hospitalization, I still can’t confidently say he’s “outgrown” being a preemie.

Being a preemie does not define Kellen (or Owen), but it is still part of his history.  Part of who he is today and, I would guess, part of who he will always be.  That doesn’t mean he, or any of our preemies, won’t be amazing adults, it just means their start was a little different than others.  Their start doesn’t change at two.

I shared this infographic during Prematurity Awareness month, but thought it’d be good to share again today.  Proof that preemies have every opportunity to continue to be amazing.

Famous Artists

A Preemie is NOT A Preemie

I believe every preemie story is unique.

I believe that anytime your child is in the hospital, it is hard, lonely, frustrating, scary and sad.

I believe my letter to new preemie parents is valid regardless of the course the individual baby has.

I believe the data that proves any child born before 39 weeks is at a greater risk of short and long-term health and developmental issues.

I believe that the emotional toll for all preemie parents is significant, valid and, for many, life long.

And, whenever I see this statement; “36 weeks or 23 weeks, a preemie is a preemie” I feel like someone wearing 6 inch stilettos is kicking me in the gut.  Honestly, just typing those bolded letters bring tears to my eyes.  It makes me feel lonely and like I should discount some of the harder parts of my experience.

There are many shared experiences within a NICU stay.  The fear when you find out the baby is arriving early.  The loneliness of not having the baby in the room with you, instead you have to walk through the halls (often seeing other mothers with their healthy babies) to see your child in the NICU.  You have to ask to hold your child, there are cords and strange machines, IVs, frequent blood draws, feeding tubes.  You’re discharged from the hospital and your baby stays on.  It’s not the experience any parent can prepare themselves for and it’s devastating   There is guilt and anger and hurt and sadness.  No matter the length of the pregnancy, when your child is born sick, all of this is true.

At the same time, some preemies have additional complications that can add further layers to that hurt.

When you’ve been in the NICU a certain point of time and all the babies who were born at the same time as yours, or after yours – at the same gestation who were also really sick – have been home for weeks or months and you’re still going to the hospital every day.  You are still wondering if you will ever bring your baby home.  That is another layer of hurt.

When you have pictures like this with your child.  Pictures that were taken because you realize these may be your last moments with him.  As you walk through the NICU halls and feel the looks of pity from the staff, because you know, they don’t think he’s going to live.  When the Social Worker and Chaplain stop by, not just to say hi, but because the doctors have called to let them know there is imminent concern for your child.  That is another layer of hurt.

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

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

When it slowly sinks in that you’re not just a preemie parent, you’re also a special needs parent.  That your child isn’t “just” not going to get “normal” at birth and infancy, he’s probably never going to get “normal”.  That is another layer of hurt.

I don’t say this as competition.  Competition, according to Merriam Webster, insinuates a rivalry.  I believe the preemie community needs to unite and support each other because there are so many ways that we hurt alike.  I would never discount the hurt that someone is feeling because they haven’t had as many complications as we have dealt with.  At the same time, I would never discount the other layers of hurt that some had that we did not.  I will not compete, but I do hope for perspective and support.  Perspective.  Not competition.

I recently had lunch with a NICU friend whose son died after 7.5 months in the NICU.  She’s been very open that it’s important to her to maintain relationships with her NICU friends because she is still not “over” the NICU experience.  She knows that other NICU and preemie moms understand part of her experience that the rest of her world does not understand.  I cannot begin to understand the layers and layers of hurt of losing a child.  It’s clear to me and to her, that some of our hurts are different.  But, because we also share many of the same hurts, we still depend on each other in our support systems.  Our journey and our perspectives are different.  Both perspectives are valid and honest and true and much too real.  Each perspective hurts, but the hurt is not all the same.

I don’t care what gestation your child was born.  If you didn’t get what you expected; that hurt.  Your hurt is valid.  I want to support those layers of hurt; each layer of hurt.  I hope you also want to support each of my layers of hurt.

Does that make sense?  I am not a proponent of competing on who has it worse.  I agree, that’s a ridiculous and very unhealthy notion.  However, I can’t discount parts of my experiences or anyone else’s experience because they didn’t happen to everyone else.  Whenever I hear, “…a preemie is a preemie” I feel like I’m expected to forget those layers.  I won’t forget and I need help getting through those layers.  I don’t want to ignore them.

Each story is valid and, in its entirety, deserves each other’s support.

Popular Cliches Translated

McCloskey

Say What?!

Sometimes the really nice thing you meant to say, isn’t what I heard at all.  If you just used a cliché, that’s probably especially true.  It, in all honesty, is a two-part problem.

First there’s me. I’m what Ellen over at Love that Max, calls a warrior mom.  Nearly all mom’s battle for their kids; special need moms battle for their kids almost every day.  That makes me a little defensive.  Then throw in that the reason my son has special needs is because my body failed him.  (That’s not guilt speaking.  That’s truth.  Owen was born more than 15 weeks early because my body failed at being pregnant.)  This truth adds some fragility to my mindset.  Whether I know clichés are intended as good or not, there is always this part of my mind that also sees the negative in them.

The other part of the problem is that clichés have become…well… very cliché.  They are used when people don’t know what else to say.  So, they pull out something they’ve heard before and hope it fits.  At best they are empty words.  At worst, if you really think about the words that are in clichés, they often say exactly the opposite of what is truly meant.

So here it is, my really honest breakdown of some of the most frequently used clichés and my positive and negative interpretations of them.

Cliché:  “He just wanted to come early, didn’t he?”

What I am pretty sure you meant:  “Wow, he was incredibly early.  It’s really hard to wrap my head around a baby this small.  This is scary but I’m going to keep up my hope for you.”

What I couldn’t help but hear:  “This is all his fault.”

Cliché:  “This kid has really put you guys through the wringer, hasn’t he?”

What I am pretty sure you meant:  “Your family has been going through an unbelievably difficult time.  I don’t understand why these things happen, but I hope it gets better for you soon.”

What I couldn’t help but hear:  “He is bad”

Cliché:  “When I’m having a tough day, I just think about you guys and know I have a lot to be thankful for.”

What I’m pretty sure you meant:  “I really admire your strength and positive attitude through this difficult time.  You’re a great example of finding the good, even during the hard times.”

What I couldn’t help but hear:  “Your life sucks.  I wouldn’t want to be you.”

Cliché:  “This has been a real roller coaster ride, hasn’t it?”

What I’m pretty sure you meant:  “Your family has been through a lot of ups and downs.  I hope it’s more ups than downs soon.”

What I couldn’t help but hear:  “Wahoo, let’s go to Six Flags!”

Cliché:  “These things happen for a reason.”

What I’m pretty sure you meant:  “I don’t know why these things happen, but I do believe you have the power to make the best out of a difficult situation.”

What I couldn’t help but hear:  “Your son is the sacrificial lamb of a lesson you needed to learn”

I’m sorry if I just rained on anybody’s parade of best lines to use when someone is going through a difficult time.  It’s important to emphasize that I have zero ill feelings towards anyone that has said any of these phrases to me.  I do understand it’s hard to know what to say and I can interpret the positive intentions.  To make it even trickier, this is MY list.  We all have our own list.  Here is one Jessi wrote over at Life with Jack (I agree with many of hers, by the way).

You’re probably reading this and thinking, “but what should I say?”  Here’s my advice 1) say something and 2) make it come from your heart.  What comes from your heart may be, “I have no words.”  And that’s okay.  I’m 21 months in and just at the beginning of finding some words on this specific subject.  It’s hard to know what to say.  However, I know I couldn’t have done it without so many wonderful family, friends and strangers with supportive words and actions that came from their heart.  The heart is always wiser than a cliché.

 

A letter from Preemie Families

Dear Friends and Family,

Truth is, it makes me really uncomfortable to ask you to wash your hands when you enter the house.  I hate that I have to ask if you have had your flu shot and are up to date on your TDaP (pertussis) vaccination.  I am just as upset that I have to cancel at the last minute because someone in your family, or our family, has the sniffles.  Actually, because we have limited exposure with the outside world, I’m probably even more disappointed to miss your company.

The last thing I want is for you to feel unwelcome in our home or in any way put out because I notice when you sneeze into your hand and then try to touch my son’s hand.  And do you know what?  In most cases, I agree with you when you say that colds are just a normal part of life.  I know you think I’m paranoid.  I understand that it’s embarrassing to be asked about your hygiene. I know your suggestions about immunity building are well-meaning.

I also must tell you, I hear your exasperated sighs and see your all-knowing eye-rolls at my requests.  When you respond begrudgingly, my embarrassment dissipates and is replaced with anger.  It makes me really angry that you could put your pride in your cleanliness and healthfulness over the life of this child.

what a medically fragile child looks like

You see, Owen is doing remarkably well and has overcome so much in his 20 months of life.  He is so much better than six months or a year ago, but the fact is, he is still a medically fragile child.

This week there have been so many top news stories about the thousands of Americans in the hospital right now due to the Flu.  In Minnesota, one healthy teen has died and another is struggling to live.  As a parent who has watched my child fight to live, my heart breaks for the parents of these children.

At the same time, I am alarmed for my family.

You’ve asked in the past how you can help our family.  The biggest way you can help is this:

  1. When we make plans to see each other, volunteer that you received your flu shot more than two weeks ago.
  2. When you arrive at my house, greet me and the baby and say, “I can’t wait to hold you, as soon as I get my hands washed”.

That’s it.  Those two simple steps will make me feel more support than any other gift you can give.

Maybe, like some say, “paranoid” is the correct word, but really, I don’t care.  I’m just trying to do the best I can for my son.  He won’t always be medically fragile, and while he is, I hope you’ll bear with my requests and support and respect my best efforts to love and care for this child who we all want to see succeed.

Thank you for your understanding, and sticking by our family during this difficult time.

Sincerely,

A Preemie Family

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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?

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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!  

Not Alone – Emotional Holidays after the NICU

The holidays can be a bittersweet time for many preemie families.  There is, of course, joy and time to spend with those that we love and the holidays with a child is always exciting.  At the same time the holidays can be a reminder of the hurt that comes with a baby being born too soon.

Many families are choosing to keep away from larger family gatherings in efforts to protect their children.  All too often, these parents are criticized for being “too overprotective” or “paranoid”.

Other families are spending the holidays with a child, or children, in the hospital.

Some families are reminded that their baby, who has passed, won’t be part of the holiday festivities this year.

And then there are families who struggle with PTSD or PPD and even though they know they are supposed to be happy…and maybe everything worked out as well as it could have, but they still are silently struggling to get through (never over) the pain of their baby coming too soon.

To everyone who is feeling a little bittersweet, I want you to know, YOU ARE NOT ALONE.  From our family to yours, we send you the warmest hugs and wish for you moments of comfort and joy.

For the holidays, remember the wisdom of zebras:

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And most importantly, remember you are not alone.

If you’re feeling bittersweet this holiday season, please leave a comment – you may make someone’s day by sharing that you’re feeling what they are too.

I’ll share first:  I’m missing my family in Wisconsin.  My brothers and nieces and nephew, aunts, uncles and cousins.  I’m missing my niece and nephew that moved to the East Coast and I didn’t get to say goodbye.  I miss time with my family but am also grateful that I’ll be with Kyle, Kellen, Owen and my inlaws.

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Help me Cure Pity

I’ll never forget the first time I felt it. It was one of Owen’s first outings. We were at the neighborhood grocery store. He was in his car seat, clipped into the stroller and facing me. An employee was walking towards us and her face broke into a grin. She was excited to see a baby was in the store. “Oh” she exclaimed with joy… and as she got to where she could see him with his nasal cannulas and head shaping helmet, her excited “oh!” turned to “ooh” with a frown.

My heart sank.

She clearly didn’t see the beautiful fighter that overcame so much to be there that day. Instead, she saw what Owen wasn’t and she felt bad for what he wasn’t.

I don’t know, if on that day, I was able to articulate that it was pity that she was expressing, but I know I didn’t like the way it felt to see my son be the recipient of it. I was relieved that he was too young to see her looks of concern and feel her focus on what he wasn’t.

It’s important to acknowledge, I’m confident that this woman didn’t intend to hurt my feelings or belittle Owen. I have a feeling if I had politely let her know, she would have been honestly and profusely sorry. Instead of saying something to her, I walked away and chalked it up as our first lesson in what many special needs families have learned ahead of us; all too often the attitude in our society is to focus on what people can’t do, rather than what they can do. And the overwhelming response to what someone can’t do is, “it’s such a pity.”

Pity is exactly what Owen does not need – it will not help him. Instead, pity will enable Owen to feel bad about his circumstances. Pity will give Owen an excuse to give up when life gets hard. Pity will be a constant reminder to Owen that he is different – that, to some, he’s not “good enough”. Pity will prevent Owen from being all that he is.

Instead of pity, what Owen needs is empowerment. He needs to be empowered with the attitude that his being born a mircro preemie who has chronic lung diseases and brain injuries is not an excuse for him to not fulfill his dreams. Empowerment is given through a combination of hope, expert care and a world that gives him a chance.

We are very fortunate to live in a metropolitan that makes it relatively easy to get expert care. Minneapolis / St Paul has three nationally ranked children’s hospital systems; University of Minnesota Amplatz, Gillette Children’s Specialty Healthcare and Children’s Hospital and Clinics of Minnesota. Each of these systems works collaboratively and provides care for Owen. Gillette, the nation’s first hospital for children who have disabilities, has an office less than five miles from our house where Owen has therapy that empowers him.

Hope is another component to Owen’s empowerment that comes easily to him. He doesn’t know what he doesn’t have, but he has an innate drive to get what he wants. Owen’s is an attitude that fills many of us with hope.

If there is one thing that worries me most about Owen’s future it’s if he’s going to grow up in a world that gives him a chance – a world without pity. When Owen’s been able to go out, the looks of pity have been prolific. I know for Owen, and all of his preemie and special needs friends, to have their best chances, we need to help people understand that their pity hurts. We need to provide ways to let the world know that solutions, not pity, are needed.

It’s the moment in the grocery store, and the many similar experiences we’ve had since, that made the CurePity movement resonate so strongly with me. Championed by Gillette Children’s Specialty Healthcare, CurePity is a campaign that asks the world to sign a pledge promising to reject pity and to take action to improve the lives and health of children with disabilities.

I signed the pledge because what Owen can do is greater than what he can’t do. I am choosing to empower, not pity, my son and all children with disabilities.

You probably already know Owen’s story.

There is also Logan’s story.


And Lexi’s Story.


I bet you have some stories of your own too.

Won’t you please, take one minute to sign the CurePity Pledge? It doesn’t matter where you live, CurePity isn’t about one hospital system in Minnesota. CurePity is about an attitude of rejecting pity in our society and fighting to establish and protect the rights of people with disabilities. It’s about giving our children a world that sees what they are, not what they are not.

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