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 Little Things

There are certain milestones that gets nearly every parent excited. Like this one:

I could watch that video all day long.  That sweet voice and I love how he puts his hands over his face when I show my excitement.  Even better, when I do replay it (over and over and over) he says, “mama”

But sometimes, the little things mean just as much.  Like this:

truckThere is so much in this picture that makes me proud of Owen.

  • Look at the way he’s sitting.  Stretching across those belly scars that prevented him from sitting independently before he was 21 months old.
  • He’s using the toy appropriately.  It’s not in his mouth.  He’s not solely focused on the buttons that make noises and lights flash.  He’s pushing the truck forward, like a real truck would drive forward.
  • Speaking of those buttons, that he does occasionally push.  They are tiny.  To make them work, Owen has to point one isolated finger to softly jab the buttons.  You can’t see it in this picture, but that is some beautiful fine motor achievement, Little Boy!
  • He’s playing independently.  I did not pull the toy out and initiate the play or show him how to use a truck.  Owen found the truck and started playing by himself and decided for himself what the appropriate use of the truck was.
  • When I did sit down to take this sweet picture, Owen pushed the truck towards me.  He was initiating that I play with him.  He can play alone, which is important for his independence, however, he also has social desires to play with someone else when there is the opportunity.

I will watch the “mama” video 100 times with a huge, proud smile on my face, and I have the same pride when I see this picture of a little boy playing with his truck.  These, seemingly, small milestones, are just as important because they are the foundation of the next big thing to come.

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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

When Problems Don’t Stink

Whew, Owen is down for his nap.  It’s been a busy morning!  He’s truly on fire lately.  I think he’s starting to live up to the red-head stereo type.  B-U-S-Y!

Busy is actually the way that only a mother could say it.  It’s kind of like when Grandma Sandy remembers Kyle’s teen/college years as “he had fun.”  I didn’t know Kyle during those years, but the stories I’ve heard, definitely sound like fun.  I’ve also nearly cried tears laughing so hard at the mullet pictures.  Yes.  Mullet.  Business in the Front, Party in the Back.  Minnesota Mudflap.  Hockey Hair.  Whatever you want to call it, that God-Awful 80’s do (that apparently was still cool in Kyle’s part of Minnesota in the mid-90’s).  I’d love to post one of the pics on here, but Kyle would be mortified.  I mean really, isn’t that part of what we bloggers are supposed to do?  Mortify our husbands in the most public, shareable way possible?

Oh, that’s right, that’s not the theme of this blog.  This blog is about celebrating the small things that make the way into amazing things.  For Owen, being “busy” (always) is pretty amazing.  We had a joint PT/Speech session and an Early Intervention with PT session this week and everyone is so excited about the things Owen is doing right now.  Fun, fun stuff.  Busy stuff.

Like opening doors.  Nothing is sacred…he can get into any room of the house, including bathrooms.  Joy!  No, seriously.  Joy!  The balance it takes to reach on your tip toes and open a door.  The ability to stretch through the scars covering your core to reach waaaaay over your head and pull down a lever.  The curiosity to explore and cognition to remember what’s behind that door.  The fine motor skills to grasp and pull.  Child proofing never felt so good!

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There is also a lot of climbing into the dishwasher and pulling out the drawers, silverware, plates and pans.  The help with the dishes can be a little annoying…for about two seconds…and then I think about the fact that he’s interested in helping.  Wants to pull things out of silverware trays AND put them back in.  Traversing a BIG step up.  Stretching his whole body as he pulls open and pushes shut those relatively heavy drawers.  It’s pretty hard to stay annoyed.

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And then when I do remove him…he does this!  A temper tantrum.  As in, thoughts and opinions about how he wants to spend his time.  He is learning to negotiate and communicate his wants and needs.  And seriously, that sad face is pretty hard to resist.

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I’ve already told you about this type of busy that Owen has started to be…but here he is caught in the act of disconnecting is tubing from the O2 tank.  I posted this picture last night on Facebook and opened it up for captions.  Click the link to add your suggested captions and like your favorites (you don’t need to be on FB to see the captions, but you do need to have an account to comment or like).

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What I can tell you for sure, not all problems stink.  Owen is keeping us busy and it’s nothing to do with his health.  I love these problems.  Love them.

Anyone else having some problems that you love that you want to share?

Before I go, I’m feeling a little guilty about telling you about Kyle’s mullet.  Not guilty enough to delete it before hitting publish, but guilty enough that I suppose I should add in some self-deprecation as a show of good will.

You want to know the worst kind of problem?  When you didn’t realize that this was a problem.  Ahh, the hat, the bangs, the perm.  The eyebrows.  (Yes, those eyebrows do deserve to be their own sentence.)  The MC Hammer-inspired, tight on the bottom and baggy on the top pants.  If it weren’t for the buttons, I’m sure I would have tight rolled them.  The serious, look-out-the-window-profile-pose.  1989, I’m glad you’re history.

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On that note, enjoy your weekend!

A note:  I’ve been asked if Owen knocks his Oxygen tank over.  The answer is, no, once he became mobile we started laying the tank down so he couldn’t pull it on top of himself.

Owen’s (Second) Open Letter to Nasal Cannulas

Dear Nasal Cannulas,

Well, here we are…still.  I wrote you that letter way back in June letting you know that I really appreciated all that you’ve done for me but this isn’t going to be a long-term relationship.  I mean, I know we’ve been together longer than most, but I made it clear, this isn’t going to be a permanent situation.  It’s starting to feel like we’re Jake Gyllenhaal and Heath Ledger’s Characters in Brokeback Mountain and you just can’t quit me.

Just to be really clear.  I plan to quit you real good.  Well, you know, as soon as the doctor approves it.  Yep, I hear the word and you’re out the door.  Or… at least in the backroom so you can be there in case I get sick and need your help.  I won’t jinx anything by sending you completely away.  (My mom’s really superstitious about these things.)

So, I’ve been thinking about it a lot lately and I came up with an idea.  You know all the stories of people in Hollywood having fake relationships for PR reasons?  They aren’t really dating, but they pretend to date to improve their image?  I’d like to suggest that we take that route.  I don’t want to jinx myself by completely getting rid of you too soon (plus, the Pulmonologist thinks she gets a say in these things) I know you’d like to stick around with a hot number like myself for as long as you can, so for both of our sake, we’ll just pretend to be together for this last stretch.

Here’s how it’s going to work:  When we know we’re going to be around the paparazzi (I really have to talk to Santa about that darn camera he got for my mom), we’ll act like everything is perfect.

Here we are looking happy as can be at the Playroom Premiere.

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Maybe a little off-kilter, but we’re looking pretty great at this show of mine.

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And I’ll even add in a few of those fake, “No, no, don’t take my picture” type poses (note that perfect placement, wink, wink).

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But when the paparazzi isn’t around, I’ve got some other ideas for us.

This is a really good trick, because if people don’t look close, they might not even notice you’re only in one nostril.  The fact that I’m pretending to eat…and making it look like I enjoy it, is an added distraction to what’s REALLY going on.

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There is also the around-the-neck trick

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Or, around-the-forehead (blurry shot, but the dang paparazzi got it with her iPhone.  Those iPhones are dangerous for people in the public eye)

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Another good one is, just-over-one-ear

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At night when we’re sleeping, there are the platonic cuddles.

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And then, for those moments when the paparazzi just can’t seem to stay away, I’ve always got this little number up my sleeve (dad mentioned that next time I do this, I shouldn’t leave personal artifacts behind – hey, I’m not even two!).

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So see, I really think this is going to work.  We’ll show up at the doctor’s office and any public outings looking like we follow the rules, but when I’m running the show…just feel free to keep your distance, okay?

Thanks, love-ya (note:  that was not “I love you”, that has a very different meaning)

Owen

A note from the Editor:  As Owen calls out, his mom is very superstitious about these things.  It should be made very clear that the above thoughts are Owen’s thoughts and Owen’s alone.  Mentioning life without nasal cannulas at some unknown time in the future is not reason to be jinxed with an illness that would set Owen back further and extend his time on nasal cannulas…so blogger jinx, stay away!  Thank you.

A note from the Paparazzi:  It should me noted that after taking pictures of the evidence of Owen’s transgressions, I’m always sure to follow the doctor’s orders and replace the cannulas in his nose.  I’m one of those honest, paparazzi.  Paparazzi jinx, also, stay away.  Thank you.

The real meaning of RSV

Kellen had his four-year well visit today.  I asked the doctor if he thought it’d be okay for Owen and I to take Kellen into school again, and I got the, “that doesn’t make me super comfortable, ” look.

Flu is on a downward trend, but still prevalent.  RSV is prevalent and still hasn’t peaked.

Boo Hoo.  Self pity party.

I really need to stay off Facebook for a while.  I get so jealous when I see so many other preemies out living normal lives.  I’ve gotten pretty good at not comparing Owen to the general population, but I sometimes can’t help but look at other preemies who have had tough courses and do a little comparing.  I know it’s not healthy and I don’t dwell on it much, but I have my moments.   It stings a little to see them doing things developmentally that Owen’s not yet, but what really bothers me is when it feels like we are the only ones who have such a tight lockdown.

Let me lick my wounds for a moment.

Owen didn’t even get to go to his brother’s birthday party.  I’m not sure who that makes me more sad for.  Kellen’s first question when I told him he was having a pool party was if Owen would be able to go.  I know he’d love to play in the pool with his brother.  Owen would have liked it too.  He’s such a social guy and the world deserves to be warmed by his sweet smile.

Last week I even canceled a well visit for Owen because I didn’t want to take him into the germ-filled clinic.  His doctor supported the decision.

I know isolation this time of year is the best thing we can do for Owen.  We had even tighter lockdown last year and still had nearly 50 days in the hospital due to respiratory illnesses.  Most of that was RSV related.

Can I tell you how much I hate those 3 little letters?  After seeing blogger friend, Hipster Hausfrau have both of her kids admitted to the hospital for RSV over the weekend, I had enough.  It was the Hasfrau’s birthday the day they got admitted…Happy Birthday, Leda!  So, in honor of the 8 days we are 35 together, I renamed RSV.

Sometimes there is no nice way to say it.

Sometimes there is no nice way to say it.

I also have a name for flu, but I figure there were enough f-bombs slung around during the Office Space clip yesterday.  I want to keep my PG rating.

Tangential thought, wouldn’t it be great if we could go Office Space on flu and RSV?  I’d get some real enjoyment kicking the snot (literally) right out of those viruses.

So, fellow preemie moms sticking to your isolation plans.  Today, I salute you.  This sucks, but we’re in it together. I send you hugs of support and hopefully gave you a little smile today.  Need a space to vent about being stuck at home…my comment section is open.

xoxo

PS – If you’re like me and love statistics (when the math is performed by other people).  Here is the link to the CDC RSV tracker.  Click the state to find your area.

Medical Anxiety: Him and Me

Last spring, after spending almost 50 out of 90 days in the hospital, I often forced our way out before the doctors were volunteering discharge.  I also often refused the home nurse visits for follow up.  I was done.  I was in a dark place with medical workers and unless it was the Synagis nurse or Early Intervention, I didn’t want them in our house.  Seriously, a home nurse come daily to weigh Owen?  $200+ a visit?  7 days a week?  No, thank you!  I’m quite capable of weighing my child.

And that is how we became the proud owners of a high quality baby scale.  It pretty much collects dust now, but there was a long time that I weighed Owen daily to see if he needed PRN (as needed) Lasix (strong diuretic).  I keep it under our coffee table and have recently come to the realization that it’s Owen’s version of a monster under the coffee table.  He’ll be crawling around and happily playing and suddenly see the scale and start crying.  Sometimes he pushes the music button on the scale and will simultaneously cry and shake his head to the music – it’s both adorable and heartbreaking.

Why is he afraid of a scale?

Because getting weighed is the first step to all appointments medical.  He cries at the scale, screams at the stethoscope and nearly climbs the wall if you try to take his blood pressure.

Yesterday the Synagis nurse came to our house and it was the first time where he was apprehensive the minute he saw her.  He smiled at her, but it was more of a, “if I give you a nice smile, will you please not poke me?” sort of smile.  He finally warmed up to her and then she gave him his shots (big kids get two).

He screamed so hard he started retching.  I knew it would happen so didn’t feed him before she came.  Even on an empty stomach, he still retched horribly.  It didn’t last too long, but it’s also longer than the typical response to the shot.  Owen clearly has medical anxiety.

Home is always better than in the clinic.  In the clinic he hits the scale and works himself into such a fit that he finally falls asleep in my arms.  Even asleep, as soon as the door opens and the doctor or nurse walks in, he starts crying.  Mind you, not a word is spoken, just the door opening and it starts.  The exam begins and the hysterics start all over again.

A hospital stay is even worse.  I’d give some serious thought to making a deal with the devil to never have Owen admitted in the hospital again.  It’s excruciating for him and for me.  I do not exaggerate, by much, when I say it’s torture.

His fear is palpable as I try to give him a reassuring smile.

But the truth is, while it’s happening I’m thinking, “I’m putting him here.  I’m holding him down as they do these things to him.  The person he trusts most.”  (And I’d never let anyone else do it).  Even still, when it’s all over, it’s me who he clings to … a cling and searching eyes that say, “please, don’t let that ever happen again.”  His lip droops in the sweetest, saddest way.  As we leave, his eyes search with fear for what’s next and when we get to the car, he visibly releases his tension and almost immediately falls asleep.

It doesn’t matter if we are going for a routine check up where there are “no hurts” or for something more invasive.  Nearly every doctor appointment is the same.

The one exception; a physical medicine and rehabilitation appointment.  He was happy as could be, do you want to know why?  The nurse is a friend of mine.  Knowing his medical anxiety, she decided to not weigh him.

I hate that scale, too, Owen.

I’ve moved the scale from under the table.  For now, it’s under the bed in the guest room.  But one day, when I’m really sure we won’t need it again, I’m going Office Space on that thing.  Would it be inappropriate to let Owen help?

For those of you who are not Gen X’ers and don’t know the cult classic Office Space, below is a little clip.  (And if you are a Gen X’er, nod your head and smile.)  Warning:  R Rated clip for heavy use of profanity.

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.

 

Flu-a-phobe

It’s official, I’m a flu-a-phobe and I’m not ashamed.

I’ve been apprehensive all season, but this headline did it to me; Minnesota Health Officials: 27 flu deaths this season. 23 of those deaths were last week.  Just in Minnesota!

That’s it, I’m done. Quarantine.

Then, I picked up Kellen from school and found out that his classroom has two confirmed cases of flu.

Ahhhhh!

I didn’t send Kellen to school today. I figure it wasn’t very wise to knowingly send him to a place where there was confirmed flu. I’ll feel out next week as we get there. It’s not worth the risk.

We have also made arrangements with Kellen’s teacher that we will come 15 minutes late and pick up 15 minutes late so teachers can bring Kellen to the door. That way Owen can stay in the car and will not be going into school for direct contact. It’s really nice of Kellen’s teachers to agree to this. I know they are busy and it’s hard enough managing a bunch of 3 and 4-year-old kids without little field trips downstairs to get Kellen. We are lucky to have such a supportive school.

Last night I went to Target and didn’t take off my gloves the whole time I was there. Thankfully it was raining (yes, in January, and then it all froze) so not many people were out. Had there been a bunch of coughing, I may have been that person who left a full cart of groceries and high-tailed out of there.

Healthy thoughts to everyone! I’m off to watch Cars with Kellen while Owen naps.

Here are pictures of the boys trying out the Wheat and Egg Free pancakes. There was a slightly different texture at the end of the chew, but the flavor was great and the texture was not that noticeable.

 

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