Owen’s (Third) Letter to Nasal Cannulas

Dear Nasal Cannulas,

It was two years ago on Father’s day that Dad and I were in cahoots and we pulled the ventilator out.  Okay, maybe it was a scary accident to Dad, but I knew what I was doing.  I was through with that vent…well, at least for a week and then I got sick and needed it back, but that’s not the point… the point is, I know when I need help breathing.

Over the last several weeks, I’ve made it abundantly clear to Mom and Dad that I didn’t need help breathing anymore.  I kicked and screamed the minute you touched my face and I proved I can whip you out of my nose and on the floor faster than I can crawl away when Mom is chasing me through Kellen’s floor hockey practice (and that’s pretty fast, just ask any of the onlookers who were giving mom the “wow, he’s a handful” looks of sympathy…hahaha).

I made it as clear as I could to Mom that it was time to call the doctor to have my overnight study, but she’s got this fear of bad news…something about being afraid of jinxing positive momentum.  I mean seriously, she gets all cautious because she’s haunted by that first year, but I keep showing her in every way…I’m just not that same kid anymore.  I’m stronger now and this face is waaaayyyy too cute for a harness on it.  Those dang glasses are bad enough and at least they match my baby blues.

So anyway, this letter is getting a little drawn out…kind of like our two-year relationship…so let me put it to you as simply as I can.

I PASSED!  I PASSED!  Naa Naa Nuh Boo Boo!  I don’t need you!

Oh, and to your little friend pulse oximeter (that stupid monitor that mom punched a time or two…or more).  I quit it too!

Booyah!  It’s good to be a free man.

If you missed Owen’s previous letters to nasal cannulas, you can find them here and here.

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.

Our Experiences with RSV

In the preemie world, it seems that to many, RSV is a black box of wonder…you always hear about it, but really only know that you don’t ever want your kid to get it.  Unfortunately, I’ve, somehow, drawn the short straw and have not only experienced RSV with one preemie, but with both of my boys so I thought I’d share my experiences and mom-to-mom give you a few things to remember about RSV.

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But, Preemies have to get Sick to Build their Immunity, Right?

For some, this post may have reached the point of beating a dead horse, but I’m going to post about it because it’s a question I’m starting to get asked now that Owen’s been healthier. We are still a few weeks from the official start of the cold and flu season, but Owen met with his Pulmonologist on Thursday so I wanted to post it while her thoughts were still in my mind.

To the other preemie moms that are reading this blog and getting the same questions (every single one of you, I know, I follow Life After NICU too!), Dr. Laguna has said we are all free to quote her until we’re blue in the face (well not literally, the Pulmonary folks, and Medical people in general, take exception to that analogy).

So, here’s the typical conversation with fictional character, Imelda:

Me: Cold and flu season is just around the corner, we’re going back into the bubble in September.

Imelda: September, that seems too soon, isn’t that a little overkill?

Me: Once school starts back up, germs seem to spread. We will increase caution in September, with full lock down starting as soon as we get word that the season is in full force. As always we will be very strict on hand washing and limiting kids in our home this fall and winter.

Imelda [in all-knowing voice]: But, if he doesn’t get sick, he’s never going to build up his immunity. It’s good for kids to get sick every once in a while.

What I often want to scream at this point in the conversation is, “He’s STILL on oxygen!!!!!” immediately followed by, “we spent FOURTY-FIVE days in the hospital with Respiratory Illnesses last cold and flu season!!!!!!!!!!”

But, instead of getting all snarky, here’s the Pulmonary approved response (paraphrased).

It is true, for typical babies 6-8 illness per year is expected and normal. However, this is not about building immunity – it’s about lung health. All preemies, and especially those who spent an extended time on the vent, are an exception to that rule. These babies, even when they are acting healthy, have damaged lungs. Every illness that gets into the lungs [anything that gives you the “sniffles” or “a little cough”] damages the lungs further. Every illness increases their chances of hospitalization and prolongs their time with chronic lung disease. We DO NOT want these babies sick! Preemie parents aren’t paranoid – they are right

Imelda typically has one more question: So, how long does this last?

Back to me, on this one: It’s really case by case and should be discussed with the child’s doctors. Some kids had relatively healthy courses and can spend their second cold and flu season in general population. Other kids, like Owen, will need at least two full winters in as much seclusion as possible. We will try to be slightly lighter with Owen this year by letting him go to some in-clinic therapies through the season. However, if he starts heading in the wrong direction, we will go back to only in-home therapies. Even his Pulmonologist doesn’t want to see him in clinic unless absolutely necessary this winter. Next year is still a big question mark, it all depends on how this year goes.

If you’re still not convinced, specifically in Owen’s case, he has three strikes against him.
1)Bronchopulmonary Dysplasia (BPD) – The lung disease that is typical in preemies and is the reason that Owen requires oxygen. Owen is considered to have very severe BPD.
2) Asthma – A second form of lung disease that causes the airways to swell and narrow. It can be triggered by allergies or illnesses
3) Tracheomalacia – a condition that makes the windpipe floppy to the point of collapsing when it’s only supposed to dilate and contract slightly. Tracheomalacia is especially pronounced during coughing or hard crying.

Each of the three factors above, increases a person’s chance of being hospitalized when suffering from a typical respiratory illness. We learned this spring that the three can work together to really wreak havoc. The good news, is we know more this year so can better treat Owen and he has grown and gotten healthier. So, we absolutely do not expect another 45 days this year, but it won’t be surprising if Owen is hospitalized a time or two, even with our precautions.

Okay, I’ll but my soap box away for now. Thank you for reading and thank you in advance to everyone that stays friends with us through another winter of saying “wish we could” to invites. Also, please keep inviting us – babysitters aren’t out of the question!

A Wean, A Wean!

We’re posting a little late today – it’s been a busy day, but all in good ways.  This 75 degree weather is wonderful!

After what felt like the longest slide backward this winter, Owen’s Pulmonary doctor has given orders to reduce the amount his diuretic he is given by 25%.  This is the first step since January that is working towards reducing from his baseline Oxygen support.  We still have a long way until Owen’s warning to Nasal Cannulas can come true; he has to completely come off the diuretics before she will start weaning his oxygen from his current 1/8 liters per minute.  Then he will have to go to 1/16 and, maybe 1/32 before he’s off.  If all goes really, really well it will probably be a few months.  That timing puts us right back to cold and flu season and if he has another winter like last then we could be looking at much longer so I don’t want to get too excited, but it is a nice sigh of relief to be making progress from the baseline he was last at six months ago.

What do diuretics have to do with an oxygen wean? Children with Bronchopulmonary Displacia (BPD), the form of Chronic Lung Disease that plagues preemies, often struggle with edema, or water retention.  That excess fluid can get into the lungs making the lungs not distribute oxygen as well and can also create blockages that make breathing more work .  Diuretics help rid the body of excess fluids so it doesn’t collect in his lungs.  Because he’s been on diuretics his entire life, Owen’s body has become dependent on them so he will need to wean slowly, versus just stop in one fell swoop.  Before this new order from the doctor, Owen’s been on the same daily dose of diuretics as when he left the NICU and he’s nearly doubled his weight, so in reality he’s been weaning just by growing but this is the first active reduction is dose.

I have evidence that Owen still needs his diuretics, I recently woke up in the morning to find the full diuretic syringe next to his bed – I had mistakenly missed giving it to him the night before. Just missing that one dose impacted his day.  He required a neb, which he hasn’t been requiring lately, and I could see mild edema when I changed his diaper.  I’m not sure many others would have noted the mild differences, but if it’s noticeable to me after missing one dose, I know that his body is still depending on the diuretics to help his breathing.

If you want a fuller description of BPD, here is my favorite explanation in lay terms.

Owen’s Open Letter to Nasal Cannulas

Dear Nasal Cannulas,

It’s hard to believe it’s been a year since we met.  I was so excited to meet you.  I had heard about you.  Everyone said how gentle and kind you were and that you gave so much freedom.  After a nine weeks with a couple different ventilators, I needed someone who was not so oppressive and would allow me to more freely express myself.  Those ventilators were so… invasive and controlling.  They literally made me sick a few times.

When we met a year ago today, you were exactly what I needed.  Compared to my last couple relationships you were so gentle and kind and gave me the freedom to snuggle with my mom and dad and finally, my throat stopped hurting.  Around you, my mouth wasn’t dry and you didn’t force me to always have my cheeks puckered and ready for a kiss.  Your tapes were so much softer and didn’t bruise my skin.  Here’s a picture of us on that first day we met.  We looked really happy together.  Content actually.

Owen at 33 weeks, his first day on the Nasal Cannulas. June 22, 2011

When we first met, I never imagined we’d get this serious.  I thought you’d be a few month fling – a rebound, if you will.  But here we are a year later.  You’ve helped me in numerous ways and I’ll always be thankful for what you have given me.  I’m really starting to come into my own and much of that is because of you.

With all that said, it’s a little hard to say this, but I…uhm…it’s just that…okay, here goes…I don’t think you’re the one.

Yep, I’ve said it.  I’m just never going to marry you.  You’re welcome to stick around until we get everything with my meds straightened out, but after that, I think we should go our separate ways.  I know what you’re thinking, I went back to the ventilator a few times after we broke up, so you still have a chance.  Well, please don’t take this the wrong way, but I don’t want to ever see you again once we’re through.  I think we should just, you know, make a clean break.

“Why?” I am sure you’re asking.  Well, it’s not all you, it’s partly me too.  When we met, I was still pretty young – too young, some would say.  I just didn’t understand what I was getting into.  I’ve learned that although you’re nothing like my past relationships, you still are pretty oppressive.  Your tapes have started leaving red marks on my face and when your cords get caught up you yank my head.  (I know you blame my mom for that, but Noooo, she told me, it’s your fault and everything mommies say is right.)  And now that I’m starting to roll, you’re always in the wrong place.  Anyway, you’ve come with a lot of baggage and I just don’t want to deal with it all for much longer, so I think you should start looking for a new home.  I’d suggest it be far, far away – Siberia maybe, because, really, I don’t think we could ever be friends after all that we’ve gone through together.

One last suggestion for your next relationship – you’re not a bad teething chew toy.  Maybe, you should consider that angle for the future.

Owen finding a more appealing use for his nasal cannulas

Sincerely, Owen

PS – I am sorry for the public break up, it was a Big Country, KC Cowboy named Franklin who gave me the idea.  He’s got a couple really cute daughters my age, so I thought I might want to listen to start showing some respect in case I get to meet these beauties one day.