Exhausted

Just an FYI on Jack:  He seems to be feeling much better after this respiratory virus/infection.  He ended up with a terrible case of hives from an allergy to the antibiotics.  I don’t think he’s completely himself yet…seems more tired and more irritable, but he is breathing just fine.  

Holy Hives, Jackers! 

          I will apologize for this post, because I still haven’t found my focus that disappeared when Jack’s breathing became labored two weeks ago.  Jack’s chest x-ray left me feeling so defeated, yet I knew it wasn’t the possible pneumonia diagnosis.  While the hospital radiologist suspected pneumonia, his Pulmo NP didn’t (and there's no definite diagnosis anyway).  I think she thought it would make me feel better that his x-ray may not have shown pneumonia.  I thought it would make me feel relief as well.  I couldn’t wait to see that x-ray; I hadn’t seen one since the NICU.  But, seeing it, even with Jack starting to feel better, only left me feeling defeated.  Knowing that 30 months after his early arrival, his lungs still show damage from prematurity just made me so sad.  Sad really isn’t the right word for how I feel about it, honestly.  Despondent?  Forlorn?  Sorrowful?  None of those words seem sad enough.  I know, from the outside, Jack looks great and he’s doing awesome.  But that x-ray just proved that no matter how careful I am about protecting him and no matter how “healthy” he stays…his lungs still are not healthy.  I can’t “fix” his lungs, no matter how hard I try.  I know I’ve said more than once that age 2 isn’t a magic age for preemies, even though it’s presented as such from many in the medical field.  I thought that I knew that, digested it.  But, I also naively thought that this chest x-ray would show some miraculous healing.   It’s just not fair, that he didn’t get a healthy start.  And it’s not fair that his lungs haven’t healed yet.  It’s not fair that he may never be as healthy as he deserves to be.    

          Last week, I couldn’t put my thoughts into words nor my words into a blog post.  I was exhausted.  I could claim that Jack’s illness (whether it was pneumonia or not) exhausted me.  But, really it didn’t.  It was hard to see him having trouble breathing like that; something I really hadn’t seen since the NICU.  It was sad to see him so out of sorts and not his usual, silly self.  But, he was a good “patient.”  He’s got such a pleasant disposition and is such a sweetheart.   And he weathered this more serious respiratory illness rather well.  He even started doing the dishes, which has since become his favorite activity.   

He actually asks to do the dishes!

          But, after the chest x-ray, my brain was mush.  I couldn’t focus.  Strange for me, considering the last 2.5 years, my focus has been Jack and his health and development.  And I can usually focus enough to say something, anything about prematurity.  Those 112 days in the NICU, I focused on doing whatever it took to make him feel loved, even though I left him every.single.day.  After discharge and ever since, I’ve focused on doing everything in my power to keep him from getting sick, to give his lungs a chance to heal, to support his development as best I knew how, to offer him the more love than I could ever imagine every.single.day.  There was complete and utter exhaustion after discharge and during those days when there was never enough sleep.  But this time, my exhaustion wasn’t physical, I realized quickly.  But I also realized that I couldn’t pinpoint exactly what my problem was.  Lack of focus, for sure.   And then a friend asked if I was okay, and I gave an honest answer for once, “Just mentally/emotionally exhausted from the last two years!  I’m tired of being so anxious and afraid for Jack.”    I’m just tired of being afraid.  Tired of the fear.  

Listening to his own lungs with the stethoscope. 

          I am not exhausted by the daily laundry, the diaper changes, the playdoh playing.  I’m not tired of taking care of an energetic toddler.  I’m not tired of staying home most days.  Heck, I’m not even exhausted from the over 250 appointments Jack has had between all his specialists and therapists in the last two years.  What I am exhausted from is the fear and anxiety that comes along with prematurity.  Notice I didn’t say premature birth, because that implies that prematurity doesn’t affect anything after birth.  Wrong.  And I also didn’t say that I’m exhausted from the fear and anxiety from the NICU.  Because prematurity doesn’t end at discharge either.  This recent illness, albeit mild in the grand scheme of things, has helped me realize just how emotionally and mentally exhausted I am.  I’m not whining or complaining, just being honest about what prematurity can do to parents.  Jeff is exhausted too.  He saw a picture of us from just a few years back (before Jack) and said, “Wow, look at that energetic young couple.” We are not those people anymore.  We have been physically tired since the day I entered the hospital, no matter how much sleep.  We are mentally exhausted, something sleep doesn’t cure.  But, I’m so, so glad, that WE are exhausted from all that Jack has been through…and he is NOT!  Although, I will say this emphatically….it doesn’t matter to me if he never, ever remembers any of this…it is still not fair that he went through it.  Even so, I would do it all over again with the end result of a little boy like Jack.  (Although, I don't think it's fair to put another child through it...another post for another day.)  How I feel about prematurity is completely separate from how I feel about Jack.  Yet, the two cannot be separated and exist together in my heart and mind.  Jack doesn’t exhaust me, but his prematurity does.  I’m sure that one day, the division between the two will grow and the anxiety and fear will lessen even more.  But for now, 2.5 years in, it’s still very, very fresh.  I’ve learned from another preemie mom that if I say things aloud, it’s the first step in letting it go.   Here I go:  I’m anxious.  I’m afraid.  I’m exhausted from being anxious and afraid.

Watching "Super Simple Songs" while sick. 

          Most days, being with Jack can chase away any scared or overwhelming thought, but some days, the culmination of the last two years of anxiety and the anticipation of what the future holds…is just too much.  I was reading another blog, and the author wrote something about her “love being greater than her fear” (http://emptytofill.com/2012/01/06/the-weight-of-whats-in-my-hands/).  I hope I get there.  But, my first instinct was to say, “My fear is so great, because my love is so great.”  Guess I have some things to work on, huh?    

Flashback Friday: Featured

Jack's recent illness has led me to some interesting realizations that I'm working through and hope to post about eventually.  But for now, I wanted to let you know that Jack was featured in the Preemie Family February newsletter.  I was then asked to give an update with details on Jack's NICU stay, homecoming and up to today.  I was also asked to tell how this experienced changed me and whether I learned any lessons from the preemie experience.  I'm sure I could write a book about our journey, but I tried to condense it for the readers of Preemie World.  Thanks to Deb Discenza for giving us the opportunity to share our story thus far. 

Preemie World Update

My favorite NICU picture of Jack.  He was almost 4 weeks old here and weighed 2lbs 12oz (but appears much bigger). 

Flashback Friday: Outside

Jack, out for his first walk, March 19, 2011 at 7 months old.

I almost forgot to do a Flashback Friday post.  It's 9PM, so I have a few hours, yet I don't have anything profound to say about prematurity or Jack's journey today.  This illness of Jack's, while relatively mild in the grand scheme of what he has already experienced, has interrupted my normal thought processes.  But, I do keep flashing back to Jack's first walk outside.  Imagine waiting 7 months to be outside...to feel the wind and the sun, to see trees and clouds.   Jack spent his first four months in the hospital and then the next 3 months at home, only leaving for the many doctors appointments covered to protect him from the cold air, since he was discharged in the middle of RSV/Flu/cold season.  He was still attached to the O2 concentrator, 24 hours a day, but had just gotten off the NG tube when we went outside, just for fun!  I was so anxious to do something "normal" with Jack...just had to hook him up to a small O2 tank (not so normal, but do-able) and we were off for a walk around the neighborhood.  He looked SO adorable in his hoodie and spent most of the time licking his zipper.  I'm not sure he even knew we were outside.  But the fresh air did put him into a nice slumber! 

The little zipper licker fell asleep!

Since that momentous first walk, this little boy lights up the moment he hears the word outside and it was one of is favorite signs before he could speak!  He is always ready and willing to venture outside and would love to stay out all day.  This nasty, winter weather and all it's germs have both Jack and I looking forward to his "first walk" for Spring 2013.

Here's a few more of my favorite outside pictures of Jack, mostly for me to get myself out of the winter blahs:

Finally realizing he is outside, on a second walk.

Got to protect that precious face from the sun!

"What is that Mommy?  A tree?"

Our little swimmer

"Hey, are we outside again?"

"I'm free!"

Just learned it was time to go inside!

The Mayor of the 'hood

"OUTSIDE!"

Jack's been pounding the pavement ever since that first walk! 

Ugh...Pneumonia

     Once again, we interrupt my previously scheduled “Why I Blog” post, with…pneumonia.  Yep, our little guy has pneumonia.   A lung infection.  Exactly what we have been trying to avoid for the past 2.5 years.  Heck, he probably had RSV, the dreaded virus, and it settled into his lungs.  The rational side of me knows that this type of illness was inevitable.  The not-so rational side really hoped I could protect him from any more lung damage for a lot longer, if not forever.  I never wanted him to have to struggle to breathe again. The rational part of me thinks, “He’ll be okay.  He can handle this.”  The not-so rational thinking goes more like this, “Is this the ‘other shoe’ dropping?  Is this the time we take him into the hospital and he doesn’t get to leave?  Will his lungs be too weak to handle this illness? Is this the start of the trend of constant respiratory illness?”  If you’re the mama of a child with compromised lung health (asthma, BPD, etc)…you might be thinking that my irrational thoughts are pretty rational, all things considered.   

      What started out as a mild cold…a cold so mild I didn’t realize it was even affecting Jack…quickly turned into rapid breathing (tachypnea), retracting (when the skin pulls in and out between each rib with each breath, and you may be able to "count ribs"), high fever, loss of appetite, vomiting (just once), high heart rate, nasal flaring, and cough…all typical symptoms of pneumonia and many of the symptoms Jack’s pulmonologist told me to watch out for almost 2 years ago, after he was discharged from the NICU.  I knew when he didn’t wake up early, like usual, this morning and was pretty lethargic this AM, that we would be going to the doctor and possibly the hospital.  I checked his O2 sats and they were acceptable (89-92), so I stopped myself from packing a hospital bag.  I had faith…at least I think I did.  

The note from Jack's pulmonologist, reminding me of symptoms in the "danger zone."

     I appreciated that Jack’s pediatrician recognized that he would need a chest x-ray.  Jack, however, did not appreciate the hard plastic contraption he was to be placed into for the x-ray.  It didn’t happen and we found a different way to get the pictures of his lungs.   There was a small part of me that thought it would come back negative for pneumonia, or anything else.  Jack’s pulmonologist, after hearing all the details, actually said, “This is a good thing.”  And I scoffed, knowing exactly what she meant…that his lungs “needed” to be tested at some point.  She may be right, but I’ll never quite believe that and I’m not remotely comfortable with testing them.  Once again, I’m holding my breath, waiting to see whether my little boy’s lungs will pass this test. 

     I recognized today, that part of me wants to pretend that this illness isn’t happening.   I even attempted to go to a meeting at that very hospital that I fear he will return to…but turned around and came home.  (Yes, it’s okay for me to visit and volunteer there, but NOT Jack!)   But I can’t deny it when I watch his little chest or hear his huffing and puffing.  After those 112 days of unrelenting anxiety, I feel like I’ve had a life-time of worry (of that intensity) in such a short time.  Honestly, I feel like Jack maxed out his parental worry quota in the first four months and we shouldn't have to worry about illness ever again!  However, I do feel as though I'm better prepared to handle an illness like this, than I might have been just a year ago when Jack was newly weaned from O2 support.    

Our weapons, against respiratory illness:  thermometer, spacer, inhalers, antiobiotics, pulse-ox, stethescope...and lots of love!

     After those 112 days, we kept Jack exposure to illness limited, and there used to be a point that I knew if he got sick, I would never forgive myself for exposing him.  I didn’t think any trip to the grocery store or crowded place was worth an illness for him.  But we’ve relaxed on that just recently…and what do you know…pneumonia.  Part of me wants to stop “living” again and stay isolated like we had the past 2 years…but I “sort of” know that isn’t fair to Jack at this point.  It’s such a fine line…I feel like we are constantly teetering on that line, hoping to achieve the right balance to protect Jack’s lungs while also supporting his social development…both options are supporting his life, just in different ways.  I have talked with many preemie parents that struggle with this same issue.  This lung disease is a rough one…it’s not like a broken leg that can be casted.  The “cast” has been limiting exposure and isolation for over 2 years, but like a leg in that cast, things start to atrophy eventually, and I sure don’t want Jack’s social life to waste away.  When he was younger, all he needed was his family, but hanging with other kids is essential to his development too.  This boy loves other kids and he (and his mommy) need to get out of the house!  I cannot wait for this winter/cold/flu/RSV season to end.  

Happy Valentine's Day! (Jack's handi-work)

Flashback Friday: In Good Hands

Jack, in a nurse's hands, just before he was placed into mine for the first time. 

We had to leave Jack, for 112 days, in someone else's hands.  It was heart-wrenching.  Hearing from other's that he was "in good hands" did not alleviate my anxiety; it only made me want to shout, "But he should be in MY hands."  But what did soften the trauma, just a tiny bit, was knowing that many of the nurses who did care for him, well, their hands were the next best thing.  I was browsing through old NICU photos for Flashback Friday, and I noticed in many of our photos of Jack, there was usually a pair of hands touching him.  Often they were mine or Jeff's, but many were a nurse's hands.  

Hands, removing his mask to allow us to see Jack's whole face. 

And strangely enough, I can identify the nurse 90% of the time, just by her hands alone.  If you ever talk with a NICU mom, they will undoubtedly tell you that a nurse can make or break your day.  Each nurse connects differently with each baby and family, and some were better suited for our family than others.  Those parents will also go on to tell you how special many of those nurses are and how they feel like family.  We feel the same. 

The hands of one our most beloved nurses, who took special care of Jack in his early days and beyond.

I even wrote a letter to the NICU nurse manager after Jack's stay, expressing that very sentiment: 


 "I know while Jack was in the NICU, we came to you with our many concerns.  But we often forgot to acknowledge the wonderful nurses we met during his stay.  Although memories of a NICU stay, in any hospital I imagine, are fraught with fear, anxiety, and all the other “rollercoaster” emotions, our memories also include how blessed we were to develop these relationships with Jack’s special nurses.  A day doesn’t go by that I don’t think about one or all of these ladies and I always remind Jack of his “girlfriends.”  While I know they were all doing their job, and extremely well at that, and they interact with many patients and families, to us they felt like family.  Especially because they were with Jack, and us, for the first four months of his life.  I realized early on that the nurse Jack had each day really affected my mood and my anxiety level.  Apparently this happens to most parents, as I had many a conversation in the “pumping room” about how certain nurses mesh well with certain families.  That is not to say that one nurse is better or worse, but that certain styles and personalities will either mesh or clash.  While we didn’t really clash with any one, there were definitely some nurses who eased my anxiety and calmed our fears on many a day in our 4-month stay."   

Another set of special hands, Jack's OT. 

 I went on to give specifics about some of Jack's very special nurses and therapists.  I won't name them publicly here, because they'd be horribly embarrassed, for they are just "doing their job."  But what a special job it is.  They take care of the most fragile little ones and their often more fragile parents, devastated by this unexpected turn of events.  In those early, fragile days, their hands touched him more often than ours.  His first nurses always made sure that I was doing okay, in those days when I didn't know whether to feel elated or defeated, joyful or distraught.  They put tiny, tiny clothes on our little boy, just to give us a sense of normalcy.  They made sure we always felt like Jack's parents, even though we really were just guests who had to drive many miles, park in a parking garage, sign in, scrub our hands, and gown up just to see our baby.  They apologized for grabbing him from my arms, after he stopped breathing, even though we were just grateful that those hands that grabbed also saved him.  Their hands comforted him, comforted us, placed him in our arms for the first time, and captured special moments on camera.  Their hands secured him in his boppy, so he could get a better view of the NICU and inked his tiny feet for his first footprints.  Hands that taught us containment and infant massage and hands that encouraged us during first "real" baths.  Hands that made me feel like I could leave the NICU to get lunch or even take the afternoon "off."  Hands that dialed the phone to let us know Jack was okay, after a particularly rough "goodbye" one night.  And just when my NICU crazy really started to kick in, we were blessed with a nurse whose hands took care of many issues, both major and minor, that made our lengthy stay bearable. 

In a nurse's hands, for one of the many NICU firsts. 

We couldn't have survived without their guidance and care during a very traumatic time for our family.  We are more than grateful and I know this post does not do justice to our appreciation.  Guess we were "in good hands" after all.