Lilypie Premature Baby tickers

Lilypie Premature Baby tickers

Wednesday, February 27, 2013


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  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  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” (  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?    


  1. Ugh. I feel this post deep in my heart. Thanks for writing about your fear. It helps the rest of us know we are not alone, and I hope it helps you release some of that fear.

    1. So glad you connected with this post; yet, sad that you have the same feelings. I hate for anyone to have to feel some of the things we do as preemie parents! But, like you said, it absolutely helps to know we are not alone! I read your blog too!!

  2. So, so well said. And thank you for sharing your blog! I look forward to catching up!