Sunday, August 5, 2012

Life's First Breath

Yesterday was a BIG DAY for the P-nut. Not only did he officially make it to The Promised Land (aka the B-Side Step Down unit), but he also came off oxygen, we hope for good!
Eleven weeks old!

His new room feels ridiculously small after our last one, and it has a potential for a roommate family (slightly awkward!).  It DOES have a TV, a bathroom, a dresser, 2 sleeper chairs, and a window.
Room with a view! (and a Starbucks cup, to make it feel homey)

Maybe it's not the best view, but you know what... Parker loves the sunshine!

We are happy to be there, but the happiest part of the whole room is this piece of paper:

When we came for our NICU tour shortly after finding out about Parker's CDH, I fixated on these green papers.  Eileen said that once the green paper showed up, you were one foot out the door.  At that point, we didn't know if we would ever see the green paper.  I adore checklists.  Concrete goals make me glad.  I love you, Ticket Home!

I sat there yesterday, holding my sweet little baby boy, and for some odd reason could not stop the tears.  He is BREATHING.  Unassisted.  After eleven weeks of life. It's not TECHNICALLY his first breath, as he cried a few times when he was first born and has had two off-oxygen trials this week.  Still, as I sat there watching his tiny scarred chest rise and fall completely on its own, I got hit full in the face that every breath he takes is a gift from God.  There's just no two ways about it.  Weepy weepy weepy.  I kept singing the last verse of "In Christ Alone", which is one of my guaranteed-to-cry-during-church songs. 

From life's first cry to final breath,
Jesus commands my destiny.
No power of hell, no scheme of man
Can ever pluck me from his hand.
'Til he returns, or calls me home
Here is the power of Christ I stand.

(Looking back, I 100% was rearranging the words "cry" and "breath" to fit my needs, but it worked anyway.  Like it mattered, as I was a tonedeaf person attempting to sing whilst crying and trying her best to not be overheard and mistaken for the fire alarm.  Parker didn't care.  He likes my singing, God bless his sweet soul.)

Pretty sure I need this for his room!

He did great off his oxygen overnight, and I think he just might be out of the woods from a breathing standpoint.  All that remains to get us the heck out of there is to get off of Ativan and to do our best with eating.  I am pretty sure we'll be going home with his feeding tube, but I have every intention of being rid of it ASAP.  He has no physiological problems keeping him from eating-- he has not-too-bad reflux, but that's it.  No puking.  No choking.  He's just a lazybones and he doesn't really know what it's like to feel hungry.  He CAN eat (I got him up to 70 ccs orally at one feed), he just chooses not to all the time.

I did my first round of NG tube insertion today.  (I'm sorry, but what on earth is that doing on YouTube?  How did that sweet man get roped into volunteering for that??)  It was not my favorite thing, but honestly not awful.  Parker doesn't love it, but he's over it in less than 10 seconds.  There was much hand-flapping on my part, coupled by an inexplicable desire to sneeze.  Now that I've done it once, I feel fine practicing a few more times before being responsible for doing it at home.  I would prefer, however, for that to be a temporary situation! Get ready, P-nut, 'cause there's a storm coming.  Home will not be a place of rest and relaxation.  You will be enrolled, upon arrival, in Mommy Boot Camp to kick the NG tube to the curb!  Why?  Because this is just too adorable for words:

Sweet sweet boy with no tubes!! (this was during a tube change today)


  1. P is a GORGEOUS baby! yay for being so close to going home!

  2. Congratulations on making it the room with a window! That alone in NICU world means you are closer to going home. He is such a precious little guy. Continue to hang in there, it all gets easier and is so worth it for moments like these. May God continue to bless you and your sweet family!

  3. Balls to the walls Parker. We are so proud of you. We will keep praying. Hopefully hte next 11ish days go quickly.

  4. I recognize those tears...there's such a relief in knowing you will soon be taking him home. Parker's not the only one breathing easier these days :) I love that sign- I think I need one too!

  5. Green paper ... green light ... GO, GO, GO!!!!! How far you have traveled; now you are ALMOST home! Happy trails, my friends. Happy "Mommy Boot Camp, Parker :)!!! May these last few hospital days fly by!!!!!

  6. Yay!!! So happy Parker is doing so well!!!!

  7. This makes me so happy... I do hope you will one day publish your writing!

  8. I love your blog!! So pleased to see your little Parker doing so well!! Looking forward to the day you say he is coming home! It's scary, yet magical at the same time! I'll never forget the day my grandson came home.
    Kerry-CDH Granny xox

  9. So wonderful!!! Yipee for the B-side, on the way to the home side!!!! I have chills and can't wipe the smile off my face. Still rooting for you from NC! (mom to 7yo survivor Jessica who had Dr. Parker for repair at CHOA)