Friday, February 24, 2012

A Night With Killian

*Warning: melodramatic musings to start in 3...2...1" 

Yesterday was rough for me. I got a whopping five hours of sleep (combination of excitement and stress), worked a full day and then took a three hour flight from Florida to Tennessee. I was spent. But all of my exhaustion went straight out the window the second the wheels hit Nashville ground.  

Lindsey (who looks amazing btw!!) picked me up from the airport. We giggled and caught up as we drove to the airport, frantically trying to get in before visiting hours were over. Visiting hours? "But don't they know who I am? I'm KILLIAN'S aunt!" :)

As Lindsey and I got off the elevator and onto the NICU floor, it felt like I had never left. Why is it that time stands still when you love a sick baby? And everything was different, but the same. 

I sanitized my hands, walked down the long hallway, signed in/got my badge, turned the corner and there it was...a room with adorable laminated letters cut out and glued to the outside- "K-I-L-L-I-A-N." I swear I felt like I stopped breathing for a second.

I turned the corner and saw THE most precious baby, my sweet little nephew, with his eyes wide open and his chubby  arms flailing, almost as if he was saying, "Hi Aunt Layna! Please don't sing to me like the last time you were here. It hurts my ears!" :)

I CANNOT tell you guys how blown away I was. This is not the same child I left more than four weeks ago!!! Pictures don't do him justice.

For one, he's fat! Just kidding, but he looks healthy. His coloring is so pink and perfect. Of course his mama, a hairstylist by trade, always keeps his signature faux hawk in check. But the the thing I was the most blown away by were his eyes! 

For the first time, I saw him alert, like really alert. As they come down more on his pain medication we get to see glimpses of his sweet personality. Because he's intubated, it's almost like he's learned to communicate with his eyebrows. "What's that noise?" or "Hi there! Happy to see you!" I know the doctors have said they're almost positive he'll have development problems, but they have to be talking about another baby because the one I saw last night knew exactly what was going on! :)

Also, it's nuts how less fragile he seems. Lindsey just moves his legs, touches his hands and strokes his head without even thinking anything of it. When I left the last time, we were all scared to touch him for fear he'd break. Not any more!

Lindsey and I are back at the hospital with him right now and this is what's happening (in real time!):

  • They are currently doing an ECHO to check his heart. Because they've been coming down on his nitric, they want to see if there is any change in the pulmonary hypertension. 
  • Our prayer is that there is IMPROVEMENT in the PH so they can continue to wean the nitric. 
  • He's currently at 10% on the nitric (started at 20) and putting up wonderful numbers, so we're really really hopeful.
  • He's still holding his own off all blood pressure medication!
  • They weaned his versed (anti-anxiety) more today, but are holding on weaning any more morphine for the time being.
  • He continues to tolerate his feedings well and now weights 9lbs 14ozs! 
  • And he is the most darling baby boy I've ever seen! 

He's resting now, but the next time he's up I'll try to catch some video! Hugs to you all! Keep praying! 
Aunt Layna
Killian's Social Media Coordinator 

Killian has been fighting - like a champion! - for his life since he was born. Because Killian's family is so spectacular; their friends decided to create this website in their honor to help in any way possible.

We are overwhelmed by the amount of people who have asked for an avenue to help Killian, Lindsey and the family. Any donation made below will go to help pay for food while staying in the hospital, gas back and forth, travel for family and the general care Killian will be receiving beginning on the glorious day he leaves the hospital!

All donations go directly to Killian's care and the care of his family. Also, ten percent of all money collected will be donated to Cherubs, The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support. The paypal donation account was set up by a friend, Liz Wolfe, whose name and email appears on the PayPal page. Liz manages all donations with the support and oversight of Killian's aunt, Layna Lambert Dugan.
More about CDH from CHD Support:
CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive. The cause is not known. Over a half million babies have been born with CDH since 2000. CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research.

1 comment:

  1. My eyes are leaking. I cannot tell you how very happy & excited I am for you all.

    I pray each morning & night & sometimes in between as I never want another family to suffer the utter despair that we have.

    God Bless You All Always!

    My daughter always says of Liam (our Angel CHERUB) that these babies have the wisest eyes. I truly do believe this as those wise eyes seem to look right through you.

    Many, many prayers, positive thoughts & blessings always,