Tuesday, January 24, 2012

Profound Things My (20 Year Old) Sister Says

Killian update as of 10 minutes ago:
  • At one point, Killian started to desat (meaning his numbers were dropping) so they put him back on 100% oxygen on the ventilator just to be safe. 
  • He is now back down to 66% and doing okay with that. Not the best, but no pain no gain right! We've got to work his little body out a bit, if that makes sense. 
  • He's completely off blood pressure meds! Whoop whoop!
  • The docs have decided to go ahead and start him on the blood thinners, hopefully breaking up the blood clots in his brain. 
  • They had to change his "port" from his right hand to his left hand last night b/c the other one was leaking. You know in the pictures where it looks like he's wearing a boxing glove? That's what they moved. 
  • He's still a little swollen in the face, most likely from the EEG hat he's wearing. 
 Keep praying and sending good vibes for our guy. While we do our best to celebrate the tiny victories, we have to remember he is still a very sick little boy. So don't let up!

Witty narrative starting in 3...2....

I'm sorry, maybe I'm bias, but I think my little sister might be one of the most incredible humans walking the face of the planet. When most people would tuck tail and run, she stepped up to kick some CDH butt!!

Since the day she found out Killian had CDH she has studied the condition mercilessly, learning so many terms that she gives the nurses a run for their money. She also has protected this baby like a lioness, a selfless lioness. When the pressure builds, she remains calm. When negative energy or people try to bring her down, she simply prays. And when all of us begin to get discouraged, she lifts US up. I wish you all could know her. She also has not left Killian's side except to go to church, run home for a change of clothes and to eat dinner a few times....in 21 days. She is truly an exemplary example of what it means to actually be a parent.

So in honor of Lindsey (or win-zee as I often call her), I wanted to share with you...Profound Things My Sister Says:
  • Me saying, "I don't like getting bad news." 
    • Lindsey: It's going to be a long road from here...very long. And there are going to be lots of days that we don't get the best news. Some days we will get better news. But we just have to keep our head up and keep faith. He's going to do great. 
  • Randomly one day
    • You know, I always understood the sacrifice Jesus made for me. But it wasn't until I had my own son that I realized the great sacrifice God made by giving us His son. It's incredible and makes me love Him more than ever.
  • After the prognosis that Killian will most likely be mentally and/or physically handicapped (which we don't believe)...
    • Lindsey:  They kept looking at me like I was going to say, "Oh ok. Didn't realize it was going to be tough. Go ahead and pull the plug." But that's my son. I will love him no matter what.
  • Again talking about Killian's long road ahead...
    • Killian could have easily been born without CDH and also could have still been born mentally handicapped. What would I have done then? Thrown him away? I'm not that selfish.
  • Sunday 1/22 after getting some good reports
    • Lindsey:  Thank God Killian had a great night! ...They thought he wouldn't be alive right now, they must not know the power of my Jesus! So proud of my little boy!
  • When others try to bring her down 
    • Lindsey: I really don't have any energy right now for anything or anyone that isn't the little boy in this room.

  • A post on her Facebook page
    • Lindsey:  All of you that have asked if there is anything you can do to help us, this is how you can help. Take a few minutes and sign this petition. 

  • Just generally rocking her big girl pants :)
    • Lindsey:  How do you know if you have made the right decision? It's when you picked the harder choice and your heart is at peace. 

Not so profound thing my sister said (but it made me giggle):
    • Doctor (name withheld) smells like farts

After getting her epidural :)

Love love love you little one! So proud of you. Keep your eye on the prize...bringing Killian home!
Big Sister, Layna

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.

Any donation you're able to make will help this sweet baby boy - from getting his family to & from the hospital to helping with Killian's care. From all of us who love Killian and his family, thank you!

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. Your sister sounds an awful lot like all CDH moms. They are an extremely special breed. We have one of those breeds in our family also, my oldest daughter. Liam received his angel's wings at 33 days old from CDH.

    May God guide the doctors & nurses with steady, swift hands & provide wisdom to do so.


    Maria, Nonna to Angel Cherub Liam "The Lion" Anthony Hunt and Liam's Big Brother, Landon

  2. She is truly amazing and handling it all so well. I have to say that I would not be handling it that well. Thankfully we have an Almighty Lord who is there to take our burdens to and leave them with him. Love you all SO much! So proud of you Linds!

  3. i'm sure this is a really hard fight, but praise God for his blessings and strength you've all had through it! I know it's got to be scary (i had a little one in the NICU for 2 months, w/o any complications other than prematurity) but hang in there. Even if God decides to take him, you've still had precious time to spend with Killian. Praying ~
    Heather McEntire (jenn's sis-in-law)