Wednesday, March 7, 2012

A Crib at Home, Waiting

Glory be to God that we haven't had a lot to report on lately! It's been a quiet last few days for Mr. Killian and after last week, we're thankful for that! Here's the latest:

  • Tonight they began weaning his morphine again. Remember last week and the week before he went through terrible, awful withdrawal systems. He went from .23 to .17 tonight.
  • To take the edge off and because it's easier to control, they have started him on methadone. Unfortunately, it's just another drug he'll eventually have to be weaned off of. 
  • He's satting in the high 90's and is currently at 40% oxygen on the vent!
  • His infection is gone! (again...feels like every other week poor guy has to go back on antibiotics)
  • He misses his Aunt Layna like crazy. Won't stop talking about me. :)
  • He's back on a good pooping schedule
  • And he's tolerating his feeds well still
So people, I probably don't have to keep reminding you that the stupid evil elephant still in our room in this beast we call Pulmonary Hypertension

I cannot stress how imperative it is that we see improvement in Killian's PH. A could share a lot of scary articles about PH in newborns or tell you the things certain doctors have told us, but in short as I mentioned before a lot of babies born with congenital diaphragmatic hernia ultimately lose their lives because of it. 

But we believe and know through faith that Killian is destined to be the exception and not the rule!! 

Prayer warriors and positive thought givers here's your assignment for the next couple of days:
  • The docs will be doing another ECHO of his heart on Friday.
  • PLEASE focus on the PH going away!!! Getting better! Something! Especially not getting worse like it did the last go around.
  • That as they try to wean his morphine again that there would be no sickness, no tremors, no fits or silent cries. It's heartbreaking to watch and puts his little body through havoc that we don't want.
  • Continue to lift up the doctors and nurses, that they would be led to make the right decisions for Killian's health. 
  • I personally ask that you keep Lindsey (Killian's mama/my sweet baby sister) in your prayers and thoughts. Her strength and perseverance are nothing short of miraculous, but even the strong get weary from time to time. She continues to lean into the Lord and prays incessantly, as do we all. Her only focus is that sweet baby. 
About a week and half ago when he was doing so well (even off the vent), for the first time we began talking about his homecoming. We'd been so focused on keeping him with us, that talking about it, like REALLY talking about it, wasn't even on our radar. That same day our family was out at dinner when we saw a little boy throwing a fit in the restaurant. 

"That will never Killian," Lindsey said giggling. "Wait til he's in a highchair sitting next to us, with food all over his face," Grandma Val said. We even took bets on how long before he was home (I said beginning of April). 

And even though that feels farther away than it did nearly two weeks ago, we still have hope! We know, we just know that he's going to make it and we'll get those moments. He's come too far. He's 65 days old today. He has a room with a crib decorated with zoo animals, filled with clothes, diapers, toys and everything else a newborn could ever want waiting for his arrival. 

So please keep praying and believing it with us!!! 

Killian and Mommy! 

Hugs and lots of love from Florida,

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.


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. The methadone was a Godsend for Samuel. He could *not* get off the other meds until the methadone plan came on board. So there is great news afoot here and I will hold a PH-free Killian in my prayers.

  2. I cannot say this enough: Praying, praying, praying & sending always sending positive thoughts & vibes for this Little Warrior Man.

    "Heavenly Father, Please release the demon PH, take away blood clots and provide comfort for the med weaning. Please provide Killian's precious, courageous Momma with peace & solace, showering her with your grace & mercy. I pray in Jesus' name ~ Amen!

    God Bless You All

    Nonna to Angel CHERUB Liam ("The Lion") Anthony Hunt