Saturday, May 12, 2012

Report from Nashville!!

Hello friends!

I'm sooooo sorry that I've not been able to post in nearly two weeks! I haven't had a moment to stop and breathe, let alone write much...until now.

I'm here in the room with Killian. He's sleeping and I can't even describe the joy of it all. He is such a miracle! I don't ever want to take for granted how far he's come. And I certainly don't want to become complacent in praying for the road ahead.

As you can see from the FB picture I posted last night, he's one big boy! He's weighing in at 15 lbs 2 oz! He has a full head of fine strawberry blonde hair, that is normally a complete bed head mess. In fact, I'm convinced that he's got one sweet baby mullet :).

When he's happy, he moves his arms and legs so much it's like he's crawling out of his own skin. If you blink you'll miss it, but he smiles from time to time- mostly at the sight of his mama.  And those eyes! My goodness! They are like big, deep icy blue saucers that can't stop taking it all in. I LOVE HIM SO MUCH!!!

Killian has had a rough last few days, but all in all he's still a complete rock star!!
  • He is still on his low flow nasal cannula.
  • He doing well with the new feeding schedule, which is feed for two hours and then one hour off.
  • We continue to be encouraged by his desire to suck on a pacifier or put things in his mouth- hoping that when the day comes to try a bottle, maybe just maybe he'll take to it and won't have to get a feeding tube surgically put in.
  • His feeding tube is still NG instead of NJ- meaning that he's getting feeds directly into his stomach opposed to the top of his intestines.
  • They've been weaning his methadone, ativan and another med every day (one medicine a day) and he's slowly but surely getting there.
  • Occupational and Speech Therapy work with him some on the weekdays and we're over joyed by the small strides he's making.
We do need some prayers though for his withdrawals. For the last couple of days he's been throwing some massive fits, getting sick and de-satting. It's better than when he was withdrawing from morphine, but still really tough to watch. Also, please continue to pray for his mental/physical development, his lungs and his heart. 

Ok, I'm gonna get back to enjoying my day with him! Most posts and pictures to come!!! 

xoxox Aunt Layna

P.S. Like his fan page to get the daily updates:
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.

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