Wednesday, May 23, 2012

Killian Goes Outside For the First Time!!

Holy cow. Just got off the phone with Lindsey and we got some somewhat perplexing news. Mainly because it seems like it came out of nowhere!

I'll cut to the chase, we thought these tests they've been doing on Killian the last few days were to assess whether he would be able to start trying to take a bottle. But today the nurse practitioner told her that it's actually been prep work for the feeding tube, or G-tube...and they are saying surgery may happen as soon as THIS WEEK.

It's not bad news necessarily, it's just unexpected.  Here's what we know:

  • Killian is still acting like he's not feeling well at all- crying, de-satting, throwing fits etc.
  • After the saliva test and milk test they did they've determined that 
    • He's NOT aspirating! YAY!
    • But he does have reflux. Boo. (but not uncommon)
  • So the thought process is that he's not feeling well because of the reflux
  • And before trying to put him on reflux medication, they are thinking the G-tube may help
  • The doctors are just as concerned as we are about Killian going under sedation and going back on the vent for surgery to insert the G-tube, seeing as how it took him four tries to come off and stay off the vent 
  • So the plan is to do an a spinal block, so that he doesn't have to go under anesthesia
  • Another thing...they may have to put in a nissen which as I understand it (which is probably incorrectly! ha ha) is something that he may need to help him not throw up as a result of the reflux
  • They are going to do an echo tomorrow to make sure his pulmonary hypertension is gone
And there you have it folks! Aunt Layna Disclaimer: This is ALL still up in the air. Lindsey is going to talk to the doctors tomorrow during rounds to get more details and we'll keep you all posted for sure. Please pray and send positive thoughts that the doctors make the best and right decisions for Killian's care.

It's so nuts that we're to this point! For the last two months it's felt like we were slowly ticking our way to the top of a roller coaster peak. We just may be at the top with it all downhill from here???

So I don't want all of this news in anyway to overshadow what happened yesterday!!

During one of the darkest days, when we were sure that we were losing Killian early in his fragile little life, our family was sitting in the quiet room (crying I’m sure) when we saw a little baby being pulled down the hallway in a wagon. Grandma Val said heavy heartedly, “I want to pull Killian in a wagon.”

Man, I’m tearing up just thinking about it!  I know I sound like a broken record when I talk about how far we’ve come, but BOY AM I GRATEFUL for what happened yesterday!!!

Killian not only got to ride in a wagon for the first time. He got to go outside! Fresh air. Sun. Wind. So many things we take for granted every day. So many things we never in a million years during those dark days believed he’d ever get to experience.  

And here he is….oxygen tank, medicine tree and all. My heart feels like it could just burst!

Lindsey said that he was just in a state of awe the whole time… like he couldn't take it all in. 

People ask me all of the time if developmentally Killian is okay. To be honest, we still don’t know. But what I can say is that for being nearly 5 months old, he’s been in a very depressed environment every day- same room, same walls, same crib. By now, healthy babies been exposed to so much more than our sweet boy.

So we can only hope and pray that this logic rings true: the more stimulation he gets without being overwhelmed, the more alert and developed he’ll become. Blessings. Blessings. Blessings!

Me and my mommy. Look how far we've come! 
Me and Nurse Kendra. She's been with me since the beginning!
Another big part of Killian's day was his milk test. They basically filled his belly full of milk, then they strapped him up like a burrito so he couldn't wiggle around. He had to lay on his back for 14 minutes and then his stomach for 14 minutes. He did great! He digested it all with no aspiration!

Well, it's definitely been an excited last few days! We really appreciate all of your encouraging words, prayers and positive thoughts.

If you're the praying kind, please send some out tonight for the Malkey family, whose little girl is in the hospital with Killian. She's only 4 or 5 days old, on ECMO and hasn't had her repair surgery yet. The doctors told her family today that she has a blood infection and it's not looking good. PLEASE pray that she proves them all wrong...just like Killian has!

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.


  1. Wow, your mention of Killian going outside was enough to make me cry remembering our first day outside with Samuel. Walking out those doors into the sun, fresh air on his face for the first time... Yes, what we take for granted.

    Killian really has come so incredibly far. Thank you, Layna, for continuing to share his story.

    Mama to Samuel, lcdh, Feb1/11

  2. Thank you Corinne for sharing Samuel's story too!! xoxox