Sunday, October 14, 2012

Head to Toes

Hi guys! I don't want to start every blog post with apologies, but I truly am sorry it's taken so long to get an update out there for you. I kinda want to give Lindsey and Killian their privacy now that they are home (3 whole months now!!), but I also think we have a responsibility to inform the world about congenital diaphragmatic hernia and its lasting effects on our children's lives.

The most important news is that on Thursday, October 18th, Killian will be re-intubated. And so we come to you like so many times before asking for some prayers... but don't worry! There are just some procedures the doctors want to do on him that require him to go under. They include:
  • An MRI- this is huge! They will be looking into Killian's neurological development. Please pray with us that the report comes back hopeful!!!
  • A Broncosocopy- this is a scope to check his airways from the inside for the first time. We want them to be really open and clear!
  • A heart cath- this is to check out the pressures in his heart and blood flow. It's also a look more into his pulmonary hypertension (which is still virtually non existant Praise the Lord!) and the stress it may have had on his heart.
Please join us in praising God for the miraculous healing we KNOW he has done and for the positive reports we will get soon after the procedures. Also, we are praying and giving God thanks that Killian is going to come off that ventilator with no problems!! Thank you Lord for your word...

3 John 2"Beloved, I wish above all things that thou mayest prosper and be in health, even as thy soul prospereth."

Since it's been some time since my last post I was trying to think of the best way to update you on what's been going on. So I decided, we'll go head to toes on Mr. Killian :).

1. Well, he is still the cutest little marshmallow on the earth! He's got the bluest eyes that are always filled with such curiosity. And that hair! Man he's got a lot of it!
Look at my pretty blue eyes!
2. From a brain development standpoint, we still don't know how much (if any) of his delays are permanent or simply him just playing catch up. But I can tell you this, he has a light in there. And a sweet personality. And likes (The Lion King) and dislikes. And no matter what, he is the BIGGEST blessing to us and so many others.
Me and Aunt Layna watching the Lion King. I REALLY like Hakuna Matata!
3. Teeth!! He's teething right now and like any healthy baby, not the happiest camper about it, but dang it! Each of those little tiny chicklets coming in his mouth just seem like tiny miracles. At one point we didn't think he'd live and now he has teeth! Aggggg!!! :) 
Give me a steak that I can chew on with these teeth!
4. He's babbling, blowing raspberries and little by little taking more tastes and swallows. He's been to two speech therapy appointments and we feel confident that he'll continue to make progress.

Heart, Lungs and Stomach
1. We'll find out more on Thursday, but so far since coming home, except for the one little hiccup, he's been breathing well still with the assistance of oxygen.
2. His heart from what we can tell is still beating strong! Again, we'll know more on Thursday about that so stay tuned!
3. He still has his feeding tube and he might for quite some time. But for the time being, he does well with his except for constantly playing with it and pulling at it! He even pulled it out once and scared the crap out his Grandma Val and nurse! 
I'm very flexible and like to do "baby yoga" all the time. And I practice my motor skills by trying to remove my feeding tube when no one's looking! 
Hands, Legs and Strength
1. We see improvements everyday in his fine motor skills. He reaches for things and if he drops them, he'll pick them up. Also, when I was in Nashville a few weeks ago, he had a toy that only made a particular sound when he hit it a certain way. Once he figured out how to keep that sound coming, you couldn't stop him from hitting it in that spot! 
2. If you stand Killian up and hold onto him, you can feel him trying to put more and more pressure on his legs. Soon he'll be doing baby lunges! 
Look at me standing up!
3. For so long, we didn't want to push him too hard for fear that he would get upset and collapse a lung. Well no more of that! Lindsey has resolved: if he's awake, he's out of his crib either sitting in his chair working on his abdominal muscles, laying on his belly to try and hold his head up or some other form of physical therapy.

There is not a day that goes by that we don't give God all the praise and glory for saving our little guy. This road is tough and I know I find myself some days getting blue about the fact that he's not crawling, that he's not as alert as other babies his age and trivial things like that, but I only stay there for seconds when I think about how far we've come...and especially when I think about all of the friends we've made along the way who's babies have gone on to heaven because of CDH.

I can play patty cake, but here I just felt like being cute :)

Let us know what questions you might have about living with and caring for a baby with CDH. We want to help!!! And we truly believe that God is working through Killian to make a difference is some people's lives. We're honored to shed light on this terrible condition.

And now I leave you with some serious cuteness!!! Love you guys!

Monkey Pumpkin!

My first time to church. I really liked the music!

Enjoying the autumn breeze..oh yeah, am I'm just chillin in this pumpkin!

Ok, maybe this has gone a little far. :)
xoxox and lots of love!
Aunt Layna

p.s. We'll keep you updated about his procedure on Thursday on his Facebook Page here: 


  1. what an absolute miracle it's so awesome to watch him grow and learn and develop morne and more I will be praying for all the procedures for great answers! still reminds me so much of my zach at that age CDH can be a real monster and it's a lifelong challenge that we will always have to deal with the side effects of the consequences, but these little guys are such miracles and such troopers just 1 look in their eyes and we know we can continue fighting on! God bless

  2. Thanks for your encouraging and kind words Dotty!! Much love!

  3. So glad to see an update on sweet Killian. Sorry to hear that he has to be reintubated for these procedures. I hated seeing Samuel reintubated, even when I knew it was necessary and temporary. I will watch for news and pray that you get hopeful and useful information on how to help Killian develop. I know it is hard to see them not meeting milestones, worrying about what that means and what the future might hold. And then they flash you that smile and there is God right there in those eyes...

    I think of you all often and send special CDH-mama-strength to Lindsey.
    Love to you.