Tuesday, September 10, 2013

What's It Like Living With CDH?

What's it like living with CDH? I wish I could ask Killian. But the fact of the matter is, at 20+ months old he can't tell me. He can't tell us what it's like to be connected to a tube so he can breathe because his tiny little lungs never got the chance to fully develop in the safe haven of his mama's womb. He can't tell us what it's like to get most of his nutrition from his "Mickey button" feeding tube in his stomach. He can't even say "mama" yet.
Praises to our Lord Jesus for what he can tell us which is that he is a HAPPY HAPPY boy who loves to laugh at Yo Gabba Gabba, he loves his family (and shows us with the sweetest open mouth kisses!) and through baby sign language can tell us when he wants "more", when he's "all done", when it's "my turn", and more!!! This beautiful ray of sunshine is the same boy who doctors gave a 5% chance of survival and assured us, even if he did make it, he'd be a vegetable. Man we serve an Awesome God!
I just spent the last two days in Nashville watching him crawl, pull himself up, and begin to get into normal toddler antics! His face lights up when you sing (and act out like a fool) "head shoulders knees and toes" and he is the sweetest, most cuddly little munchkin when he first wakes up in the morning. I'm blown away and so incredibly proud of not only him but Lindsey, too. She's so patient with him, always trying to work with him using techniques they learn in one of his many therapies.

******There really is never a dull moment living with CDH. He's had a couple of trips to the ER since our last post. And in the coming weeks Killian has to go in for yet another surgery to have his tonsils and adenoids removed in the hopes that it will help his sleep apnea and reduce his risk of getting pneumonia. Prayers are very much welcomed for that. We know our sweet boy will be in a lot of pain.********

So what's it like living with CDH? It's definitely no walk in the park- still some medicines, fear of reherniation, for Killian chronic pneumonia and all kinds of other not so fun things. Even family road trips are an event as we have to arrange pick up of oxygen tanks along the way. Gives a whole new meaning to "are we there yet?"! But it's also a daily reminder of God's love and an invaluable sense of taking nothing for granted. Like these special moments from my weekend...


After a long afternoon of shopping, tired boy fell asleep.Aunt Layna was trying to hold his head up :)

This was really my first time out in public with him for an extended period of time. He did so good!! He doesn't get fussy or anything!

Love this pic! Lindsey was cleaning his breathing tube so got this shot of his handsome face. BTW, he crawls to the door, pulls himself up and looks out the window all the time!

Little ham bone and me at Church! He loves to sing praises to the Lord!

Family Selfie!

Isn't he handsome!

LOVE LOVE LOVE this picture!! 

We are so blessed! 

I saw on the news recently that a family at a restaurant had a special needs child who was having a fit so the family packed up and ordered their meal to go. When they went to pay the waitress told them someone had taken care of the bill and gave them a note that read: God gives special children to special people. Ain't that the truth!
So if you are reading this from a hospital room right now, emptied out, petrified and numb because this thing called CDH has your little one in its grip, just know there is a community of CDH families praying for you, lifting your hands up when you can't and that through Christ there is hope! Hang on with all that is within you. You can survive this.
And if you are one of our CDH family members who has recently lost a cherub, there is absolutely nothing we can even mutter to console you. Please know that you are loved!
We love each and everyone of you. So thankful that you've joined this journey with us.
Lots of love! Xoxox Aunt Layna

11 comments:

  1. Aunt Layna....
    "He is a HAPPY, HAPPY boy who loves to laugh at Yo Gabba Gabba, he loves his family (and shows us with the sweetest open mouth kisses!) and through baby sign language can tell us when he wants "more", when he's "all done", when it's "my turn", and more!!!". I just spent the last two days in Nashville watching him crawl, pull himself up, and begin to get into normal toddler antics! Thanks be to God!! ;-D
    In the coming weeks Killian has to go in for yet another surgery to have his tonsils and adenoids removed in the hopes that it will help his sleep apnea and reduce his risk of getting pneumonia. Prayers are very much welcomed for that. We know our sweet boy will be in a lot of pain.". I am praying!! Do, please keep us posted on this surgery!! ;)
    --Raelyn

    ReplyDelete
  2. Thanks for the updates :) He's adorable as always. Good luck to Killian with his upcoming surgeries!

    ReplyDelete
  3. "PRAISE REPORT: Killian is out of surgery and already off the vent! He did great!! Doc said he had medium to large tonsils and extra large adenoids, so it should really help his breathing!!". I read this on Killian's Facebook page, but cannot comment. So!! Thanks be to God!! ;)
    --Raelyn

    ReplyDelete
  4. Me again. I am glad that Killian is home, safe and sound!! Thanks be to God!!
    --Raelyn

    ReplyDelete
  5. It has been one month since you last posted on this Blog!! I am missing Killian, my Kindred Spirit CDH Buddy!! On his Facebook page, it was expressed that he said "Ma ma"!! What a wonderful milestone!! ;)
    --Raelyn

    ReplyDelete
  6. I read this on Facebook.
    "The most important was the ECHO and Pulmonary appointments. They finally gave Killian the Okay to start weaning down off of oxygen. Killian is on .5 liter of oxygen continuous now!! And we are currently doing "Room Air Trials" Where we get to take his oxygen cannula off three times a day for thirty minutes as long as he keeps his sats above 95!!! If he tolerates that we will move up to three one hour trials a day, then go back to see the doctors and talk about only needing oxygen at night!!". Thanks be to God!! ;-D
    "Then today at Physical Therapy, Killian hadn't had a nap and was tired and fussy and crying but was still being such a good job working with his physical therapists! She had him stand unassisted for 55 seconds!! And then instructed Killian to come to me and he took TWO UNASSISTED STEPS towards me!! KILLIAN TOOK HIS FIRST STEPS!!! I'm sooooo proud of my growing boy!!!!". Thanks be to God!! ;-D

    ReplyDelete
  7. Happy Halloween!! ;-O
    --Raelyn

    ReplyDelete
  8. It has been over two months since you last posted on this Blog!! I am missing Killian, my Kindred Spirit CDH Buddy!! How is he doing? Are you guys ready for Thanksgiving? ;)
    --Raelyn

    ReplyDelete
  9. I saw this on Facebook. "Killian's first big road trip tomorrow!! Say some prayers that we get him to Kansas safely (and soundly!).". I am sending prayers your way!! Keep us posted!! ;)
    --Raelyn

    ReplyDelete
  10. "We made it!!! And Killian was such a good boy, the entire time!!". Thanks be to God!! ;-D
    --Raelyn

    ReplyDelete
  11. Killian and family....
    Happy Thanksgiving, Friends!! ;)
    --Raelyn

    ReplyDelete