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

ONE YEAR LATER!!

A year ago today...
Killian came home from the hospital!!
He met his doggy cubby for the first time
He rode in a car for the first time
Experienced what it was like to really be outside
He slept in his own crib
He met his incredible nurses LeeAnn and Caroline
After spending 7 months in the NICU and never getting to be in the comfort of our own home, He got to come home with his Mommy and family!

So, what has happened since then?
Killian has had a few surgeries but they were back in October.
We have been to the ER at the least 8 times.
Been admitted at least 5 times
He has gone from being on more than 9 medications multiple times a day at discharge- to now, he is on only THREE medications!!!
he has gone down on oxygen requirements a little bit, he is at 1.5 liters now.
He has had multiple studies done like a sleep study (yet to get results), a heart cath, a broncoscopy, hearing and speech evaluations.
He goes to feeding therapy and physical therapy and hopefully soon speech therapy
Has got the "okay" from multiple doctors to not come back for a year unless we experience any problems including Neurology, Cardiology, Hematology, and Ophthalmologists.
HE CRAWLS!! and cruises along things he can hold on to.
Killian babbles and says a few words like Na-Na and Ya-Ya sometimes we get a Ma-Ma or Da-Da.

This is HUGE because at one point doctors told us that he may never come home and if he did that he would have severe neurological issues, for the neurologists to give us the year okay is AMAZING!
We are hoping the sleep study results will come back and say that we can continue to wean his oxygen now.
Killian has started eating by mouth,and what seems like to us A WHOLE LOT!! About 3 tablespoons around 3 times a day which means maybe the feeding tube can be gone soon.

Killian loves music, loves watching bubble guppies, yo gabba gabba, and mickey mouse clubhouse! He loves to swim in his little pool we got him. He experienced fireworks this Independence Day and likes them! He has gone to church with his family multiple times and LOVES clapping with the music! He has heard a live Irish band at an Irish restaurant and loved clapping with them too! He does a little bit of baby sign language. He may not speak much but he comprehends almost everything we say to him, he is SO smart!!

here are lots of pictures and some videoes

Some fun at Physical Therapy after Killian figured out how to crawl!

First time outside!

First walk!

First time at church (music was loud and startling)

 

Plenty of doctors visits

First official hair cut :)

Laughin and playin with Momma (sorry if you cant hear the sound)

One of my first times pulling up to something

Helping spread CDH awareness

Meeting other babies (this is mommy's best friends little girl)

Slept in many different awkward ways

Playing music

Sitting with Pap-Paw or "ya-ya" and my first cousin Myles!!

Church on Easter with Paw-paw and Ker-Bear

Spreading some more CDH awareness with my 'Team Killian' shirt.

Vanderbilt Children's Hospital's mascot Champ! (it was a long day of appointments he was tired) 

Chillin' outside in my walker

Just being cute!

"#1 MVP"

Shaving Cream at Physical Therapy

 

And these next photos are from a local photographer that held a contest in January for 2013 New Years Baby and all of his fans on Facebook helped him win. :)

Melanie did such a FANTASTIC job!! Thankyou SO much!!

 

 

 

I want to apologize from the bottom of my heart that we have not been able to do an update since January. Layna has an amazing job an has been working hard lately and doesn't exactly have a whole lot of free time on her hands. And I (momma Lindsey) have been working, taking care of Killian's appointments and have just recently started college to pursue some kind of medical career!
also I apologize that this post isn't as great as Layna's posts always were, and I'm being rushed because I have a class in an hour and trying to spend some time with my sweet boy on this amazing day! We are so grateful for all the prayers and thoughts and donations in the past and those that continue, I promise to start posting more often.

God has blessed us abundantly, every Sunday I just bawl my eyes out of gratitude of the healing power God has given to my little boy, and continues to!
I have left a lot of information out so if you have any questions please please feel free to comment!!

xoxox Momma Lindsey and family.

Happy First Birthday Killian Kayne!! Party Pics!

Can you believe it!! We're here! One whole glorious, miraculous, blessing filled year old!  We serve one awesome God! 

And not only is Killian alive, he is well! When the doctors told us he had a 5% chance of survival, they made sure we knew that even on the slight chance he did pull through, he'd most certainly be extremely handicapped at best. 

Well Glory to God, he is no vegetable! He is a capable little boy who did all of the following while I was in Nashville this weekend:

• Sat up for a bit on his own
• Laughed out loud! (a lot)
• Played peek a boo with his blanket
• Passed objects between his hands and explored textures
• Babbled and cooed when he got excited
• Cuddled like it was his job!
• And much more!!

This won't be a super long blog post because I want to get to the good stuff...pictures from his party! But I do want to take a quick moment to reflect on how far we've come. I skimmed all of the previous blog posts and realized that nearly every single one of our prayers were answered. God listens! He loves us and He loves you!

In my devotional today the perfect scripture came up. It applies to Killian, praise the Lord, but it also applies to you! Whatever the new year may bring for you, just remember...

Jeremiah 29:11 

11 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

And now for the party pics!! We decided long ago that Killian's first birthday party would be superhero themed because, well, he's obviously a superhero with mad superhero skills! 

We had lots of friends and family travel very far to celebrate with us. 

There were lots of fun snacks!

And even more candy!

Fun candy bars!

AWESOME cookies our friend Rebecca in Wichita made and sent overnight for the party! 

Grandma Val made cupcakes with HOMEMADE icing! 

Aunt Layna was pretty stoked about "Sucker City"

Yes!!! 

Super Killian (cape and all!) with Super Momma Lindsey

My Grandma Val worked so hard on my party! And she takes such good care of me and my mommy! She's the best!

Grandpa Barry always makes me smile!

There's Crazy Aunt Layna! 

PawPaw Garry, Me and Kerr-Bear. We're all superheros!

Cuddle time with paw paw Garry.

It's Head Nurse Erin! She's still really involved in my life and photo credits for these awesome pics go to her!

So much attention! I don't know what to do with myself

Before the cake, mama told everyone my stats: 224 days in the hospital, 17 surgeries, 3 trips to the ER, 1447 fans on Facebook, 98,000 views to a blog about me!

Then it was cake time!

I did some good damage!

Love my mommy!

I got some sweet presents too! Lots of toys and clothes and diapers!

Silly Aunt Layna! 

All tuckered out from partying too hard.

I'll post more pictures from the weekend later, but wanted to share these with you on this wonderful day. I know we say it a lot but we can't thank you all enough for the love, cards, emails, calls, flowers, toys, cash, food, PRAYERS, POSITIVE THOUGHTS and so much more that you all have given us over the past year.

We are so blessed to know you and to have our sweet Killian with us today. Please say a special prayer today for those sweet cherubs we lost this year and who are currently fighting for their little precious lives. 

We love you all!

xoxoxo Aunt Layna

p.s. Like Killian's fan page for more frequent updates :) https://www.facebook.com/pages/CDH-Cherub-Killian/301945533181876?ref=hl