Tuesday, February 28, 2012

Super Grandma Valarie!

We have definitely be riding the CDH roller coaster the last 48 hours. As you know if you read the blog, Killian Kayne had an incredible weekend. He got his first bath. He seemed really alert. And he was coming down on a lot of his medications. So of course we were excited Sunday morning to learn that he had pulled his own breathing tube out, almost as if to say, "I'm ready to get outta here!"

While extubated on Sunday afternoon, Grandma Val, Lindsey and I watched his heart rate climb to 208 (was in the 140's and 150's) as we nervously paced the room hoping and praying that it would come down on it's own. And it did for a little while, but no one knew why it had shot up in the first place.

He's been struggling since then. His oxygen and CO2 numbers have been really good, even without the breathing tube, but he's seemed really uncomfortable. And then last night here's what happend:
  • His heart rate got all the way up to 228 and stayed there for about three hours.
  • Around 3 or 4 a.m. this morning they intubated him again.
  • After they did that and did an x-ray they noticed there was air outside of the lungs.
  • They put in a chest tube (he had one before but it's been removed for awhile) to relieve the pressure.
  • Now his heart rate is where it needs to be and his back down to the lower vent settings.
  • They've upped his morphine and versed (anti anxiety) to make him more comfortable. 
  • They had stopped his feeds before all of this because he was getting really sick (probably due to withdrawals). So right now he's back to the TPN.
And so it goes we're told, we take a few steps forward and some back. When the doctors did rounds earlier they told Lindsey that the air in his chest was most likely from the high amount of vapotherm he was receiving through the nose cannula, which was probably the correct amount he needed to survive off the vent. Bummer.

So little man, as much as he would like to argue otherwise, needs more time to get stronger. And so we wait on Killian and we wait on the Lord.

Wait for the Lord; Be strong, and let your heart take courage; Yes, wait for the Lord. 
Psa. 27:14

Please pray with us and for us to have strength, peace and understanding. And in true Lambert/Welch/Dugan style, we maintain our smiles through the tears because we know that Killian is going to make it through this, just as he has everything else! 

And I have no doubt that one of the main reasons he's going to make it is because he has the love of a Super Grandma! 

Valarie (Lindsey's mom, my former step-mom -confusing I know, but just go with it) is one incredible mom and grandma! This woman is a rock. She rarely breaks, and when she does it's quietly and only for a nanosecond, because she knows she has to be strong for her baby girl. Through Lindsey's entire pregnancy while Lindsey was protecting Killian, she was protecting Lindsey. 

Since day one in the hospital, Valarie has been there. Everyday after work for hours on end, she is there. When Lindsey needs a break to do the things like laundry, sleep and eat, Valarie is there. Weekends, there. When Killian is doing great, she's there. When he's not...well you get the point. 

So here's to a SUPER GRANDMA who through her love and devotion to her daughter is daily showing Lindsey what it means to be truly be an incredible mother. Knowing all of this, it makes it even sweeter that Val got to hold baby K for the first time yesterday!! 
In Grandma's loving arms!
In the dark times...
In the bright times..
And all the other times in between.
 And to me, this is what Valarie represents in Killian and Lindsey's lives...

Love is patient; love is kind. Love is not jealous; is not proud; is not conceited; does not act foolishly; is not selfish; is not easily provoked to anger; keeps no record of wrongs; takes no pleasure in unrighteousness, but rejoices in the truth; love bears all things, believes all things, hopes all things, and endures all things. ~I Corinthians 13:4-7

Constantly in prayer for Killian and for those who love him, including all of you!
xoxo
Aunt Layna
Killian's Social Media Coordinator 

p.s. Grandpa Barry, Val's husband, is another hero in this story! I'll write more about him later. He deserves his own post :) 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.



Monday, February 27, 2012

Killian Cries (Aloud) For The First Time!!

Oh wow. I have so much to write about this past weekend in Nashville, all of which is touching, marvelous and fuel for many future blog posts. Killian DEFINITELY showed off for his aunt Layna this weekend :). But I want to get to the really really good stuff first.

After eight long weeks, 56 days in the hospital, we got to hear the faintest, sweetest sounds of life. We heard Killian cry! See the doctors at Vanderbilt are so incredible, they intubated Killian before he ever took his first breath, so we've never heard his voice. We've only seen silent cries . I'll never forget the night he was born, after they rushed him to the NICU, exhausted and emotional, my dad (who was in the delivery room) broke down and said, "I just wanted to hear him cry. That's how it's supposed to be."

Well guess what pops...another prayer answered! Lindsey and I went to church together Sunday. After an incredible sermon and an awesome night with Killian Saturday (post later about that- first bath, her holding him for the third time, etc.) we were on cloud nine.

As we drove to the hospital she whipped out her cell phone. "Three missed calls. One from the hospital." Slight panic set in.

"Hi Lindsey it's Dr. Harrelson," we were surprised. She was giggling. "Killian's fine, but um...well...he extubated himself this morning. He's actually doing really well. Call me back."

That little stinker had pulled out his own breathing tube!


And here's what we got to hear....


video


Since then Killian has been doing great, all things considered! His oxygen levels (which would be a major concern) have been amazing! He's having some digestion issues. Please pray/send good vibes about that. ! 

Next up for the superstar will be coming down on his nitric and pain meds! 

Will write more when I can! Hugs to you all!

xoxox Aunt Layna

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.






Saturday, February 25, 2012

Silent Cries and Big Surprises

Man I can't wait to hear this kid's voice!! Yesterday for the first time I got to witness his "fits" and see what Lindsey means when she says he's really agitated. Let me tell you, it's not easy to watch. His face gets all mushed up as he frowns his mouth like a trout. He balls his fists so tightly he could bust rocks. He turns a perfect plum purple and shakes with all his might. And if he wasn't on mute because of the tubes in his mouth, he'd be wailing like a banshee! I want to hear him cry!  It took all of my strength not to run over, swoop him up and yank those tubes out of his mouth so he could let one loose. But alas, we are just left with silent cries. 

I also had the honor of seeing, hearing and smelling the repercussions the withdrawals are having on his digestive system. Holy crap (no pun intended) was that surprising :). He got sick a few times, from both ends. Lucky for me, I get play the "Aunt card" and stand idly by as Grandma Val and Lindsey changed a couple of those diapers. I'm happy to blog about it though! :)

But this is not a sad post!! He's continues to make incredible progress everyday! See for yourself as he tries to turn his head in this video....


MAJOR (awesome) stuff is happening right now:

  • Grandma Val and I got to the hospital this morning to see that according to the vent, he was breathing 100% of the time on his own!! They've currently got the vent set to only kick in if he needs it. It's been two and half hours and he is doing great!!! 
  • He's down to 5% nitric! From here the doctors will take it down 1% at a time. 
  • They continue to wean his morphine and versed which are both drip medications. We may be able to get him on oral alternatives soon. 
  • All of these things are huge steps because there is no possibility of him going home if he still has a breathing tube (vent), a feeding tube in his mouth, on any drip medications or on nitric oxide. So the farther we get away from these aids, the closer he gets to sleeping in his jungle themed crib next to his mama's bed! 
  • Also, when he finally gets all these tubes out, he can get his first REAL bath! He is a little stinky, but adorable :)
  • When he's awake, he's so alert! He looks for his mama and grandma when he hears their voices.
  • He's up a little bit more on his feedings! 
Funny things about Killian I'm learning:
  • He really likes it when you stroke the top of his peach fuzzy head.
  • When he gets really agitated, gentle taps on his bottom seem to calm him down.
  • He favors sleeping on his right side. 
  • And he really does hate the sound of Aunt Layna's singing! Case in point: Yesterday it was just Lindsey and I here with him. We were reading scripture and I started in with "How Great is Our God". By about the second verse, he started silently crying!!! We both were laughing so hard I thought we were going to have to step out of the NICU! 

Me and Aunt Layna!! 

More pictures and videos soon! But I'm gonna get back to Killian right now :). Love you guys!
Aunt Layna
Killian's Social Media Coordinator
``````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````
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.






Friday, February 24, 2012

A Night With Killian

*Warning: melodramatic musings to start in 3...2...1" 


Yesterday was rough for me. I got a whopping five hours of sleep (combination of excitement and stress), worked a full day and then took a three hour flight from Florida to Tennessee. I was spent. But all of my exhaustion went straight out the window the second the wheels hit Nashville ground.  


Lindsey (who looks amazing btw!!) picked me up from the airport. We giggled and caught up as we drove to the airport, frantically trying to get in before visiting hours were over. Visiting hours? "But don't they know who I am? I'm KILLIAN'S aunt!" :)


As Lindsey and I got off the elevator and onto the NICU floor, it felt like I had never left. Why is it that time stands still when you love a sick baby? And everything was different, but the same. 


I sanitized my hands, walked down the long hallway, signed in/got my badge, turned the corner and there it was...a room with adorable laminated letters cut out and glued to the outside- "K-I-L-L-I-A-N." I swear I felt like I stopped breathing for a second.


I turned the corner and saw THE most precious baby, my sweet little nephew, with his eyes wide open and his chubby  arms flailing, almost as if he was saying, "Hi Aunt Layna! Please don't sing to me like the last time you were here. It hurts my ears!" :)


I CANNOT tell you guys how blown away I was. This is not the same child I left more than four weeks ago!!! Pictures don't do him justice.


For one, he's fat! Just kidding, but he looks healthy. His coloring is so pink and perfect. Of course his mama, a hairstylist by trade, always keeps his signature faux hawk in check. But the the thing I was the most blown away by were his eyes! 


For the first time, I saw him alert, like really alert. As they come down more on his pain medication we get to see glimpses of his sweet personality. Because he's intubated, it's almost like he's learned to communicate with his eyebrows. "What's that noise?" or "Hi there! Happy to see you!" I know the doctors have said they're almost positive he'll have development problems, but they have to be talking about another baby because the one I saw last night knew exactly what was going on! :)


Also, it's nuts how less fragile he seems. Lindsey just moves his legs, touches his hands and strokes his head without even thinking anything of it. When I left the last time, we were all scared to touch him for fear he'd break. Not any more!


Lindsey and I are back at the hospital with him right now and this is what's happening (in real time!):

  • They are currently doing an ECHO to check his heart. Because they've been coming down on his nitric, they want to see if there is any change in the pulmonary hypertension. 
  • Our prayer is that there is IMPROVEMENT in the PH so they can continue to wean the nitric. 
  • He's currently at 10% on the nitric (started at 20) and putting up wonderful numbers, so we're really really hopeful.
  • He's still holding his own off all blood pressure medication!
  • They weaned his versed (anti-anxiety) more today, but are holding on weaning any more morphine for the time being.
  • He continues to tolerate his feedings well and now weights 9lbs 14ozs! 
  • And he is the most darling baby boy I've ever seen! 



He's resting now, but the next time he's up I'll try to catch some video! Hugs to you all! Keep praying! 
Aunt Layna
Killian's Social Media Coordinator 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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. The paypal donation account was set up by a friend, Liz Wolfe, whose name and email appears on the PayPal page. Liz manages all donations with the support and oversight of Killian's aunt, Layna Lambert Dugan.
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.

Monday, February 20, 2012

So Many Things To Be Thankful For!

Tell us what you think about this....(read this with your head cocked to the side like a dog who's heard a high pitched noise, because that is how I'm writing it.)

So today was Killian's heart ultrasound to see how his pulmonary hypertension is doing. Of course we were in constant prayer (with a lot of you) for a change. The results always take forever to get back, but Lindsey called earlier to say that after the ECHO, they reduced his blood pressure medication. I tried not to get my hopes up, but we took that as a good sign...wouldn't you?

Unfortunately, when the doctors came in, they told Lindsey that his PH was still moderate to severe BUT, the doctor seemed perplexed. "I'm not quite sure what is going on, because his heart looks normal (NORMAL!!). Also, a baby's heart wouldn't be able to function on only 40% on the vent and have severe PH?"

The second Lindsey told me this, I felt this, "Because I AM protecting his heart." :)

Scratching their heads in disbelief, they concluded that there has to be a disconnect between what the ECHO is saying and what is actually happening. We're believing in the reality and the facts which are, that Killian has successfully handled being brought down on the vent, that he survived three hours last week off the vent and that this little baby is not giving up!

So here's what's next for Killian Kayne:

  • Over the next two days, they are going to wean him off what little bit of blood pressure medication he is still on.
  • After that, they are going to try and wean him off the Nitric Oxide (which is used to treat PH) and see how he does. He can't go home on Nitric. Also, they can't do an MRI while on Nitric and they want/need to see what's going on with those blood clots.
  • Once they see how this goes, they'll check his PH again and then potentially try different medication if they see his heart struggling at all.  
We are cautiously optimistic that Killian and the Big Guy Upstairs are yet again making medical miracles happen! 

Other highlights (good news just keeps comin'):
  • They are upping his calorie intake (not the feeds). 
  • A week or two back we mentioned drop foot, and them having to bring in physical therapists...but Killian said, "Nah, I'm cool. Just gimmie a blanket wall to push my feet against and I'll be good." It's no longer a concern of theirs for the moment :).
  • He hasn't had any more seizure/tremor activity since last night, so no EEG today! 
  • They continue to slowly bring down his morphine and his Versed (agitation drug)! 
Dear, dear friends, thank you from the bottom of our hearts for your prayers and positive vibes. Killian is 7 weeks old today! That's 49 days longer than many doctors said he'd be with us, and we KNOW that you've had a hand in that. Many of you believed for a miracle when we no longer could. Here's to thousands and thousands more days with him! 

And now for some eye candy!!! 


1 Thessalonians 5: 18 
In every thing give thanks: for this is the will of God in Christ Jesus concerning you.




Three days until I go to Nashville!!!! Hugs!
Aunt Layna 
Killian's Social Media Coordinator 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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. The paypal donation account was set up by a friend, Liz Wolfe, whose name and email appears on the PayPal page. Liz manages all donations with the support and oversight of Killian's aunt, Layna Lambert Dugan.
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.

Friday, February 17, 2012

The Story of Killian's Kisses at BGT

First things first, Killian Update:
  • Little man had an okay day. He's still really easily agitated.
  • They ticked down his morphine a tiny bit, so that could be causing it.
  • They continue to increase his feeds! Yay!
  • One of his doctors told Lindsey that she'd like to switch up his medication a bit to see if it helps his pulmonary hypertension.
  • In about a week or so, they'll try to take him off the vent again and see how he does! 
  • Please pray/send good thoughts for the following: his infection to go away, that this new medicine combo will take that stupid old pulmonary hypertension away, the blood clots in his brain would dissipate and for strong lungs and a strong heart! 

About three weeks ago two coworkers, Sonja and Anna, pulled me into a room to tell me they wanted to organize a fundraiser to help Killian and Lindsey called "Killian's Kisses". As I cried (again, I'm a crier) they said, "There isn't a whole lot we can do to help Killian get better. But we can do this." They had already cleared it with management and everybody was all in!

None of this was about the money to us (the family) or to any of the awesome people who helped design the logos, write the status updates, take pictures of the event, pass out the Valentine's or any thing else that it took to make this event a success. It was about raising awareness for CDH and giving people who wanted to help an outlet to do so.

Employees could buy "flowergrams" for $2 a piece
The flowers with Valentine's were later distributed to our desks.
They brought in an awesome catered lunch from Sushi Maki!
Everyone had a lot of fun delivery "secret admirer" Valentine's and silly notes to friends.

Never in my wildest dreams would I have imagined that BGT would raise the amount of money that they did. Not $200. Not $500. Not even $1000. Between employee and client contributions on the blog or in person the total was ....$2041!!! Can you believe that!
I sure couldn't! I was in a meeting when they came in to tell me. Look you can see my fillings!

And I'm crying. Big surprise.

Me (Aunt Layna) calling Lindsey 
Telling her the amazing news!!

PLEASE go to the BGT Fan Page and give them a shout out if you feel led! More companies would do well to take a page out of their book!

As always, we will take 10% right off the top to donate to Cherubs, one of our favorite CDH Awareness organizations. Lindsey has also said she'd like to use some of the money to help organize a CDH awareness walk on April 19th in Nashville, while others are marching in Washington D.C. the same day. And don't worry folks, she'll claim this money on her taxes ;)

And now to the really good stuff....videos of the fam!!









To every single person who contributed (or even has so far!) or had a hand in making this event happen, we will forever be in your debt. I only hope that God lays a path for us to one day pay it forward!

Six days until I go to Nashville!!!! Hugs!
Aunt Layna 
Killian's Social Media Coordinator 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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. The paypal donation account was set up by a friend, Liz Wolfe, whose name and email appears on the PayPal page. Liz manages all donations with the support and oversight of Killian's aunt, Layna Lambert Dugan.
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.

Thursday, February 16, 2012

Off the Vent for a Bit!

 What an exciting day! I got a text today around 1 p.m. EST from Lindsey that read:
"Omg omg omg omg! they are going to take Killian off the vent cause the leak has gotten so bad they wonder if he even needs it...an on a nasal cannula for the nitric!! Of course they will reintubate if he needs it."
I immediately stepped outside to call her. The joy in her voice was palpable! I of course proceeded to cry (I'm a crier). "We'll get to see his mouth for the first time," she said. "And I'll get to hear him cry!" (Killian was intubated before he took his first breath) Then I cried some more.


And here he is!
Handsome boy!



Killian rocked himself some "no vent" action for nearly THREE HOURS! Way to go buddy! But then he started to split on his pre and post numbers (what he was taking in wasn't matching what he was putting out). 

They have successfully reintubated him and he is back on the vent now. We definitely knew this might happen and a lot of other CDH parents shared with us their stories of it taking multiple times for their little cherubs to come off the vent. I like what our friend Gene said on Facebook, "First one push up, then two!"

We are just super thankful that he is trying. He is fighting! And we got to see even more of his amazing little face! Take that 5%! Lindsey didn't get to hear him cry, but there is plenty of time for that because this kid isn't going anywhere! 

Here are your prayer/positive thought assignments for the night :):
  • First, stay in a state of thankfulness with us over what happened today!
  • His infection number came back a little higher again today. Don't know what that is all about, but they are keeping him on the antibiotics for now. 
  • Always remember his little heart and pray for that pulmonary hypertension to go away! 
  • Remember to also pray for those blood clots in his brain to disseminate. 
  • Keep Killian's girlfriend Avarey Grace in your prayers. This sweet baby girl who we've fallen in love with had to go on ECMO yesterday. It's a scary thing, but we know she has to get better because she's betrothed to Killian :)
Seven days until I go to Nashville!!!! Hugs!
Aunt Layna 
Killian's Social Media Coordinator 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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. The paypal donation account was set up by a friend, Liz Wolfe, whose name and email appears on the PayPal page. Liz manages all donations with the support and oversight of Killian's aunt, Layna Lambert Dugan.
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.

Tuesday, February 14, 2012

Baby Got Back!

I can't wait to give you guys the full details on the fundraiser that my work, BGT, held today for Killian and CDH awareness called "Killian's Kisses" :). But we're still uploading pictures and counting the donations so stayed tuned there! In the meantime, here's the latest on our little Valentine Killian Kayne Lambert! 


The last couple of days have been rough as Killian has been going through a lot of withdrawal symptoms from the morphine. On top of that we didn't the best results back from his head and heart ultrasound...BUT I say all of this with a smile on my face because we have lots and lots to be thankful for. 


Highlights:
  • Even though the pulmonary hypertension came back "unchanged" they also said it was moderate. We can live with and be thankful for moderate!
  • Poor baby was experiencing a lot of withdrawal symptoms, but luckily this is A) not unexpected and B) "easily" fixed. I say easily because being on morphine is not what is keeping him in the hospital. So contrary to what I posted this morning, they are going to hold off on the methadone and rather just try to ween him off a bit slower. 
  • Once they upped his morphine a bit today, he stopped throwing up and his shakes, sneezes and other symptoms eased up. 
  • He's back up a little on the vent, but still down to 49%! 
  • He's still on the blood thinnners for the clots, antibiotics and one blood pressure medication.
  • HERE'S THE MAJOR NEWS: For every 60 breaths...Killian is taking 32 on his own!!!! I'm on cloud 9 over getting this news today!
  • And lastly, earlier this week, for the very first time Killian got to lay on his tummy for a little while! Isn't it the cutest little back you've ever seen?!

BABY GOT BACK!


The back of his adorable little head! Lindsey said he has a mullet :)

Lastly, Killian sent this Valentine to his CDH girlfriend Avarey Grace. It says, 
"Roses are red, violets are blue, sending my love from this NICU to you! 
Happy Valentine's day Avarey Grace! Be mine?!" 
Please prayer for Avarey and his family too!! She was born last week and is still fighting hard for her place in this world!

Tomorrow they'll be drawing a blood gas and testing for infection. Please continue to pray/send good thoughts for his heart, the blood clots, withdrawals and no infection!!

Happy Valentine's Day Friends!
Aunt Layna 
Killian's Social Media Coordinator 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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. The paypal donation account was set up by a friend, Liz Wolfe, whose name and email appears on the PayPal page. Liz manages all donations with the support and oversight of Killian's aunt, Layna Lambert Dugan.
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.

Sunday, February 12, 2012

Pray for His Heart This Valentine's Day

The doctors pulled Lindsey into the "quiet room" this week. "Why don't you explain to us what you understand about Killian's condition," one of them said to her. My hypothesis is they do this because they can't understand how she remains so calm, and even upbeat about Killian's condition.

"Well," she said, " I understand that he is still a very sick baby. I understand that he is still on a lot of support." She continued to rattle off the cold hard facts. After realizing that she did in fact grasp the severity of his condition, they went on to very gently remind her that since there has been no change in Killian's pulmonary hypertension, that they are still giving him a low chance of survival.

Treading lightly, as if she might break (which I should know better by now- she won't) I asked her what she said? How was she feeling? "I told them I'm not giving up on my son. That I'm a person of faith and I know my God has this under control. I told them that I respected their opinion." Then she giggled, "Annnnnnnd I basically told them to shut up in the nicest way I could." :)

One of our favorite nurses, James, explained to Lindsey that the doctors (brilliant, wonderful men and women who we adore and are so thankful for) tend to see the really big picture. And in the larger scheme of things, they know his heart is under tremendous stress.

But what WE see are the tiny improvements daily and the glimpses of hope- ticks down on his ventilator, decreases in medication, opening of precious eyes that search for mama. Plus, when we thought we were losing him a few weeks ago, Grandpa Garry promised him a jet ski, a four wheeler and just about every other motorized vehicle on the face of the planet to stick around. He pulled through that, so we're thinking Papa G needs to start saving!

So with Valentine's Day upon us, we're asking that you pray and/or send positive thoughts for a STRONG HEART and that tomorrow when they do another echo to scan his heart that the pulmonary hypertension is not only better, but that IT IS GONE! Believe it. Praise God in advance for the miracle that is going to happen tomorrow!!


Psalm 28:7 The LORD is my strength and my shield; my heart trusted in him, and I am helped: therefore my heart greatly rejoices; and with my song will I praise him. (Thanks Tricia for this verse!)


Highlights of the day and prayer/positive vibe requests:
  • Killian is down to 33% on the vent and still satting in the high 90s-100!! 
  • Feedings continue to go well. He's at 33 cc's! 
  • No seizures in the last few days!
  • They are talking about trying to bring down his morphine dosage! While this is great news, what you might not realize is that a lot of CDH babies become physically addicted to the pain medication and will often go through withdrawals. This can be very uncomfortable for them and for those who love them to watch. Please pray that as they start this process that Killian doesn't encounter ANY of these problems. 
  • They are also going down on his versed, a sedative, because he's been less agitated.  
  • Again, tomorrow is the ultrasound of his heart. We need you to pray for and meditate on the improvement of his pulmonary hypertension. It's the next big step toward getting our guy home!!
  • Also as equally important as the heart check, tomorrow they will be doing another head ultrasound, too to check on the blood clots in his brain. We need those to be GONE!!  
Thank you all as always for your encouraging words, for caring, for praying and for reading. 

Much love from Aunt Layna in Florida! 
Killian's Social Media Coordinator 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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. The paypal donation account was set up by a friend, Liz Wolfe, whose name and email appears on the PayPal page. Liz manages all donations with the support and oversight of Killian's aunt, Layna Lambert Dugan.
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.

Friday, February 10, 2012

BGT's Killian's Kisses

 First and foremost here's the latest with Killian
  • His EEG hat is off and there have been no visible seizures (that we know of) in the last day or so.
  • His heart rate is down in the normal range! We're praying that this is a sign that maybe there has been improvement in his pulmonary hypertension. PRAY/SEND POSITIVE THOUGHTS!!
  • He got his hair washed :). We thought it might be turning red. Turns out it was just dirty!
  • He continues to put up solid saturation numbers! 

Now, let me tell you a little story about this amazing company I work for and coworkers I love...

I work at a digital agency (websites, online marketing, social media, etc) called, BGT Partners. We have powerhouse clients and the cream of the crop when it comes to employees (case in point!). It has been voted one of the best places to work in the country more times that I can keep track of. Maybe it's the great pay. The sound strategy. The beer cart that rolls around on Fridays. Or maybe, just maybe it's one of the greatest places to work in the country because of things like this...

BGT has supported me 110% through Killian's journey. Anytime I needed to go to Nashville it wasn't even an issue. My team members covered all work for me without hesitation. They even sent Lindsey a lovely flower bouquet and Killian a BGT blue stuffed animal! I can't get through the day without at least 10 people stopping me to ask me how he's doing, including the CEO, David Clarke, who has told me that he's scared he'd get in trouble by HR if they realized how often he looks at my  Facebook profile for Killian updates :). As if all of that wasn't enough, they decided to take it a step further.

BGT is hosting a Valentines Day lunch in our Miami office called "Killian's Kisses" to raise money for Killian and CDH Awareness! At the lunch, everyone will be able to purchase "BGT flowergrams" for $2 a piece to send to other employees with all money going to Killian's care!  How cute is that! As always, of any money raised for Killian, we'll be giving at least 10% back to support CDH awareness.


And it get's better! They have directed their nearly 12,000 adoring fans on Facebook and Twitter (become one and show them some love...LIKE THEM OR FOLLOW THEM) to donate on Killian's blog or directly to Cherubs-CDH Support. Bonus effect>>>they are raising awareness for CDH!!! 

I want to give a special shout out to Sonja, Anna B. and Eric H. for coming up with this idea, for Leo who designed these incredible logos, for the wonderful PR team for pushing this out to the world and to everyone at BGT for their love and support. You guys have blessed us beyond words! Can't wait for the day that Killian can come to the office and give everyone hugs and Killian kisses :)!


This is what anyone who goes to their Facebook page will see, with a link to this blog!


Now, back to work so I don't get fired :)

xoxoxo Aunt Layna, 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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. The paypal donation account was set up by a friend, Liz Wolfe, whose name and email appears on the PayPal page. Liz manages all donations with the support and oversight of Killian's aunt, Layna Lambert Dugan.
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.






Wednesday, February 8, 2012

In a Valley Today

There are peaks and valleys with CDH babies and the last couple of days have felt a bit like a valley. Don't get me wrong, we are grateful for sooooo many things such as:

  • Killian is being weened down to 50% on the ventilator! 
  • There have been no visible seizures for the last couple of days.
  • We continue to be amazed and blessed by the kindness of our friends, family and complete strangers who have fallen in love with Baby K like us :)
  • He continues to tolerate milk through the feeding tube. 
  • Other babies that we fallen in love with in the hospital with Killian continue to get better! Yay Rylen!!!
The valley part includes the following:
  • Killian continues to have random "fits" that cause his numbers to drop. We don't know what could be causing them. 
  • We're still recouping from the news about there being no change in his pulmonary hypertension. For me personally, that's weighing heavy on my heart. 
  • The doctors have hooked him back up to EEG to monitor his monitor his brain activity/keep an eye out for more seizures.
"You talking to me?"

  • The doctors are concerned that Killian may have "drop foot." Forgive me if I get the details wrong, but the way I understand it, babies are supposed to have the following:
    • Babinski reflex - When the sole of the foot is firmly stroked, the big toe bends back toward the top of the foot and the other toes fan out. This is a normal reflex up to about 2 years of age.
  • Killian isn't doing this the way they'd like, so they've put up a blanked wall at his feet to give him something to push on. Also some physical therapists will be coming in to weigh in on it. I think I've found another CDH baby's story about dealing with this here, but I'm not sure. 
All bundled up with his EEG hat and foot blanket wall.

So prayer warriors and positive thought givers, here's your homework for the night:
  • Strong heart for Killian. We desperately need his pulmonary hypertension to go away.
  • ALL blood clots, especially the ones in his brain, to go away
  • No seizures!!!
  • No more "fits" or irritability.
  • Pray for his neurological well being...restoration for any damaged brain cells. Speak life to all damaged organs. We want Killian to not only have life, but have it abundantly!!!
  • Lindsey has been feeling a little under the weather, so please pray for her. This girl has run herself ragged spending every moment she can with Killian and as much as we tell her to take care of herself, it's all catching up to her (even the pressures of just life in general).
  • For Grandpa Garry and Ker-Bear who are driving from Neodesha, KS back to Nashville tomorrow because two weeks without seeing Killian is two weeks too long!! Safe travels dad!! :) 
  • The doctors and nurses who continue to dance the dance of perfect medication dosages, placement of his body, level on his vent...these men and women have a lot of responsibility and we want to continue to lift them up in prayer! 
We're hoping for a peak tomorrow! I'm loving this scripture today:

Zephaniah 3:17 The LORD your God is in your midst, a mighty one who will save; he will 

rejoice over you with gladness; he will quiet you by his love; he will exult over you with 

loud singing.

Love you all! 

xoxoxo Aunt Layna, 

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