Sunday, January 29, 2012

"So he's going to be okay right?"

A coworker of mine asked me this week how Killian was doing. After I rattled off the latest news of that day (typically includes me telling people what his blood gases are, if he's peed or pooped, etc.) he said, "So, he's going to be okay right?"

I haven't quite figured out how to answer that question without sounding like the ultimate Debbie Downer. As his family and people of faith, we know he's going to be "alright" because no matter what happens we believe God has this on lock down! But the truth is, Killian still has a very very long road to recovery. And while we celebrate EVERY victory, the fact of the matter is Killian is still a very sick baby.

I say all of this with two goals in mind.
  1. So you won't let up praying for him and/or sending positive thoughts his way. We've said it before, but we know beyond a shadow of a doubt, your prayers/positivity make a difference! 
  2. And to bring more awareness to what thousands of other families are going through right now, not only for these precious newborns in their first months of life, but for the rest of their (sometimes short) lives. Many survivors of CDH deal with medical issues ranging from respiratory issues and hearing loss to digestive complications and development problems. 


If you feel led, take two minutes to sign this this petition to increase research of this debilitating condition! And then share it with others! 

Highlights of last couple of days:

  • The infection is gone! Praise the Lord!! They are going to keep him on antibiotics to be safe. 
  • Still no more seizures! 
  • His blood gases have been coming back okay. 
  • He made a poopy!!! Might seem gross to celebrate this, but it means his organs are functioning the way they should. 
  • They are talking about putting him back on the oscillator :(. Since putting him on the regular vent, he's been "leaking" from the tube in his throat and he might not be getting all of the oxygen he could be getting. They don't want to increase the size of the tube as it could do more harm than good. We're trying not to view this as a step back, but rather as it's just giving Killian more time to get stronger so he can get back on the regular vent. 
  • Before moving back to the oscillator, Lindsey will get to hold him again (hopefully today)!! 
  • They are doing an echocardiogram to check the size of his liver and heart. Please pray that they both look healthy and not strained!!
Thank you all so much for reading and caring! 
Love,
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, January 25, 2012

Inspiration Station

First things first...Killian update (just interviewed Lindsey):
  • They took his catheter out today. He has to be more comfortable and this gives Lindsey more practice changing diapers :).
  • He's back up to 92% on the ventilator. They aren't too concerned with this because they've been messing with his medication and body position a lot today.
  • Hey opened his eyes again today!!! (like a hug from Jesus when that happens!)
  • He actually did have a small seizure today around 2 p.m., but at least he went 12 hours without one. They upped his Keppra (anti-seizure med) again and Lindsey said, "I have a feeling this is his 'sweet spot'." Lord knows her intuition has been right on the money thus far. 
  • The swelling in his face is down. Yay!
  • They continued to give him platelets last night, but haven't had to give him any today. 
  • Blood gases are coming back acceptable. 
  • He now weights 9lbs 6 oz!!! We're gonna have to get him baby spanx :) 
They will be doing another head ultrasound soon. PLEASE pray/send good vibes for those blood clots to be  completely gone! 

:::Insert perfect transition:::

Roller coaster. Good days and bad days. Peaks and valleys. These are phrases we hear a lot from nurses, doctors and other parents/loved ones of Congenital Diaphragmatic Hernia babies (or Cherubs as we call them). And man, so far this week we've been riding Magic Mountain. 

Killian started experiencing seizures Sunday night, after an awesome weekend. The past three days have been very scary and while we have SOOO much to be thankful for considering what happened last week, we can't help but get a bit down every once in awhile. Like I told Lindsey (Killian's mama) today, it's normal to have these emotions but it's important not to stay there for long. 

So, here are some of the things that have lifted us up this week. Hope you find some joy and inspiration in these stories, posts from Facebook friends, scriptures and texts. Lastly, if these two videos don't make you realize we all have something to offer this world or "ugly" cry like I did (can't catch your breath, atrocious facial expression, snot running out of your nose, etc.), then you might be a robot. 
  • Posts on the blog:
    • Our CDH daughter Sofia was given a 10% chance to live. The doctors had no hope, but I had faith and listened to what my heart was telling me. Everyone was praying for her. She was released after a 7 month hospital stay. She is 4 years old now and doing well. First few years were rough, but now its much better.
    • I have no idea what will happen in your case, but as far as miracles go I witnessed a spectaclar one across the room from my daughter in the NICU back in 2008. At first the doctors were telling the mother her child was brain dead. They said there was no brain function at all. The child would respond to her name and open her eyes. She laughed at funny comments. We didn't think the docs were correct. Sure enough the next week they came back saying that there was 30% brain function happening as her brain stem was still working. However within a week they told the mother that it wasn't enough to sustain the child and keeping her on life support was a waste basically. They took out the breathing tube and waited on her to pass away. To their surprise the child continued to breath on her own and remain stable. Within the next several weeks they put that baby in the intermediate care area. After about a month the baby and her mother were released. I've been keeping up with the mom on Facebook and that baby is now a healthy 4 yr old girl. Always trust in the power of prayer. God decides how long we have on this earth, not the doctors. You are all in my prayers and I wish you all the best.
  • My 5-month old Samuel (LCDH) is giving the thumbs up for Killian. He is very proud of baby Killian. He loves to listen how Killian is doing!
  • My daughter Maddie was born with CDH and is doing beautifully if that gives you any hope. She is 7 yrs old.I can remember being were you are my heart breaks for you. Keep the faith in your heart.
  • Jeremiah 17:14
    Heal me, O Lord, and I shall be healed; save me, and I shall be saved: for thou {art} my praise.
  • God healed a little girl 56 1/2 years ago who only weighed 2lbs 4 oz who wasn't supposed to live and be blind and deaf. Now that lady has two beautiful children of her own and loves God with all of her heart. My God did that for me so tell Killian his Aunt Roxie (not technically Killian's aunt -she's mine-) is praying that God will heal him and make him whole...so he can serve Him!! 
  • 2 Chronicles:9
    If calamity comes upon us, whether the sword of judgment, or plague or famine, we will stand in your presence before this temple that bears your Name and will cry out to you in our distress, and you will hear us and save us.
    2 Chronicles:17
    You will not have to fight this battle. Take up your positions; stand firm and see the deliverance the LORD will give you, Judah and Jerusalem. Do not be afraid; do not be discouraged. Go out to face them tomorrow, and the LORD will be with you.
  • This incredible video our dear friend Terry made to inspire us when we were at our absolute lowest. I've watched it a thousand times and still cry remembering our 23 day journey. 
  • And lastly, please take 8 minutes to watch this...this little autistic boy (10 years old) was a throw away. His parents were addicted to drugs and let him go into the Florida foster care system. His uncle came and got him and has raise him ever since. Here he is singing "Open the Eyes of My Heart." 
    • I don't care if you're a Christian, a Muslim, Atheist or other...this should inspire you!!





What inspirational stories do you have to share? 
Love,
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.


Any donation you're able to make will help this sweet baby boy - from getting his family to & from the hospital to helping with Killian's care. From all of us who love Killian and his family, thank you!


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, January 24, 2012

Profound Things My (20 Year Old) Sister Says

Killian update as of 10 minutes ago:
  • At one point, Killian started to desat (meaning his numbers were dropping) so they put him back on 100% oxygen on the ventilator just to be safe. 
  • He is now back down to 66% and doing okay with that. Not the best, but no pain no gain right! We've got to work his little body out a bit, if that makes sense. 
  • He's completely off blood pressure meds! Whoop whoop!
  • The docs have decided to go ahead and start him on the blood thinners, hopefully breaking up the blood clots in his brain. 
  • They had to change his "port" from his right hand to his left hand last night b/c the other one was leaking. You know in the pictures where it looks like he's wearing a boxing glove? That's what they moved. 
  • He's still a little swollen in the face, most likely from the EEG hat he's wearing. 
 Keep praying and sending good vibes for our guy. While we do our best to celebrate the tiny victories, we have to remember he is still a very sick little boy. So don't let up!

Witty narrative starting in 3...2....

I'm sorry, maybe I'm bias, but I think my little sister might be one of the most incredible humans walking the face of the planet. When most people would tuck tail and run, she stepped up to kick some CDH butt!!

Since the day she found out Killian had CDH she has studied the condition mercilessly, learning so many terms that she gives the nurses a run for their money. She also has protected this baby like a lioness, a selfless lioness. When the pressure builds, she remains calm. When negative energy or people try to bring her down, she simply prays. And when all of us begin to get discouraged, she lifts US up. I wish you all could know her. She also has not left Killian's side except to go to church, run home for a change of clothes and to eat dinner a few times....in 21 days. She is truly an exemplary example of what it means to actually be a parent.

So in honor of Lindsey (or win-zee as I often call her), I wanted to share with you...Profound Things My Sister Says:
  • Me saying, "I don't like getting bad news." 
    • Lindsey: It's going to be a long road from here...very long. And there are going to be lots of days that we don't get the best news. Some days we will get better news. But we just have to keep our head up and keep faith. He's going to do great. 
  • Randomly one day
    • You know, I always understood the sacrifice Jesus made for me. But it wasn't until I had my own son that I realized the great sacrifice God made by giving us His son. It's incredible and makes me love Him more than ever.
  • After the prognosis that Killian will most likely be mentally and/or physically handicapped (which we don't believe)...
    • Lindsey:  They kept looking at me like I was going to say, "Oh ok. Didn't realize it was going to be tough. Go ahead and pull the plug." But that's my son. I will love him no matter what.
  • Again talking about Killian's long road ahead...
    • Killian could have easily been born without CDH and also could have still been born mentally handicapped. What would I have done then? Thrown him away? I'm not that selfish.
  • Sunday 1/22 after getting some good reports
    • Lindsey:  Thank God Killian had a great night! ...They thought he wouldn't be alive right now, they must not know the power of my Jesus! So proud of my little boy!
  • When others try to bring her down 
    • Lindsey: I really don't have any energy right now for anything or anyone that isn't the little boy in this room.

  • A post on her Facebook page
    • Lindsey:  All of you that have asked if there is anything you can do to help us, this is how you can help. Take a few minutes and sign this petition. 

  • Just generally rocking her big girl pants :)
    • Lindsey:  How do you know if you have made the right decision? It's when you picked the harder choice and your heart is at peace. 

Not so profound thing my sister said (but it made me giggle):
    • Doctor (name withheld) smells like farts





After getting her epidural :)

Love love love you little one! So proud of you. Keep your eye on the prize...bringing Killian home!
Big Sister, 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.

Any donation you're able to make will help this sweet baby boy - from getting his family to & from the hospital to helping with Killian's care. From all of us who love Killian and his family, thank you!

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, January 23, 2012

Happy 3 Week Birthday, Killian!

We've had 21 days of loving this little boy! As have some of you! We actually joke that Killian has accomplished more in his 21 days on this earth than most accomplish in a lifetime.

  1. He's had too many surgeries to count and he's still here!
  2. He has touched the lives of hundreds, maybe thousands of people around the world (shout out to our peeps in Norway, England and Italy!).
  3. He's made just as many people believe in miracles again (including doctors and nurses-they've told us).
  4. He brought together a family who really without him, had no reason to come together (picture Mom, Dad, step mom, step dad, half brother, step sister, half sister ::that's me!:: and friends new and old). 
  5. And the greatest feat of all, he has brought his mama closer to the Lord, back in the fold and inspired her to listen to her God
To celebrate his birthday, the doctors decided to give him a birthday hat! Our poor guy has been experiencing seizures for the last 24 hours. He may have been having them longer, but they would have been harder to notice on the oscillator.  This hat is monitoring his brain waves. We hope to know more in the next few days. 


His EEG bday party hat!

We think he looks like a character from X-Men, Magneto

Highlights of the day:

  • A head ultrasound showed that there were clots where the blood drains from the head back to the body. 
  • They are going to start him back on blood thinners to help, but will have to close up his repair incision first (they have left it open so that it wouldn't build up unnecessary pressure on his abdomen). 
  • They want to do an MRI, but will have to wait until he is off of nitrous oxide.
  • He's down to 60% on the ventilator! Reminder, this is a good thing. We don't want him on 100% support. 
  • His blood gases continue to come back in an acceptable range. 

Lindsey has already said that we should start planning his 1st birthday party, to which all of you of course will be invited! We're thinking a super hero theme :).

HAPPY BIRTHDAY Killian!!

Love,
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.

Any donation you're able to make will help this sweet baby boy - from getting his family to & from the hospital to helping with Killian's care. From all of us who love Killian and his family, thank you!

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, January 22, 2012

Lessons Learned in the NICU

Let me first begin with the most important items from today. Killian had a positive day! Just got a text from Lindsey with a summary of today's highlights (remember I am now back in FL so posts won't be as frequent or descriptive. If you have a leer jet or limitless funds and would like me to go back to Nashville daily, I would be happy to do that!):

  • Killian is still doing well with the reduction of his blood pressure medicine. To give you a better idea, they started him at 20 on two different meds. Now he's down to nine on both!
  • They got him down to 81 on the ventilator, but then he started desatting a teeny bit so they went up on it again. Nothing to be alarmed about. I think they are still really happy with the progress he made today.
  • They continue to turn and reposition him and we LOVE that! One we get to see new aspects of his handsome little face and two, the first time they tried nine days ago, his lung collapsed. So the fact that he's handling it means he's getting stronger!
  • We have poopies!!! Lindsey said that (stop reading if you don't think tiny little baby poops are adorable!) he had pooped and when they were changing him he continued to poop :). I mean, really, who hasn't done that?
  • The CRP (infection) test was 220 and is now only 60!! We want it around 10, but we're so thankful that it's dropping. 
  • And I don't know the specific numbers, but she said the blood gas draw this evening looked good all around
On to today's narrative...

As I was flying from Nashville to Baltimore, passing the time during a two hour layover, flying two and half hours to West Palm Beach and then driving 45 minutes back to Ft. Lauderdale (I didn't mind at all because I had pushed my flight 3 times to spend more time with our guy) I had some time to reflect on our last 20 days in the NICU at Vanderbilt Children's Hospital and jotted down some words of wisdom. 

For anyone who has been in our position, you'll know what I'm talking about :). These are in no particular order. 

Lessons Learned in the NICU (a lot of these are food related...hmmm?)
  • Laughter is the best medicine.
  • In order to laugh, it is completely acceptable to mildly sexually harass the attractive, young male doctors. They secretly like it. "Dr. Ben, the color of that shirt really brings out the green in your eyes."
  • You can go five days without washing your hair before people outwardly start to judge you. 
  • Take the airplane peanuts when they offer them. You may go 8-10 hours before you realize you haven't eaten and the Southwest honey roasted peanuts at the bottom of your purse could save your life. 
  • Hug the ladies at the front desk of the waiting room and Ronald McDonald Snack room every time you see them. By doing this, you will bring them joy (and get more snacks and fresh coffee).
  • Don't use the hospital tissues in the box in the "Quiet Room" because they are low grade sandpaper. 
  • Hug each other often, and for at least six seconds. 
  • Pray, read the bible and sing (badly in my case) aloud to your baby. 
  • Bring your own towel because the towels in the sleeping room are the size of toilet paper square. 
  • There are no calories in crisis, so eat up!
  • Oddly, in the NICU, your pants will feel tighter. This is in no way related to the previous point. 
  • Ask other families about their babies and pray for them by name (Isayah, Rylynn, Angel).
  • THANK EVERYONE. I'm talking janitors for cleaning up your mess, nurses for being kind and the guy at Ben and Jerry's downstairs who gives you an extra scoop of ice cream because he can see you are puffy eyed and runny nosed. 
  • Stake a claim on the one recliner in the waiting room and defend it with your life- take shifts guarding it if you have to. Think rabid dogs with a bone. 
  • Laugh a lot, cry when you want and learn to be still. 
  • Also, learn to sleep in really awkward positions.
  • It's okay to ask 17 times what the "white number" means...and still not understand. 
  • For a mini praise and worship session, all you need is an iPhone and YouTube. 
  • Sleep and calendars are overrated. "What day did that happen?" 
  • If you sleep eat on Ambien, don't sleep in a room full of snacks (or a waiting room with left over donuts in it).
It's an Ambien Layna sighting! She's like a yeti. No one's every caught her on camera!


MORE PICTURES (trying to do a better job explaining who is who)!!! 
Mommy (Lindsey) and Killian

Lindsey, Grandma Val (Lindsey's Mom) and Baby K!

Lindsey, Ker-Bear (step/second mom who won't let anyone call her Grandma), Dad (Lindsey & Layna's) and Mr. Man.

Uncle Todd (Grandma Val's son) and Killian just chillin'

Grandpa Barry story time (Lindsey's step/second dad). So distinguished with those glasses!

Aunt Layna sleeping creatively 

Killian's stuffed animal collection

Hugs from Florida!
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.

Any donation you're able to make will help this sweet baby boy - from getting his family to & from the hospital to helping with Killian's care. From all of us who love Killian and his family, thank you!

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.






Saturday, January 21, 2012

I Packed a Black Dress

Last Saturday morning back in Fort Lauderdale, I was going through three huge boxes of baby clothes my friend Leslie had given me for Killian when I got this text from Lindsey:

His oxygen sats haven't been very good. They sent some cultures off showing that he probably has an infection. They started him on antibiotics...need some prayers.

My panic level rose. "Calm down, Layna," I told myself. "They said there would be good days and bad days. It's a marathon. It's a marathon." But my soul was unsettled.

As I was crying over piles of baby boy clothes, my phone rang. "Honey, it's dad." I could hear him swallow the lump in his throat. "We're on our way to Nashville right now. He's not doing well."

For the next 36 hours, every time a text came in or my phone rang, my heart would sink thinking, "Is this the call?"

And around 7 p.m. Sunday night that call came. Our father, Killian's PaPa weeped, "We're losing him." I was on the next flight out. And I packed a black dress.

When I walked into Killian's room Monday morning the wind was knocked out of me. He was grey. He was swollen. We were losing him.


Full details of his stats at the time can be found here in a previous post, but in short, our hope was fading, but our faith was strong.

Over the next 24 hours, we began to discuss the details. We had a photographer ready to come in to take pictures. Lindsey had laid out his final outfit. A chaplain came and dedicated him to the Lord.


And as the doctors pushed for her to make her move, she simply said, "I'll know when it's time. God will tell me when it's time." So we waited on Killian. We waited on God.

If you've been following our story, you know what happened next!  Killian had taken a turn that was beyond all medical explanation. As I said on Facebook, a nurse practitioner even cried with us and said the results of his test were "unexpected and incredible".

Wednesday through Friday, his numbers continued to climb. And then Nurse Kendra said, "It's time to make a move. He can't stay on the level of medication and support of machines like this forever. We need to start trying to back him off the oscillator and heart pressure meds." Anxiety was back. "Killian will show us if he's ready to fight more, or go on. I think it's important that we get him in a place where Lindsey can hold him."

And hold him she did!!! Sorry for the shoddy camera work, but a video is worth a million words...



The next two hours were nothing short of...I don't even have a word...


Thanks Nurse Kendra for pushing me!



Me, mommy and Beige (my bunny that mommy slept with for a month before I was born so that I would know her scent)!

Me, mommy and Crazy Aunt Layna (I hate it when she sings to me. It hurts my ears.)
Mommy is a hairdresser so she immediately gave me a mohawk. I'm so cool.

Grandpa Barry has always been jealous of my comfy bed. So the second I was out of it, he tried to take a nap. Silly Grandpa!

With my family who (except for a few trips back and forth to Kansas, Florida and work occasionally) have never left my side. Miss you Aunt Ashley and Uncle Todd! We'll take pictures together soon!

We have never seen Killian more peaceful. And we have never seen Lindsey smile so much. There are no words...



We give ALL praise and glory to our heavenly Father for showing us His might, His grace and His love. And to all of you, for your love, support and prayers.

MORE good news this morning:
  • No chest tube!!! They removed it last night!
  • Decreased blood pressure meds.
  • Blood gas was NORMAL. His oxygen is in the 60s (up from 19!!!).
  • No more fever. Still fighting a bit of an infection, but we know that won't last long.
  • He is continuing to open both of his eyes at the sound of his mama's voice (and Aunt Layna's horrible singing).
Sadly, my blog posts henceforth may not be as descriptive because I have to go back to Ft. Lauderdale tomorrow...with my black dress.

LOVE YOU ALL!!!
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.

Any donation you're able to make will help this sweet baby boy - from getting his family to & from the hospital to helping with Killian's care. From all of us who love Killian and his family, thank you!

All donations go directly to Killian's care and the care of his family. 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, January 20, 2012

Southern Hospitality/Human Hospitality

The kindness we are expereincing both inside and outside of this hospital (our universe) is infectious.
So while we're having just a bit of a quiet day with Killian, waiting to see how he responds to being weened from the osicillator, we wanted to take a moment to highlight some of the other amazing things people have done for our little family unit over the past 18 days.

Please forgive me (Aunt Layna) if I've missed anything! There has almost been too much to keep track of!
  • Tim and Diane Lambert (Lindsey's Aunt and Uncle in Kansas) sent beautiful flowers the day after Killian was born and served as a joyful reminder that this was time to celebrate, not be fearful!
  • Haley and Jeremy Armstrong have supported Lindsey the whole way. In addition to sending an adorable blanket/bear for Killian, Jeremy actually gave Lindsey a job at Backyard Burger when she was pregnant. She was sick often and he allowed her to work only when she could (sometimes only hours a week). Amazing!
  • Linda Crawford is Killian's Brand Manager :). She is a co-worker of Grandma Val's and made all the ladies in Killian's life matching bracelets and the sign on his room. She gave us all sparkly angels to keep at our desks when we can't be here to remind us of him. And she is the one who picked me up to at the airport and drove like a bat out of hell to get me here in time for Killian's repair surgery!
  • Aretha Whitaker, my new sister and Valarie's co-worker, has been one of our spiritual liasons. Aretha attends a HUGE church here in Nashville and has made sure that the might of Mt. Zion Baptist Church is behind us. She is also our Popeyes Chicken and Biscuit provider :)! Thanks for the 1500 calorie dinner!
  • The Military Department of Tennessee sent our family a huge Edible Arrangements that lasted about 5 minutes in the waiting room.
  • Diane Pryor of TEMA, another co-worker of Grandma Val's, brought the family CPK (Caliornia Pizza Kitchen) one night for dinner and has been up here to see us several times. We love us some Diane!
  • Christy & Ricky Hensley have stopped by several times to visit and have been in constant prayer for us.  
  • Melisa Hucks, another co-worker of Val's bought us Chineese food for lunch today! It was deeeelicious! And I'm told...calorie free.
  • Lauren Thomas of Ft. Lauderdale, a dear friend of Layna's, gave Lindsey a $50 gas card to "fuel up the mama express" :).
  • Liz Wolfe, a beautiful, funny, successful friend of Layna's (and VERY witty Paleo/health blogger) has graciously set this very blog up and helps us manage all donations that have come in. This is a lifeline that we know you all appreciate. Way to go Lizzie!
  • To every doctor, nurse, waiting room attendee in this hospital, God bless you.
  • To the friends we have in Neodesha, KS who are calling, praying and lifting us up...we love you.
  • To anyone who is checking our mail, watching our dogs, looking in on our houses, you ROCK!
  • To our family, ALL OF YOU, who have taken time off work, cried with us, prayed with us, called, driven miles to be here (I'm talking to you Ashley Haggard) made countless meals (I'm talking to you Barry Welch), words fall short of describing how much we love and appreciate you.
  • To all of our bosses and coworkers at TEMA, Cobalt Boats, Neodesha School System, Homestead Nursing & Rehab Center and BGT Partners...we hope you know that we couldn't be here without you. You have blown us away with your support by picking up the slack, scooping up extra responsibilities and generously allowing us to take the days off work to be together in this difficult time.
  • To anyone who has stopped by the hospital to give us hugs, bring us snacks, sent food, made a donation or to say a prayer...we are so grateful.
Lastly and most importantly, to anyone who has taken even a second to pray or send good vibes our way, we KNOW you are making a difference, so keep it up. Times are hard, and you have responsibilites so please know that your prayers/positivity are more than enough for us.

Here is a message directly from Lindsey, Killian's mama, herself (she's obviously too busy not leaving his side to chronical all this like me):

I can't begin to explain how grateful I am for all of the prayers, thoughts, gifts, love, and support from all of you that have sent it. As badly as I want to pay it forward right now, I know that God will open a perfect window of time when it's right. But for now thank you from the very depths of my soul.


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.

Any donation you're able to make will help this sweet baby boy - from getting his family to & from the hospital to helping with Killian's care. From all of us who love Killian and his family, thank you!

All donations go directly to Killian's care and the care of his family. 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, January 19, 2012

Odd Day

Today was an odd day. Since Saturday, I'll be honest, our family has been bracing ourselves for what might happen to our sweet warrior. Picture being in a car, going 80 miles an hour, spinning out of control and staring straight at a cement wall knowing there is nothing you can do to stop the impact. You'll feel 1% of what we've been feeling for days.

So when Killian put up those strong numbers yesterday our emotions went from praise--to shock to--whatever this is. Cautious optimism is what we're calling it. It's quiet and inquisitive.

A doctor, a great doctor, told us today that she gives Killian a 5% chance of survival and nearly 100% chance of severe mental and physical disabilities. A nurse asked Lindsey, "Do you know what cerebral palsy looks like?" And because our family was blessed enough to have Joshua Stacy in our lives for the last 21 years (rest in peace sweet angel), she does know. And she doesn't care.

Josh was a bringer of joy. A smiler. A laugher. And though he never walked, never spoke, never fed himself, he was our son, our cousin, our nephew, a friend and a true blessing. He was never a burden. He never had a "low quality of life". And he certainly wasn't a mistake.

So while the doctors are gently telling Lindsey that this might be her future, she just smiles because to her having a child like Joshua is more than okay, it's a calling that is bestowed on a choice few. She is ready for that honor if that is Killian's fate.

Today's highlights:
  • Killian's oxygen level has continued to slowly slowly climb.
  • His lactic acid has crept up a bit, but is still down significantly.
  • His heart rate has fallen to an acceptable range.
  • They turned Killian successfully for the first time! Last Friday they did and his right lung (the strong one) collapsed. We said, "Hello other side of Killian's face! Nice to meet you!" :)
  • The kindness of friends, family and strangers has sustained us in this.
  • Aunt Layna's friend Kyle from high school in Missouri catered in Famous Dave's BBQ and fed not only the Lambert/Welch family, but two other families whose babies are fighting here in the NICU!
  • Another one of Layna's high school friends, Kassandra, earlier this week stopped by with cupcakes, balloons, embroidered blankets and towels and a bag of toiletries for Lindsey to celebrate Killian's 2 week birthday!
  • Layna's work, BGT Partners in Miami, sent beautiful flowers and continues to support her in her decision to be here (and your voice on the ground!).
  • A Facebook friend, Sarah in Ontario, sent a basket of snacks! We can't wait to share the candy with our nurse tonight, Keith!
  • We're estimating that hundreds, if not thousands of people around the world (we're talking Norway and England!) are spreading Killian's story and lifting him and our family up.  
And.......Killian opened both of his eyes for a brief moment.

Love to you all,
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.

Any donation you're able to make will help this sweet baby boy - from getting his family to & from the hospital to helping with Killian's care. From all of us who love Killian and his family, thank you!

All donations go directly to Killian's care and the care of his family. 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, January 18, 2012

Miracles Happening Live at Vanderbilt!

Yesterday was beautiful. Not because Killian's numbers were rising. Not because our hearts weren't breaking. And certainly not because the doctors were giving us hope (on the contrary). Yesterday was beautiful because we all seemed to be coming to terms with what would be happening next.

As of yesterday:
  • Killian's blood gas readings were in the teens. They should be in the 60's.
  • His lactic acid was 9.86. The highest they had ever seen in anyone was 15.
  • His poor little feet were purple from the lack of oxygen circulating in his body and he was visibily in distress.
Lindsey, this young mother, was picking out what outfit to lay Killian to rest in. Why I say yesterday was beautiful is because we were all at peace with it. We sang hymns, read stories, laughed and cried (often at the same time) and just loved Killian to pieces. It was a good day.

But then something happened...

When we woke up this morning, his coloring seemed to be back. His numbers (not official, but on the screen in the room) were better. At one point his heart rate began to drop, and as we all held our breath and held each other, it slowly crept back up on its own, unassisted.

The doctors had stopped running tests on Killian yesterday because they assured us we were at the end. That there was no need to put him through even a blood draw. Lindsey, leaning into her faith like someone from the Old Testament, said, "Something doesn't feel right about what they are saying. I believe in miracles.I want another blood gas drawn."

Here are the results from 1 hour ago:
  • Lactic acid is at 1! AT ONE!
  • His blood oxygen levels are back in the 30's! We still need them in the 60's, but it's a tremendous win!
  • His coloring is back and he is still opening his eyes to the sounds of his mama's voice.
I would be remiss if I didn't say, that the doctors warned us that things could get better before they quickly got worse. But we are RECEIVING IT BY FAITH that for Killian that is not the case. And we need YOU to as well!! Hard!

Also, Killian's numbers have been low for three+ days, which means that there very well could be significant damage to his brain cells, tissue and organs. Again, we aren't believing this is the case and invite you to stand with us in that.

Regardless if this is a fluke or if this is God swooping in at the last moment (He sometimes does that just so you know it was Him), we are thankful for any improvement as we know that it means more comfort for Killian.

We BELIEVE your prayers and positive thoughts are working. Please. Don't. Stop. We love you all!
Love,
Aunt Layna

p.s. Forgive any typos. I want to get back in there with my boy!


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.

Any donation you're able to make will help this sweet baby boy - from getting his family to & from the hospital to helping with Killian's care. From all of us who love Killian and his family, thank you!

All donations go directly to Killian's care and the care of his family. 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, January 16, 2012

Waiting on Killian

I'm not quite sure what to say about this day. So instead of repeating all the things the doctors are telling us to prepare for I will instead rejoice over the following:
  • Even in the midst of this, as his tiny little heart is giving way, he still finds the strength to raise an eyebrow or crack open a lid at the sound of his mama's voice.
  • We have the most amazing circle of family and friends ever to gather together in a time of need, I just know it.
  • He is still and will always be the most beautiful baby boy I have ever seen.
We are just waiting on Killian, our strong, brave little warrior. And no matter what he chooses to do, either fight or go home to glory, he has been a blessing to so many. We are all better for having known him.

Squeeze your little ones extra tight for us tonight. And for all you other CDH mamas, aunts and grandparents out there...DON'T STOP FIGHTING!!!



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.

Any donation you're able to make will help this sweet baby boy - from getting his family to & from the hospital to helping with Killian's care. From all of us who love Killian and his family, thank you!

All donations go directly to Killian's care and the care of his family. 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.






Saturday, January 14, 2012

Onslaught of Helplessness

Killian is 12 days old today. It feels like so much has happened since the last post, some good and some bad. In short, our little man is fighting HARD today and our hearts are breaking for him. They took Killian off ECMO on Wednesday and it'd be an understatement to say it's been a roller coaster since.

The good:
  • He came off blood pressure medication completely.
  • He got his catheter out and has been peeing more. Lindsey even got to change her first diaper!
  • He had one night of peace this week, for which we are beyond thankful.
The things we need you to pray for RIGHT NOW:
  • The doctors discovered that he has an infection, which we're told is not uncommon for anyone (let alone a baby) who has had this many surgeries. He is now on antibiotics and we need them to work fast.
  • His oxygen levels, most likely from the infection, aren't great. Grandpa Garry told me (Aunt Layna) that the doctors are saying that they can't put him back on ECMO, so it's up to Killian now.
  • Family is traveling back to Nashville again (Grandpa Garry & Kear Bear), so please pray that they make it safely and quickly. 
Thank you all for your continued prayers. We'll keep you posted as best we can. 





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.

Any donation you're able to make will help this sweet baby boy - from getting his family to & from the hospital to helping with Killian's care. From all of us who love Killian and his family, thank you!

All donations go directly to Killian's care and the care of his family. 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, January 11, 2012

Not Out of the Woods BUT....

If I even attempted to list all the things our family is thankful for and celebrating, I'd wear my keyboard down! In the face of insurmountable health challenges and bleak doctors' outlooks, he has managed to blow us away with his resiliency, glimmers of personality and dashing good looks!

I know most of you are following Aunt Layna's Facebook updates, but just to summarize:
  • The pulmonary hypertension that was putting pressure on the right ventricle has reduced a little bit. Still not where we want it, but we'll take it!
  • He was off ECMO for 10 minutes yesterday and during that time his lungs DID oxygenate his blood!!! So that means his lungs are at least capable of doing it!
  • He has gone completely off his blood pressure medication.
  • His precious, tiny, little baby lungs are improving every day!
He definitely has a long road ahead of him, and we know there will be good days and bad days, but yesterday was  a GOOD day! And praise the Lord, today is looking the same. :) 


-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.

Any donation you're able to make will help this sweet baby boy - from getting his family to & from the hospital to helping with Killian's care. From all of us who love Killian and his family, thank you!

All donations go directly to Killian's care and the care of his family. 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, January 10, 2012

You Show That Mean Old ECMO Machine Who's Boss!

Kidding. We like the ECMO machine seeing as how it has given our little guy the time he needs to get stronger...but it is now time for him to try and oxygenate his blood on his own or at least try. Here's a snapshot of what is going on today/recap of last night:
  • They gave him surfactant which as I understand it is basically a protein for his lungs. His lungs "liked it" and expanded. We even got some good signs from his left lung!!
  • He coughed! Which is huge! He knocked a couple of clots in his chest loose.
  • They had to give him some blood through the night because the area where they put in his new chest tube yesterday keeps bleeding. But they don't seem too concerned about that and the surgeons will look at it again today. 
  • They've turned up his oscillator (current ventilating machine) in order to start trying to ween him back a little on the ECMO machine. 
  • While they are changing in the circuit out today on the ECMO, they are going to monitor him on the Echo
Say lots of prayers for a miracle today! If Killian responds well to be weened off ECMO, that would be a VERY good thing! 


Love,
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.

Any donation you're able to make will help this sweet baby boy - from getting his family to & from the hospital to helping with Killian's care. From all of us who love Killian and his family, thank you!

All donations go directly to Killian's care and the care of his family. 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.