Killian Kayne - CDH Support

Silent Cries and Big Surprises

2012-02-25T10:23:00.001-08:00

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
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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:

A Night With Killian

2012-02-24T10:36:00.001-08:00

*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:

So Many Things To Be Thankful For!

2012-02-20T18:43:00.002-08:00

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

More about CDH from CHD Support:

The Story of Killian's Kisses at BGT

2012-02-17T18:09:00.000-08:00

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:

Off the Vent for a Bit!

2012-02-16T15:32:00.000-08:00

What an exciting day! I got a text today around 1 p.m. EST from Lindsey that read:

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

More about CDH from CHD Support:

Baby Got Back!

2012-02-14T17:43:00.001-08:00

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

More about CDH from CHD Support:

Pray for His Heart This Valentine's Day

2012-02-12T14:32:00.000-08:00

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

More about CDH from CHD Support:

BGT's Killian's Kisses

2012-02-10T10:41:00.000-08:00

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 "BGTflowergrams" 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's Social Media Coordinator

More about CDH from CHD Support:

In a Valley Today

2012-02-08T17:54:00.000-08:00

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,

Killian's Social Media Coordinator

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

Cute Pictures Inside!

2012-02-07T16:54:00.000-08:00

As his mama says, "He's waving to all of his fans!"

I don't really have anything witty or insightful to write today because the fact of the matter is, life is getting in the way. Isn't it crazy that there are these little babies who are in the world, fighting for every moment because of this terrible condition called CDH and yet emails still come? Laundry still has to get done? Bills have to get paid? If I stop moving long enough to think about it, it actually makes me mad!

But there is also no time for anger, only joy! We're joyful over another day spent with our little angle Killian who all things considering, is doing well. :)

Here are the highlights of last couple of days:

Killian turned five weeks old yesterday!
They removed the "art line" from his hand because they don't have to draw as many blood gases anymore. Lindsey said that it was the cutest thing because it was the first time both of his hands have been free and he immediately moved them both up to his face. Awww...

"Turn the lights out! I'm trying to sleep here!"

He continues to tolerate feedings well. In fact, they've doubled the amount he was getting!

Prayer/positive thought requests:

The heart ultrasound showed no improvement in his pulmonary hypertension . Just keeping it real, pulmonary hypertension is one of the main causes of death in CDH babies. We serve a great big God and we know this problem is not above Him. We really need his heart to stop having to work so hard.
Killian had another seizure today. While we're happy this is the first one in a week, we'd like there to be none ever again! They docs are working on his Kepra (anti-seizure med) dosage.
He has developed Petechiae which is basically small red bumps all over his skin that could be caused by a number of things. Nothing too serious, but still would like that to go away.
He seems like he's really irritable lately. Cause unknown. I'd like to think it's because he misses his Aunt Layna :)
Lindsey said that she's going to request another scan of his brain to test the blood clots soon, so please pray that those are gone!

That's all for now!

Hugs from Aunt Layna

Killian's Social Media Coordinator

More about CDH from CHD Support:

We're So Religious (Not)

2012-02-06T07:11:00.000-08:00

Highlights of the last few days:

Killian made it through another surgery! That's a total of six surgeries now in 34 days.
His incision from the repair surgery is now closed and healing well.
He continues to tolerate his feedings through his feeding tube, allowing him to also take the heart medication he needs to help with his pulmonary hypertension.
His saturation levels are staying close to 100!
He continues to handle being weened down on the vent.
His heart rate has come down which we're praying and believing is a sign that maybe his heart isn't working as hard as it has been.
He continues to grow. In fact, he now weighs 9lbs 5oz! (what a fatty!- kidding)

TODAY is another big day. They will be doing a echo to see how his heart is doing. We desperately need to see some improvement in his pulmonary hypertension as we've been told that he can't survive with his heart working as hard as it has these last five weeks. Please pray/send positive thoughts for a strong strong heart!

On a personal note, I've felt compelled lately to write this lately because we know we have people across the world, of all different walks of faith, rooting for Killian since before he was born. And we love YOU ALL for it!

I'm sure by now you have deduced that Lindsey (Killian's mama), and our family are Christians. We believe in Jesus. We believe in the power of the Holy Spirit. We believe in the power of prayer. And we believe in the peace and healing the Bible tells us God promises to those who believe. That is our truth. And if fact, that is what has gotten us through this hard time.

BUT (non-Christians don't stop reading)!!! We respect that not everyone may believe what we believe. And we are HONORED, truly humbled, that no matter what you believe, you have taken time out of your day to check in on him, send positive thoughts, meditate on his healing and read this blog right now :). Please please don't stop!

I say all of this because I don't ever want anyone to feel turned off by our requests for prayers or praises to God. It's simply the language in which we speak. For us, if our little miracle Killian brings joy or hope to your life (in whatever form) then we are in turned blessed!

So in short dear friends, keep those prayers and positive thoughts coming! I've said it before, but I'll say it again: we know they are making a difference!

-Hugs from 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:

Happy 1 Month Birthday Killian!!

2012-02-02T17:54:00.000-08:00

We cannot imagine life before him, and yet one Mr. Killian Kayne Lambert has only been with us (at least outside of his mama's crock pot) for one month day!!

What a month it has been. I won't do my normal, long rambling and instead will give you the highlights of the day and prayer requests followed by some of the cutest pictures I'm sure you've seen since the last ones I posted. :)

Highlights of the day:

Killian is back up a bit on the ventilator right now, but down from earlier. He's currently on 80% oxygen.
His saturation levels are in the 90s- yay!
He's been tolerating his feedings today!!!!!!!!!!!!!!!!!!! Thank you for all of your prayers/good thoughts there. Keep 'em coming!

Prayer/positive thoughts for:

Keep praying for a strong heart. They will be doing another echo on Monday and we REALLY need there to be some improvement.
He's having surgery tomorrow to close his repair incision. While we're excited about this, it's like any surgery. There could always be complications, infections, etc.
Continue to lift up the doctors, nurses and surgeons who are taking care of him.

And now for the "Awwww" factor...

There he is!!

Holding the bunny mommy slept with for a month to have her smell.

Killian and his binky the nurses made for him!

Seriously, can someone get me to Nashville to see this kid again? I can't stand it!!

We are continuing to turn every blessing back to praise, including this incredible milestone.

Hugs and love from Florida,

Aunt Layna

Killian's Social Media Consultant

More about CDH from CHD Support:

Take that 5%!

2012-02-01T16:10:00.000-08:00

As most of you remember, it was only two weeks ago today that our family experienced a real life, unworldly, defy all medical reason, MIRACLE when Killian Kayne Lambert and our great and glorious God decided to say, "TAKE THAT 5%!"

You see, it was only two short weeks ago that doctors were telling Lindsey and our family that Killian was losing his battle to CDH...quickly. One doctor gave him a 5% chance of survival, applicable to the following 24-48 hours. And here we are....

Two full weeks later, Killian has not only continued to thrive and improve, but has also continued to bless SO MANY with his tenacity and all out adorableness :).

Here are some of the positive things that have happened since my last post (although I want to, I'll refrain from adding an eclamation point to the end of every sentence):

He continued to come down on ventilator and keep his sats high. IN FACT, today he got all the way down to the lowest setting they'll take him on the vent for a while and stayed in the 99-100 range. :::I can't stop myself:::!!!!!!!!
They put in a feeding tube. This is a huge step because...
With the feeding tube they can now give him medication for his pulmonary hypertension which will give his tiny, little, overstrained heart a little back up.
He got himself a head to toe wipe down...by a cute nurse. PLAYER! (this is big b/c CDH babies don't typically tolerate "being messed" with well)
The docs are talking about doing surgery later this week to finally close his repair incision (where they went in and rearranged his organs and repaired the hernia) because things are healing well.
The infection is GONE. To give you an idea...the number relating to the infection needed to be between 10-20. Killian's at its worst was 220...that's right, 220!!! It is now -1. Praise praise praise the Lord!
Lindsey got to hold him again!!!!! (that totally deserves some exclamation points)

Where we need you prayer warriors/visualizers/positive energy givers to focus:

Little man is experiencing some difficulty digesting. This is normal for CDH babies as their organs have been rearranged, irritated, etc. But we know our guy can power through this like everything else he has so far.
Continue to focus on a strong heart. A lot of CDH babies lose there battles not because of poor lung function, but rather because their hearts give out (essentially).
Remember to think on/pray for the nurses and doctors who are giving him such amazing care (even the one who gave him a 5% chance!).
Platelet production. Wish I could add something witty here, but I'm still trying to grasp this one. :)
Blood clots in his brain to dissipate.

We continue to be blown away by the kind messages, donations, offers for food, offers for plane rides (not kidding on this one), encouragement, mail items, questions, concern, well wishes and loving following that this little angel has drummed up over the last four weeks! There are no words...or time in the day to begin to thank each of you individually.

We also like to take a moment and ask that you pray for the families of so many other CDH babies, some of whom have lost their lives this week. Every time we hear that one of these Cherubs has earned his/her wings it takes our breath away. Every single nanosecond that we (AND YOU) get to spend loving Killian on this earth is too precious to wrap our minds around.

It's a long road for Killian. But he's still here. So take that 5%!!

Hugs and 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.

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:

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

2012-01-29T14:26:00.000-08:00

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.

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!
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:

Inspiration Station

2012-01-25T18:37:00.000-08:00

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:

Profound Things My (20 Year Old) Sister Says

2012-01-24T11:35:00.000-08:00

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:

Happy 3 Week Birthday, Killian!

2012-01-23T17:27:00.000-08:00

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.

He's had too many surgeries to count and he's still here!
He has touched the lives of hundreds, maybe thousands of people around the world (shout out to our peeps in Norway, England and Italy!).
He's made just as many people believe in miracles again (including doctors and nurses-they've told us).
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).
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:

Lessons Learned in the NICU

2012-01-22T17:36:00.000-08:00

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:

I Packed a Black Dress

2012-01-21T09:50:00.000-08:00

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:

Southern Hospitality/Human Hospitality

2012-01-20T14:09:00.000-08:00

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:

Odd Day

2012-01-19T19:26:00.000-08:00

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:

Miracles Happening Live at Vanderbilt!

2012-01-18T15:06:00.000-08:00

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:

Waiting on Killian

2012-01-16T14:11:00.000-08:00

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:

Onslaught of Helplessness

2012-01-14T10:15:00.000-08:00

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:

Not Out of the Woods BUT....

2012-01-11T09:58:00.000-08:00

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:

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

2012-01-10T06:03:00.000-08:00

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:

New Chest Tube- Check!

2012-01-09T14:51:00.000-08:00

Killian Kayne, Boy Wonder, has pulled through yet ANOTHER procedure! The docs were not happy with the way the chest tube they put in Saturday was performing, so our brave little guy went under the knife again today.

That's 4 surgeries in 7 days.

Tomorrow is another big day for him. The circuit in the ECMO machine has to be switched out, so while they are doing that, they plan to see how he does for a few minutes off ECMO. Send lots of prayers and good thoughts that he decides to baffle us yet again by his immeasurable strength and rocks that test!

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:

Eyes Wide Open

2012-01-08T09:38:00.000-08:00

What a miracle! Today we got to see Killian open BOTH of his eyes!! And let me tell you folks, I didn't think that baby could get any cuter but he's leaving straight from the NICU for a shoot with GQ :)!

Here are the victories we are celebrating today:

His eyes were open for about 30 minutes and he followed movement, which is a GREAT sign
The left, nearly non-existent two days ago, lung has grown TREMENDOUSLY
His numbers are great and seem to be holding strong
He has officially won over every single nurse in the NICU, probably b/c he bought them all cupcakes yesterday

Continue to pray for:

The nurses and doctors, particularly James, Aneesa, Myron, Erin, Courtney, Dr. Ben, Dr. Martin and Dr. Peach (don't think that's how it's spelled- sorry :))
Our little guy will be here for months, so please pray that God will open doors and lay down paths for Lindsey to be able to stay as close to the hospital as she can
Fluids to drain on their own, continued lung development and a natural settling of his intestines, so that the doctors don't have to go in themselves to rearrange anything

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:

Ups and Downs

2012-01-07T12:56:00.000-08:00

Killian did really well through the night! Following such an invasive, jarring procedure like he had yesterday, we are proud/happy/relieved that he is doing as good as he is.
Unfortunately, we have another battle to fight today. The doctors are seeing some internal bleeding and it's looking more and more like they may need to open him back up (in a different spot) to explore where the bleeding is coming from and stop it.

We are waiting to hear from the surgeon now.

On a happy note, he's moving his little hands and feet and trying sooo hard to open his eyes :). Each reaction we get from him, no matter how tiny, feels like a victory.

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:

Made it through surgery

2012-01-06T15:44:00.000-08:00

Killian means "warrior" and this little fighter has nothing but prove his namesake! From the complicated, immediate intubation and simply thriving to get stable, to now making it through a surgery that required his tiny organs to be rearranged, Killian has continued to bless us abundantly by proving GOD is in control.

The doctors say that he still has a long way to go, but here are some real life miracles we've seen firsthand:

During one of his ultrasounds, doctors thought his lung had melded to his liver. The only two cases where they have seen this before, sadly neither baby survived. We prayed hard and....When they got in there, they discovered that wasn't the case at all with Killian!
We didn't know anything about his left lung as it was blocked by internal organs. After the surgery, we now know that not only is there a little development but also even a small amount of function! The lungs can continue to grow until a child is eight years old, so just having something to work with is amazing!
His heart is strong. His liver looks good. He has opened his eyes. And he even pooped! :) (which is good because it means his organs are functioning)

We need to continue to pray for two major things right now:

That his pulmonary hypertension goes away
That over the next few days he can rely less and less on the ECMO machine

More updates to come! Stay tuned!

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:

Killian Kayne - our CDH Sweetheart.

2012-01-06T06:01:00.000-08:00

Killian Kayne was born on January 2, 2012. Before birth, he was diagnosed with CDH.

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: