Killian’s Birthday Present for Aunt Layna

It was my (Aunt Layna's) birthday this weekend.  And even though I was showered with lots of love, great food and awesome presents, it was going to be hard for anyone to top what Killian did and got for me :)

Killian Kayne Lambert is off the vent again!!! He’s such little rock star! 1 Chronicles 16:9 - Sing to him, sing praise to him; tell of all his wonderful acts. (!)

After getting the great news last week about his PH improving a bit, the docs decided to keep pushing him forward. Since then here’s a breakdown of what’s happened:

• He’s completely off the last drip medication he was on
• He’s handling the steroids well. We hope this helps make him even stronger.
• Since going to a nasal cannula, his heart rate has been exactly where it needs to be for the most part and he’s still satting in the high 90s-100! 
• As of right now, he's been off the vent for nearly 2 1/2 days! 

AND, momma Lindsey put clothes on him for the first time and sent me this AWESOME picture for my birthday! 

When I opened the package I cried immediately. Look how stinking cute he is!! And inside the card were his little footprints and a hand print. Incredible!

My birthday wish was just that Killian would have 3 times as many as I have had thus far (I just turned 26…for the third time). Let's all hope, pray and believe that is the case!

Prayer warriors and positive thought givers we aren't out of the woods off the vent yet. Here are your assignments for the next couple of days:

• Killian had another serious fit today like he did last night. When he does this it's very scary because he essentially stops breathing, clinches his fist and his heart rate gets very very high (today it got to 235). We don't know if it's withdrawals, over stimulation or he's trying to tell us something. Thank God, right now, he's back to where he needs to be, but we're always fearful that we're one fit away from something bad. 
• Please pray/mediate on him quickly adjusting and not throwing any fits. The last time, when he extubated himself, it was a strong fit that essentially caused the pneumothorax and forced them to reintubate.
• The move from the breathing tube to the nasal cannula is not a comfortable transition. Even though I’m sure Killian is glad to have that tube out of his throat, it’s all he’s really known. And the docs have told us that the experience of having a cannula is like sticking your head out of a moving vehicle with your mouth open. Please pray for his comfort.
• Continue to focus on that pulmonary hypertension to go away! They are slowly trying to wean the nitric again and we really need his lungs to oxygenate his blood properly so as not to put unnecessary pressure on his heart.
• As always, please lift up the doctors and nurses that they would make the correct decisions for Killian's health. 
• Don't forget to pray for all the other CDH babies and families that are fighting and grieving tonight. For those of us who now know what Congenital Diaphragmatic Hernia, life will never be the same. 

And now, as your reward for reading the blog....some more pictures for your viewing pleasure….

Such a cool dude!

Look guys! No breathing tube!

I’m leaving a week from Thursday to meet up with Grandpa Garry (Lindsey and my dad) and Ker-Bear (our second mom) for Easter weekend in Nashville with Lindsey and Killian!!!! I couldn’t be more excited! Think of all the pictures and stories I'll have then :).

Thank you as always for caring about and loving Killian with us! If you haven't yet, like his fan page to get daily updates! 

Hugs from Florida,
Aunt Layna 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Killian has been fighting - like a champion! - for his life since he was born. Because Killian's family is so spectacular; their friends decided to create this website in their honor to help in any way possible.

We are overwhelmed by the amount of people who have asked for an avenue to help Killian, Lindsey and the family. Any donation made below will go to help pay for food while staying in the hospital, gas back and forth, travel for family and the general care Killian will be receiving beginning on the glorious day he leaves the hospital!

All donations go directly to Killian's care and the care of his family. Also, ten percent of all money collected will be donated to Cherubs, The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support.

 

More about CDH from CHD Support:

CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive. The cause is not known. Over a half million babies have been born with CDH since 2000. CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research.

Great Things Happening!

Well guys, I had a blog entry all written out yesterday morning, ready to post. It was a beautifully written piece (if I don’t say so myself) about how we were of course disappointed that Killian’s echo Tuesday showed no improvement in his pulmonary hypertension, asking for continued prayers, etc.

Good thing I got to THROW THAT POST OUT after getting the call I did yesterday afternoon!!!

Just to recap in case you’re not on his Facebook Fan Page.They did the ECHO on Tuesday morning and gave Lindsey the results Tuesday late in the day that there had been no improvement from the last one…and that last one, had been worse than the one before. We were trying our absolute best to be thankful that it had held steady. A nurse had told Lindsey that once pulmonary hypertension starts getting worse, that it’s pretty much downhill from there. So you can imagine our utter devastation the day it came back worse.  

When she called to tell me the “unchanged” news, I gave it all my might to cling to a bit of joy that it had remained the same, though it certainly wasn’t the outcome I had been praying and crying out for. And after taking a few moments (ok-hours) to wallow in my sadness, I gritted my teeth and took it to the Lord. It sounded something like this….

Heavy Sigh, “Ok, God, I know you’ve got a plan for Killian. That the hairs on his head are numbered. That you never leave his side. And that it will be in YOUR time, not ours, that his fate is revealed. Give Lindsey, me and everyone else who loves him the grace and patience to wait upon you, Lord. We are thankful for the opportunity to lean into you more.”

Fast forward to Wednesday morning (and me still feeling pretty deflated)…Lindsey said, “I’m getting to the hospital as early as I can tomorrow and I want to be there for rounds to talk to the doctor myself.” Hours ticked by and then finally, he came.

He told Lindsey he had some good news. That everyone reads an echo differently, but after he reviewed it and compared it to all the previous ones, that it was his conclusion that KILLIAN’S PH HAD GOTTEN BETTER!! And this doctor is ready to kick it up a notch with Killian’s treatment!

Miracle number 5,498 for Killian Kayne Lambert!! I wish that kid was old enough to buy a lotto ticket! We are over the moon about this news! Now, this by no means means he’s out of the woods yet, but it is the answer to hundreds, if not thousands of prayers! 

Psalm 66:5

Come and see what God has done: he is awesome in his deeds toward the children of man!

We hope you don’t get sick of hearing us say thank you, but if you do, too bad! Cause I’m gonna keep screaming from the rooftops how much we appreciate every.single.one.of.you who have taken even a nanosecond to think about Killian, to pray for him, to visualize his healing. Folks, together we’re putting some good stuff out there in the universe!!

Here’s what’s next for Mr. Man:

·        They are weaning his versed (anti-anxiety) drip this week with the hopes of him being completely off of it by Friday. This is huge because it’s his last drip med and just one step closer to that crib he has waiting for him at home.

·         Today they’ll start him on steroids to help him grow and hopefully get stronger. Little guy is already almost 12lbs! Lindsey and I have made plenty of jokes about the fact that he’ll have “’roid rage”. Our maturity is even more evident when we pair these jokes with our comments about him being on Viagra :)

·         He’s doing so well on the vent that they are talking about extubating (taking the breathing tube out) on Saturday! Our dad, Grandpa Garry, and our Second Mom (we don’t say step-around here) Kerry (Ker-Bear) will be there this weekend in Nashville. So hopefully they get to hear that little stinker cry like I did a few weeks ago!

Here are your prayer/positive thought assignments:

·        They are going to begin weaning his nitric. Last time they weaned his nitric is when the PH test came back worse. BUT that was also the same time that he experience the pneumothorax brought on by withdrawals from the morphine. SOOOOO, pray/send positive energy that as they wean the nitric this time, his lungs begin to oxygenate his blood the way they’re supposed to so that his tiny heart isn’t working as hard.

·         PRAY THAT THIRD TIME IS A CHARM on the extubation. You know they tried once and he lasted about 3 hours breathing on his own. Then, little warrior extubated himself while I was visiting (show off) and lasted nearly 3 days. Let’s join together in believing that this is the FINAL TIME. We can kick that vent to the curb!

·         Keep Grandpa Garry and Ker-Bear in your thoughts as they make the 9 hour drive to Nashville this weekend.

Sheww! I know this was a long post, but one that I am happy to have written again! We are so incredibly blessed. Oh and Lindsey got to hold him yesterday again (I think this is the 5^th time!) for about 3 hours! 

I love sleeping on mommy's chest!

XOXOXO From Aunt Layna

p.s. Lindsey's job interview went well and the lady said she'd be letting her know something this week! Fingers crossed that if it is the right place for her, they'll snatch her up! 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Killian has been fighting - like a champion! - for his life since he was born. Because Killian's family is so spectacular; their friends decided to create this website in their honor to help in any way possible.

We are overwhelmed by the amount of people who have asked for an avenue to help Killian, Lindsey and the family. Any donation made below will go to help pay for food while staying in the hospital, gas back and forth, travel for family and the general care Killian will be receiving beginning on the glorious day he leaves the hospital!

All donations go directly to Killian's care and the care of his family. Also, ten percent of all money collected will be donated to Cherubs, The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support.

 

More about CDH from CHD Support:

CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive. The cause is not known. Over a half million babies have been born with CDH since 2000. CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research.

Heart Ultrasound Tuesday!

Happy day after St. Patty's day friends! And man oh man, I think the luck of the Irish has been with us for the last few days as Killian has been doing really well!

Here's the latest:

• After his heart rate shot up on Thursday night, they started him on antibiotics. And his infection test came back negative yesterday!
• He's been doing so well lately, that they are talking about putting his vent on the setting where it only kicks in if he needs it (CPAP?) next week sometime.
• He's growing bigger everyday, now weighing in at 11lbs 9 oz! 
• Physical and Occupational Therapy came in and gave Killian some gifts- a black and white picture board and a mirror :). Lindsey says that he seems to really like it, but sometimes gets a little overstimulated. I'm just happy that he's responding to them both! I mean, if I was that cute and saw myself in a mirror, I'd get pretty excited too! 
• The docs have been weaning his versed (anti-anxiety) med more and more and may actually move him to an oral equivalent soon. This is important because versed is the last drip med he's on! 
• Lindsey said that he's awake a lot more now that he's off morphine which is great! And she said that she thinks he's starting to figure out how to stay awake in the day and sleep the most at night. This is big news for us because poor guy has been so heavily medicated since the moment he was born that he hasn't known what was normal. 

Tuesday is the big day! They'll be doing an ECHO to check the pulmonary hypertension. We, as always invite you to pray with us or send positive thoughts that it is completely gone. Heck, we'll even take improved. 

I just have a hard time believing that it hasn't! We've had several nurses tell us that there is no way a baby with severe pulmonary hypertension would be doing as well as Killian is, especially at only 30-40% support from the vent. 

Please also pray/send positive thoughts for Lindsey. She has a job interview on Monday at a local salon. Trust me, we wish that she could spend everyday, all day with Killian as she does now, forever but as I've written about before, life just keeps going. Bills still come in. We are just praying that if it is where God wants her to be, that he would open up the right doors. And if it isn't, that he would clearly let her know. 

For those of you who have children, imagine the feeling of dropping them off with a babysitter or at daycare to go to work for the first time. I'm not a mother yet, but I would imagine that it is very difficult at first. There are probably fears about whether he/she is going to like it, if he/she will be okay and I would imagine there is some guilt mixed in there amongst all that anxiety. Well now imagine that you have a very sick baby and every moment with him already feels so fleeting....

So we want to know that where Lindsey ends up is a place that is perfect for her. One that will support her if she needs to be at the hospital with Killian. A place that needs her the right amount of hours, where it is mutually beneficial.

I hope to check back in with you all in a few days with lots of good news...giving all glory to God of course!! But first, I can't sign off without giving you some eye candy :)

Man, these pictures are cool!

Mommy and me looking at my handsome self in the mirror. 

Happy St. Patrick's Day!

I'm a sweet little Cherub and can't wait to share the story about how I beat CDH! 

XOXOXO From Aunt Layna

p.s. If you haven't already, please like Killian's Facebook Fan Page. We post daily updates there! http://www.facebook.com/pages/CDH-Cherub-Killian/301945533181876 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Killian has been fighting - like a champion! - for his life since he was born. Because Killian's family is so spectacular; their friends decided to create this website in their honor to help in any way possible.

We are overwhelmed by the amount of people who have asked for an avenue to help Killian, Lindsey and the family. Any donation made below will go to help pay for food while staying in the hospital, gas back and forth, travel for family and the general care Killian will be receiving beginning on the glorious day he leaves the hospital!

All donations go directly to Killian's care and the care of his family. Also, ten percent of all money collected will be donated to Cherubs, The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support.

 

More about CDH from CHD Support:

CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive. The cause is not known. Over a half million babies have been born with CDH since 2000. CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research.

Dreaming About Killian

Hi friends! I’m so sorry it’s been a few days since the last post. Life keeps getting in the way. But the good news is, Killian, aside from a little hiccup last night, has had an awesome week thus far!

Here’s the latest:

• He’s still completely off morphine with the help of methadone!
• He had a blood gas come back this week darn near perfect, so they weaned his settings back a little more. Way to go bud!
• In fact, his gases have been consistently good, so they removed his pulse-oximeter- one less tube/line on him!
• He seems to be doing well and responding to the physical therapy Lindsey is doing with him. We’re all super happy that she’s getting to bond with him this way :)
• He had a great nurse this week who decided he had been in that dang crib too long so she courageously put him in a bumbo chair (I am not a mom, so I had to look up what that was!) for about 30 minutes and he seemed to enjoy it!

Bumbo Chair. You learn something new everyday! 

So the hiccup and where prayers are needed and good thoughts welcomed:

• Yesterday baby K’s heart was really high for a period of time. They docs speculated that it was due to withdrawals, so please pray for a strong heart and no withdrawals. It's already under so much stress, we just can't afford spells like that.
• He's been more fidgety lately as they wean more medications. We just want him to be as comfortable as he can. 
• They decided to hold off for another week on the echo. I personally am happy about this. After the episode last night, my theory is that it would give a skewed reading anyway.
• AND it means we have one more week to join together in prayer or positive thought giving that his pulmonary hypertension improves...better yet...goes away!!!

I’ve been dreaming a lot about Killian lately. I think it’s a combination of missing him and Lindsey plus the fact I’m trying to stop taking Ambien :).

That terrible night that we thought Killian was going to go home to the Lord, one of the two hours I slept (in a recliner in the middle room with Lindsey and Grandma Val) I dreamt that I heard Killian cry.

Even in the depths of my sadness the next day when all of my hope was gone, my loving, wonderful, faithful father said, “That wasn’t a dream honey. That was a premonition.”

And while I really don’t believe that God has blessed me with the gift of prophesy, eight weeks later, I sure do like the dreams I’ve been having lately!

The second dream I had (after I got back to Florida) was like the last scene out of Steel Magnolias when Shelby’s son is running in the park. 'Member that one? In my dream, I saw a child about three years old, who I knew to be Killian, running toward me with his arms wide open, smiling and ready to give me a hug. He had beautiful, fine blonde hair and blue eyes. He was wearing cute denim overalls. And he was completely, perfectly normal. No handicaps. No tubes. Just a normal happy boy.

In the dream I had last night, Killian was three months old and still in the hospital, but he had pulled out his breathing tube (again-he’s done it once in real life). Lindsey was holding him when I walked into the room. As he sat in her arms, he looked up, touched her face and said, “Mommy! Mommy!” Now, I know most three month olds can’t talk, but again, he was perfectly normal- in fact, extraordinary! :)

So whether they are dreams or glimpses of the future (minus the three month baby talking bit!), we have faith that he will grow, thrive and have life abundantly. 

Sweet kisses from mommy!

My new bed is big enough that she can snuggle with me now!

Now that I'm off morphine, sometimes my tummy gets upset. But mommy just puts her hands on me and it makes me feel better. 

Time for a nap! 

But without faith it is impossible to please Him, 

for he who comes to God must believe that He is, and that 

He is a rewarder of those who diligently seek Him. 

Hebrews 11: 6(NKJV)

Hugs and lots of love from Florida!
Aunt Layna
Killian's Social Media Coordinator

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Killian has been fighting - like a champion! - for his life since he was born. Because Killian's family is so spectacular; their friends decided to create this website in their honor to help in any way possible.

We are overwhelmed by the amount of people who have asked for an avenue to help Killian, Lindsey and the family. Any donation made below will go to help pay for food while staying in the hospital, gas back and forth, travel for family and the general care Killian will be receiving beginning on the glorious day he leaves the hospital!

All donations go directly to Killian's care and the care of his family. Also, ten percent of all money collected will be donated to Cherubs, The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support.

 

More about CDH from CHD Support:

CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive. The cause is not known. Over a half million babies have been born with CDH since 2000. CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research.

Killian Smiles!

Hi friends! As most of you know by now, the docs decided to wait another week before doing another echo on Killian to check his Pulmonary Hypertension. Just more time to pray that we see improvement!

But in the meantime, how is this for improvement!

• Killian is almost completely off his morphine with the help of methadone! Somehow one of his doses of methadone was missed yesterday so baby K did have hard time for a small while but is back on track now. 
• Early Saturday morning the docs reduced the pressures on the vent and the amount of oxygen support he was getting and so far so good!
• There are talks of trying him off the vent again this week since he's doing well on the lower settings and will (fingers crossed) be completely off of the morphine by tomorrow.
• And, what I think is the most exciting, Killian has discovered his own hands and he smiled yesterday!!! 

I would pay cold hard cash to have seen either of those things! "Why didn't you get a picture!" I jokingly yelled at Lindsey. "We were just in such awe of him smiling, we didn't think about it!" Lindsey said :).

Hey, what's that?

Physical and Occupational Therapy came in this week to work with Killian a bit. They showed Lindsey some exercises and massages she can to help him with his motor skill and muscle development. Apparently he likes it, because he's smiling about it! She said he put his hands up to his face and just looked like it was the first time he'd ever noticed them. I love that he's 2 1/2 months old and doing things that most babies would be doing at this time, too. While we know he has a long way to go, even the littlest glimmer of normalcy is like a breath of fresh air!

Look how big I'm getting!

Mr. Bright Eyes!

So lots and lots to be thankful for, but we can't stop praying and focusing on his pulmonary hypertension. Everything else can continue to improve, but unless that goes away or gets better, Killian doesn't get to come home. This week, let's show the PH monster who's boss by praying/positive thoughting it right out of his tiny little body!!! They said they'll do another echo on Friday. We'll keep you posted. 

And let's hope Lindsey can snap a shot of him smiling. I just my pass out from the cuteness!! :) Still giving all praise and glory to our Heavenly Father for getting us this far. Killian will be 10 weeks old tomorrow!!! 

Hugs and lots of love from Florida!
Aunt Layna
Killian's Social Media Coordinator

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Killian has been fighting - like a champion! - for his life since he was born. Because Killian's family is so spectacular; their friends decided to create this website in their honor to help in any way possible.

We are overwhelmed by the amount of people who have asked for an avenue to help Killian, Lindsey and the family. Any donation made below will go to help pay for food while staying in the hospital, gas back and forth, travel for family and the general care Killian will be receiving beginning on the glorious day he leaves the hospital!

All donations go directly to Killian's care and the care of his family. Also, ten percent of all money collected will be donated to Cherubs, The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support.

 

More about CDH from CHD Support:

CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive. The cause is not known. Over a half million babies have been born with CDH since 2000. CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research.

A Crib at Home, Waiting

Glory be to God that we haven't had a lot to report on lately! It's been a quiet last few days for Mr. Killian and after last week, we're thankful for that! Here's the latest:

• Tonight they began weaning his morphine again. Remember last week and the week before he went through terrible, awful withdrawal systems. He went from .23 to .17 tonight.
• To take the edge off and because it's easier to control, they have started him on methadone. Unfortunately, it's just another drug he'll eventually have to be weaned off of. 
• He's satting in the high 90's and is currently at 40% oxygen on the vent!
• His infection is gone! (again...feels like every other week poor guy has to go back on antibiotics)
• He misses his Aunt Layna like crazy. Won't stop talking about me. :)
• He's back on a good pooping schedule! 
• And he's tolerating his feeds well still. 

So people, I probably don't have to keep reminding you that the stupid evil elephant still in our room in this beast we call Pulmonary Hypertension. 

I cannot stress how imperative it is that we see improvement in Killian's PH. A could share a lot of scary articles about PH in newborns or tell you the things certain doctors have told us, but in short as I mentioned before a lot of babies born with congenital diaphragmatic hernia ultimately lose their lives because of it. 

But we believe and know through faith that Killian is destined to be the exception and not the rule!! 

Prayer warriors and positive thought givers here's your assignment for the next couple of days:

• The docs will be doing another ECHO of his heart on Friday.
• PLEASE focus on the PH going away!!! Getting better! Something! Especially not getting worse like it did the last go around.
• That as they try to wean his morphine again that there would be no sickness, no tremors, no fits or silent cries. It's heartbreaking to watch and puts his little body through havoc that we don't want.
• Continue to lift up the doctors and nurses, that they would be led to make the right decisions for Killian's health. 
• I personally ask that you keep Lindsey (Killian's mama/my sweet baby sister) in your prayers and thoughts. Her strength and perseverance are nothing short of miraculous, but even the strong get weary from time to time. She continues to lean into the Lord and prays incessantly, as do we all. Her only focus is that sweet baby. 

About a week and half ago when he was doing so well (even off the vent), for the first time we began talking about his homecoming. We'd been so focused on keeping him with us, that talking about it, like REALLY talking about it, wasn't even on our radar. That same day our family was out at dinner when we saw a little boy throwing a fit in the restaurant. 

"That will never Killian," Lindsey said giggling. "Wait til he's in a highchair sitting next to us, with food all over his face," Grandma Val said. We even took bets on how long before he was home (I said beginning of April). 

And even though that feels farther away than it did nearly two weeks ago, we still have hope! We know, we just know that he's going to make it and we'll get those moments. He's come too far. He's 65 days old today. He has a room with a crib decorated with zoo animals, filled with clothes, diapers, toys and everything else a newborn could ever want waiting for his arrival. 

So please keep praying and believing it with us!!! 

Killian and Mommy! 

Hugs and lots of love from Florida,

Aunt Layna
Killian's Social Media Coordinator

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Killian has been fighting - like a champion! - for his life since he was born. Because Killian's family is so spectacular; their friends decided to create this website in their honor to help in any way possible.

We are overwhelmed by the amount of people who have asked for an avenue to help Killian, Lindsey and the family. Any donation made below will go to help pay for food while staying in the hospital, gas back and forth, travel for family and the general care Killian will be receiving beginning on the glorious day he leaves the hospital!

All donations go directly to Killian's care and the care of his family. Also, ten percent of all money collected will be donated to Cherubs, The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support.

 

More about CDH from CHD Support:

CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive. The cause is not known. Over a half million babies have been born with CDH since 2000. CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research.

Persistent Pulmonary Hypertension

We have so many things to be thankful for! Let's start with the good stuff tonight:

• Killian is back to feeds (no longer on TPN) and up to 27 ML an hour. Sweet boy looks healthy and well fed. :)
• He weighs 11lbs 1 oz! 
• He got a big boy bed today! He has officially outgrown his original NICU bed. 
• They took the IV out his temple and mama got to wash his hair (which she said today looked very blonde).
• Grandpa Garry and Ker-Bear had a great weekend (from Kansas to Nashville and back again) with baby K! 
• KILLIAN TURNED 2 MONTHS OLD this week!! 
• He's at 42% on the vent, .23 morphine and .2 of versed (anti anxiety). 
• His heart rate is staying between 130-160 bpm and he's satting in the high 90's. 

So the not so good stuff (or opportunities to lean into the Lord as we look at them)...

• They doctors had been trying to wean Killian's nitric oxide, which is used to treat persistent pulmonary hypertension . PH in infants in very simple terms means that his lungs aren't oxygenating his blood they way they should and it's putting stress on his heart. 
• When they did an ultra sound of his heart, the PH came back worse than it was before.
• They have gone back up on his nitric since the results came back. The plan is to leave it there for a bit to give him a rest. 
• While we remain positive and faithful, it would be outright lie to say that we aren't scared and heartbroken that there has been no improvement. 
• A lot of CDH babies ultimately lose their battle because of this terrible condition.
• Tomorrow they will be doing a head ultra sound to check on the blood clots in his head.

So dear friends we ask you to please, with all your might, pray and/or send positive thoughts for our little guy, that his body would remain strong and that this battle against pulmonary hypertension be won. Please also pray/send positive thoughts for the blood clots in his head to be GONE! Continue to lift up the doctors and nurses, that they would have wisdom needed to help save our guy. Lastly, please pray that we would not grow weary in our fervent faith. 

(Proverbs 4:20-22 NKJV) My son, give attention to my words; Incline your ear to my sayings. {21} Do not let them depart from your eyes; Keep them in the midst of your heart; {22} For they are life to those who find them, And health to all their flesh.

Hugs from Florida,
Aunt Layna
Killian's Social Media Coordinator

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Killian has been fighting - like a champion! - for his life since he was born. Because Killian's family is so spectacular; their friends decided to create this website in their honor to help in any way possible.

We are overwhelmed by the amount of people who have asked for an avenue to help Killian, Lindsey and the family. Any donation made below will go to help pay for food while staying in the hospital, gas back and forth, travel for family and the general care Killian will be receiving beginning on the glorious day he leaves the hospital!

All donations go directly to Killian's care and the care of his family. Also, ten percent of all money collected will be donated to Cherubs, The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support.

 

More about CDH from CHD Support:

CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive. The cause is not known. Over a half million babies have been born with CDH since 2000. CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research.

Highlights of my Trip to Nashvile (In Pictures)

First off here's the latest on Killian Kayne:

• They are upping his feeds again and he's completely coming off the TPN (nutrition) drip. 
• They are taking out the chest tube today.
• He continues to doing well as they alternate lowering the nitric, morphine and pressures on the vent!! 
• And we'll find out the latest ECHO results later today. PRAY FOR HIS HEART!!! 
• Grandpa Garry and Ker-Bear are there for the weekend! Let see if he shows off for them as much as he did for me :)

So, happy Friday everyone! I'm sorry it's taken me all week to get these up! I tried to figure out a cute story to tell about my time in Nashville last weekend with the cutest baby on the face of the planet and the most amazing mommy/sister the world has ever known, but figured pictures are worth a 1,000 words!

Hey Aunt Layna! I missed you!

I had no pictures with my Aunt Layna without her looking like poo.

Hanging out with my bunny Beige.

Look at these incredible eyelashes!!

Aunt Layna is reading me a book called "Farley Farts" and it makes farting noises.

She is so weird.

My cool new book from Aunt Layna.

Mommy put this up for the nurses so that they know how to take care of me better. Mommy rocks!

Killian's first bath!

Clearing out all the stuffed animals for bath time!

Ahhh, I'm naked! What's happening here!

Mommy is super excited about this! I was pretty stinky.

The bath wasn't too bad, but I fell right asleep in my mommy's arms after.

CLEAN BABY! I sure do love my mommy and my aunt Layna (even though she hurts my ears when she sings to me).

Then, Sunday, I decided to pull out my own breathing tube. I don't need no stinking tubes!

Is Aunt Layna throwning up gang signs? Whatever, she was really excited about me extubating myself!

Hey ma! Can't wait to get out of here so you can hold me all the time!

It was an incredible trip! Killian blew me away with his progress (and cuteness). I'm already saving up and counting the days til my next trip back. Let's hope it's for a "Killian's Going Home" party!!!

God Bless you all! Thank you for your prayers, love, well wishes and support. We couldn't do this without you! 
Aunt Layna
Killian's Social Media Coordinator

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Killian has been fighting - like a champion! - for his life since he was born. Because Killian's family is so spectacular; their friends decided to create this website in their honor to help in any way possible.

We are overwhelmed by the amount of people who have asked for an avenue to help Killian, Lindsey and the family. Any donation made below will go to help pay for food while staying in the hospital, gas back and forth, travel for family and the general care Killian will be receiving beginning on the glorious day he leaves the hospital!

All donations go directly to Killian's care and the care of his family. Also, ten percent of all money collected will be donated to Cherubs, The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support.

 

More about CDH from CHD Support:

CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive. The cause is not known. Over a half million babies have been born with CDH since 2000. CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research.