Exit Strategy

Hi friends!

Again, apologies I've been slacking lately on blog and facebook posts. One, Killian has been doing GREAT, so there's not a lot to say. And two, for me personally the last week and next couple of weeks are going to be really really hectic. Bear with me! :) I'm just counting down the days until May 11, when I get to go to Nashville and celebrate Lindsey's first mother's day with Killian...and I'm already crying just thinking about it! :)

As I said, Killian has been great this week! Here's the snapshot:

• He's been doing awesome off his nitric! No idea when they'll do another echo, but the one they took last week after he'd been off nitric for a few days still showed NO PULMONARY HYPERTENSION! 
• Side note: I remember praying with all that was within me..."God, we know it's going to be a difficult road. We know he'll most likely have limitations. Maybe he'll have feeding problems or trouble breathing. But please dear Lord, just get him out of the 'death' range. We can deal with difficult. We can't deal with death." This is proof He listens! And everything He does, He does in His time and His way. 
• He's at 3 on his pressures. When he's at 2, they'll start doing things to test his ability to feed without a feeding tube. 
• They continue to slowly (very very slowly) wean his anti anxiety med and his methadone. 
• He is handling the physical therapy well and is getting sort of spoiled by the amount of mama holding time he's been getting. Poor guy went the majority of the first 3 months of his life without being held, so I think he's trying to make up for lost times. 
• Killian pooped on Lindsey this week. Just wanted to let you know! Lol! 

I know that we all (including you) think about Killian coming home. Every time I hear good news from Lindsey, I have to fight the urge to say, "So, have they said anything about when he can come home?" The reason I fight it is because A) Lindsey has enough pressure on her. I'm not going to bug her about because I know it's all she wants, too. B) I would rather be pleasantly surprised to get that call than disappointed if a date is set and not met. 

However....one of our favorite nurses did walk Lindsey through, at a high level, what's left before our sweet boy can get home to that crib that's waiting for him. 

1. He'll be switched to a low flow cannula to replace the vapotherm.
2. He'll have to maintain a low percentage of oxygen support.
3. They have to figure out how he'll get nourishment. Currently he has a feeding tube that runs past his stomach to the top of his intestines. 
1. From what I understand, they'll try to pull the tube up to see if he tolerates feeds directly in his tummy. Many CDH babies have acid reflux and can't handle this type of feeding. 
2. If he does take it, then they'll start trying to bottle feed him. 
3. If he doesn't take the bottle and/or has acid reflux, they'll have to sedate him, intubate him and surgically put in a feeding tube/button around his belly. 
4. Then, he'll have to be extubated and breathe on his own again. If you been following our story, you know that it took 4 times for him to stay off the vent, so the thought of having to go back on scares the poo out of us (well, me at least)
4. I imagine he'll have to go through some physical therapy in the step down unit
5. I'm sure Lindsey will have to take special classes and training to operate any equipment he goes home with and what to do in case of emergencies

We've all learned through this situation to wait, and be patient. God alone knows the time and when it will be right for Killian to come home. Just keep praying and believing with us that we'll soon get there! 

One another note, one of Killian's CDH brothers, Jude is already having his second repair surgery tomorrow. He's only a few weeks older than baby K. The doctors haven't been the most positive with Rose and Brian, Jude's parents. Will you please pray and/or send positive thoughts for this sweet boy and his family tomorrow...that God would be with each doctor and nurse, that peace would befall his parents and family, that the repair will go smoothly, heal quickly and all for the Glory of God! You can follow Jude's progress by joining this group: http://www.facebook.com/groups/219285074818496/ and you can read his full story on his blog: http://babymorrison2.blogspot.com/. WE ARE PRAYING!!! 

Couldn't leave you without some awesome pictures and video now could I? :) 

Lindsey and Grandma Val petitioned the Governor  of Tennessee to declare April 19th  CDH Awareness Day!  At Grandma Val's work, they had refreshments and played an awesome slideshow of Killian pictures!

Lindsey is doing mama duty, putting together Killian's newest toy.

And here are some videos of him enjoying (the heck) out of it!

AGGGG!!! HE'S SO CUTE!!!!! I CAN'T STAND IT!! :)

I hope you all have a great week! I'll do my best to post on his Facebook page at least once a day. Thank you as always for your prayers, love and support!

xoxox Aunt Layna

P.S. Like his fan page to get the daily updates: http://www.facebook.com/pages/CDH-Cherub-Killian/301945533181876
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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:

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.

Not The Most Uplifting Post...

We have been so incredibly blessed this week. I almost can't catch my breath when I stop and think about how far we've come. Here's what's been going on with sweet baby Killian...

• Mr. Man got his feeding tube put down through is nose and seems to be pretty happy about that because the family is getting to see him smile bunches :)
• One of the nurses said he's been getting good "growing sleep"- meaning that when he rests, it's very deep and peaceful. That kind of sleep is really good for his development.
• As you all know (if you're following his fan page), his nitric is OFF!!! It's completely turned off!
• We don't know when they'll do another echo, but we just know that his pulmonary hypertension is still  gone! 
• We are one step closer to the door with these turn of events! 
• Also, they are starting to turn down his pressures. He's currently at 4.5... when he's at 2, that's when they can start trying to do the feeding assessment and determine whether or not he'll be able to feed from a bottle. Please pray that is the case! 
• He's down to 28% oxygen! 

While all of these things are amazing...and we are grateful to the Lord, I personally am having a hard time celebrating. 

I had a mini breakdown yesterday when I read that another baby, Phoenix in England, who we've been following and praying for, lost his life because of this terrible, disgusting, heart wrenching condition called congenital diaphragmatic hernia. 

Here's a message Phoenix's wonderful dad left on Killian's page on April 15:

Good morning to killian, he truly has been inspirational!! We started our CDH journey only a few days ago. You try to prepare for how tough it is going to be but nothing can prepare you for the daily battles. Currently our boy is under going ECMO treatment to give him a rest. I have followed your journey closely and would like to say killian and his family has unbelievable strength. Keep up the good work, Rob. (Father to CDH Cherub: Phoenix Keoni Alec Bentley).

Watching the play by play on Phoenix's page this week brought me back to that dark place we were in January. I wept yesterday, crying out to the Lord, "Make this stop!!" And I would be lying if I also didn't admit that I felt overwhelming guilt. Why has our sweet boy been spared? And why do Robert and Vivian have to bury theirs? Why have so many others had to bury theirs too? Here's Rob's message today:

I would like to thank everybody for their messages of support at such a difficult time. Viv and I take strength and courage knowing that we have so many caring friends and relatives.x x

Baby Phoenix Keoni Alec it is an honour to be your daddy you have taught me so much about life in the short time that we got to spend with you. I will be forever grateful for everything that comes my way. You have been a true inspiration little man!! It pains me that I will never get the chance to do things a father and son should do. I hope you will always be by my side. You will never be far from my thoughts. I will always love you.x x

I know that it's not my place to try and figure it all out. But my God, the weight of it all is crushing. I think that I've been keeping my head down for so long, focused on Killian's recovery and in the light of the wonderful events that happened to us this week, I stopped for the first time to look up. 

So prayer warriors and positive thought givers, your assignment for this evening and this week just got a little longer. Please pray/send positive vibes for the following:

• Pray for peace for Viv and Rob. That God would wrap them in his loving arms and that they make find a small bit of solace in knowing that they will once again be with their dear son, Phoenix Keoni Alec Bentley. 
• Pray for Liam Lyon whose family has been called in to be by his side today. Pray that God would perform a miracle right now in his body! 
• Pray for Jude! Jude and his lovely family have been in this fight longer than we have. Rose and Brian, we draw strength from you daily. Jude is Killian's big brother in all of this! Jude had to be reintubated this morning. 
• Fight Ike Fight! A former coworker/ coheir and conqueror in Christ, Tyler, and his wife got the heart breaking news a short time ago that their son Isaac has cancer. PLEASE pray that God continues to  heal Isaac. Tyler and Amy have displayed such grace and wit even in the bleakest of times. 
• Sweet baby Patrick was just put on ECMO this week. His mama Robyn has been a rock through all of this, even as they parent their other children and set up camp in the Ronald McDonald house as Patrick is being treated far from home.
• Isaiah Wilson has been fighting like a champ for what feels like forever. He's struggling hard right now with that ugly monster pulmonary hypertension. Pray that God will bring the same healing to him that He has for Killian. 
• Lastly, Ryan, the worship leader at my church, recently welcomed his baby boy Jet into the world. Ryan and his wife Julie haven't been able to bring Jet home as he is having difficulty breathing. He doesn't have CDH, but the doctors aren't quite sure what is wrong him him. At this rate, he will be in the NICU for quite some time. You can sign up on this calendar to pray for Jet, Ryan, Julie and their whole family. 

I know I've missed a bunch of you. Sorry to be such a bummer tonight. But I think it is important that we all stop...and look up ever now and again. To any of you reading who have ever lost a child, a brother, a sister, a grandchild, a niece, a nephew... too early in life, my heart is broken into a thousand pieces for you. You honor their memories everyday with the way you love and support Killian and all the other babies out there who are fighting for their lives. 

I've told Lindsey before it's okay to be sad every now and again. The important thing is to not stay there long. So, I will end on a positive note. Look how far we've come....

The first time Killian opened his eyes...he was still on ECMO

To this....

      

Look at our big guy! He's just kickin' it in a room with no nitric machine!! 

Thanks for bearing me with me today. Tomorrow is a new day! Thank the Lord for that!

xoxox
Aunt Layna 

P.S. Like his fan page to get the daily updates: http://www.facebook.com/pages/CDH-Cherub-Killian/301945533181876
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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:

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.

Quick Update and Awesome Video!

Happy Congenital Diaphragmatic Hernia Awareness Day! Well, it's never happy when talking about CDH, but we can rejoice that organizations like Cherubs  are out there pushing for research bills to help find a cause and a cure for this terrible condition! If you haven't already, check out their website for more information about how you can help spread the word.

Sorry I've been slacking this week with the blog updates. Life has just been getting in the way. And tonight will be short, too. Hope I don't lose my best aunt in Florida status :)

Here are the highlights of the week:

• Killian has had a STELLAR week! 
• As you probably know from his Facebook page, the docs did an echo on Tuesday after weaning his nitric and the results....NO PULMONARY HYPERTENSION!!!! 
• They told us that going from 5-0 would be extremely difficult, and that his PH could come back so to get this news just put us over the moon! 
• He's currently at 1 on the nitric and doing great! They'll probably take him to 0 on Saturday. 
• Then they'll do another echo a couple of days later. We would love you to pray and send positive thoughts that his PH stays gone! 
• They will be tweaking some of his other meds this week, so also please pray that goes smoothly. 
• And the big news for today...Killian got his feeding tube put through his nose! This is much more comfortable for him AND we get to see his adorable little face! 
• Lindsey said that now she gets to see him smile :) 
• Also, Lindsey is pretty much getting to hold her son everyday! For all of you out there who can pick your children up freely, please don't take that for granted. Squeeze them often and hug them as long as they'll let you! 

Check out these cheeks!! 

And now...the video! (btw- we think you have to view it from a desktop...won't work on a mobile device. Sorry about that!) It gets good about half way through :)

It's so incredible to watch him dance around, follow objects with his eyes, move his legs and reach for things. PLEASE pray that with the proper amount of physical therapy that Killian will have life and have it abundantly!!

Love you all. We continue to be blessed every single day with your sweet comments, likes, shares, prayers and support. I'll say it for the thousandth time, don't know where we'd be in all of this without you!

Hugs from Florida,
Killian's Aunt Layna 

P.S. Like his fan page to get the daily updates: http://www.facebook.com/pages/CDH-Cherub-Killian/301945533181876
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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:

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.

Grandpa Garry Holds His Grandson!

Happy Sunday friends! Hope you all got your taxes done ;). Killian has had a great week and weekend, but Tuesday is quickly approaching with a big test. Snapshot time:

• Killian has been off the vent for TWO FULL WEEKS! 
• Grandpa Barry and Grandma Val both held him today!
• After they took him off the hydrocortisone (steroid), his heart rate has been normal!
• They have decreased his feeds a little because he was getting chunky :)
• He's getting a new dosing size of his methadone based on his weight and size and he's back to only getting it every 24 hours
• They now think his throwing up spell from this past week was more from withdrawals than anything else. So hopefully this new dosing helps. 
• And get this- lately, Killian has been touching his hands together and putting them in the center of his chest. One of our primary nurses said this is a VERY good developmental sign! Thank you Jesus!
• He's been weaned down to two on nitric oxide (helps his pulmonary hypertension) seems to be doing okay.
• The goal is still to take him completely off the NO by Tuesday and then do another echo to see about his pulmonary hypertension.

So prayer warriors and positive thought givers, PLEASE please focus and pray that Killian's echo comes back Tuesday and says that his pulmonary hypertension is still completely gone! If Killian can stay off nitric and if we can get him to feed from a bottle...well, then Lindsey can put him in his crib at home!

And now, for this evening's narrative :)....

I'm having a hard time figuring out how to write this post without it sounding like my dad paid me to say the things that I'm about to say about him. Rest assured, the opinions expressed here are all my own.

Lindsey's and my dad is the best man I've ever known. Point blank. And I would bet money that if you asked others who know and love him, they'd say the same thing.

He's kind. He's wise. He's patient. He's giving. And boy, oh boy, does he love Jesus, his family, his community, his country, his coworkers and especially his new grandson Killian.

At Lindsey's gender reveal party, she cut into the cake and it was PINK! I immediately went out and bought anything with a ruffle on it that I could find. And while my dad was of course elated that he was getting a grandchild, we all knew deep down he wanted it to be a boy. Aside from his five brothers and my husband, poor dad has been surrounded by women for what I'm sure has felt like forever.

About three weeks after that party, Lindsey called after a routine doctor's visit. "I have two things to tell you....the baby is actually a boy.....and there is something wrong with him. I'm leaving for Cincinnati tomorrow for tests." My heart sank.

So dad, now Grandpa (or PawPaw) Garry, found out that he was finally getting that boy he'd always wanted, but that he may not survive.

Dad has been there every step of the way. Living nine hours away from Nashville certainly doesn't make it easy or cheap, but that hasn't stopped him from being there when Lindsey had her orientation at Vanderbilt, in the room when Killian was born, when the doctors whisked him away the moment he entered the world- dad went with him, when Killian was put on ECMO, when he had his repair surgery, when we thought we were losing him and every other single chance he has gotten since. Dad is there.

During the "dark time" as Lindsey and I call it, and though his heart was shattering into a billion tiny pieces watching his baby girl coming to terms with losing her baby boy, our dad sang praises to God over Killian's bedside. Our dad read scripture and lifted us all up. He read stories to Killian in silly voices. And he promised Killian a four wheeler, a boat, a jetski, a car and every other manly thing he could think of, if only he would just pull through.

And while we're still not out of the woods, as you know Killian made it through the "dark time" (dad has since started saving to make good on the motorized vehicles) and has been making small steps toward the door ever since.

Last week, for the first time in Killian's life and for the first time in dad's life, he got to hold a little boy who is part of him.

Good dose of testosterone! 

(Aunt Layna's fat thumb was covering the microphone- so...umm...just watch!)

Killian enjoyed being in Pawpaw's arms so much, he started getting sleepy!

Me and Grandpa Garry! One of my primary nurses, who is one tough cookie, even started crying when she saw me in Grandpa Garry's arms. :)

Grandpa, don't forget. You said you'd buy me a four wheeler if I got better.

Grandpa Garry with both of his babies!

I got so comfortable, I got a little sleepy.

The whole Lambert crew!

My Grandpa Garry flew Apache helicopters for 20+ years in the army. One day, maybe I'll be a pilot too! In the meantime, I'll just let my crazy family dress me up like one! 

Me, Pawpaw Garry and Ker-Bear! 

Sometimes the blessings just seem overwhelming. How is it that we could be lucky enough to have the parents, step parents and former step parents that we do! Lindsey and I have joked that our dad has made it very difficult for us to date because quite frankly, in our eyes he's darn near perfect. I can't wait for the day that Killian really realizes that, too!

Linds and I love you bunches daddy. Thanks for being the incredible spiritual leader and caregiver that you are to us and so many around you! And thanks for being the best grandpa in the history of grandpas!

And I leave you tonight with the lyrics of an oldie but goody that we sang in church this morning. Goodnight guys. Love you all bunches!

Great is Thy faithfulness, oh God my Father;

There is no shadow of turning with Thee;

Thou changest not, Thy compassions, they fail not;

As Thou hast been, Thou forever wilt be.

Great is Thy faithfulness! Great is Thy faithfulness!

Morning by morning new mercies I see.

All I have needed Thy hand hath provided;

Great is Thy faithfulness, Lord, unto me!

Hugs from Florida,
Killian's Aunt Layna 

P.S. Like his fan page to get the daily updates: http://www.facebook.com/pages/CDH-Cherub-Killian/301945533181876
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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:

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.

Aunt Layna Holds Killian!

First things first, here's the latest on baby Killian:

• Last night Killian threw up a little. The coloring of it slightly alarmed the nurse so they stopped his feedings and did an x-ray. 
• The x-ray showed that his intestines were slightly irritated, but nothing else terrible, so they gave him pepcid.
• This afternoon they went to half feeds and he seems to be doing well. 
• In fact, Lindsey says lately he's been dancing! I can't wait for her to actually catch it on video! 
• He's down to 4 on the nitric!
• His heart rate is running a little high and that has me personally a little concerned, but the doctors seem okay with it so...
• Great news is last night when he got sick they pulled a blood gas and did an infection test and everything came back ok!
• Little champ is down to 31% oxygen and still breathing on his own!!!!

Tonight, please pray send positive thoughts for his pulmonary hypertension to stay gone even while they wean the nitric, for his heart rate to come down and stay down without the aid of medication, that his little tummy and intestines would be settled and for a peaceful night! 

::::Wish I had a graceful transition::::

I had fully intended on writing my next blog post about how Grandpa Garry (Lindsey's and my dad) got to hold Killian this past weekend but, since he got to hold him before me, I'm going to tell my story before his! :) And this story is best told through pictures and video!

I had promised myself that I wasn't going to ask to hold him. I didn't want to put any pressure on Lindsey and I didn't want to put Killian through any unnecessary stress. And hand to God, seeing our dad get to hold him and shed a few tears was enough for me.

So you can imagine my joy and excitement while sitting in the room Sunday when Killian's nurse just turned around and said, "Who's gonna hold him today?" Lindsey just pointed to me and said, "She is."

I bumbled around like an idiot. Washed my hands. Put on the hospital gown. Sat down and opened my arms  and...


He was a little upset. And all those tubes and cords certainly made me nervous.


I was constantly checking his heart rate to make sure he was okay.


And then we found our groove!

Lindsey, Killian and me!

My cheeks hurt from smiling so much. 

I love him so much!!

As my dad said, holding Killian was that answer to countless prayers. It was a reward for buckets of tears. There were days when I never, ever thought we make it to this point. SUCH A BLESSING! What's really nuts, is that holding him now made me miss him even more. Before I missed watching him and talking to him. Now I miss holding him!

And here are some other fun pictures of us just kickin' it- old school. :)

When Killian gets upset, he likes his but patted. 

He's saying, "Hey crazy lady, get out of the way. I want to  look at my mobile!"

This was before actually holding him. I got to help lift him  to change his bedding. 

Diaper time. Aunt Layna's first Killian diaper change. 

I obviously have a lot to learn because I put it on backwards. 

Success!

My husband and I don't have kids of our own yet, but I can't wait. Loving Killian seems like the most natural   thing I've ever done. My husband jokes that now I have the "baby rabies" :)

Hugs from Florida,
Killian's Aunt Layna 

P.S. Like his fan page to get the daily updates: 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.

The Nashville Airport/Praise Report!

I’ve been to the Nashville airport 10 times (coming and going) in the past 3 ½ months. Each time brings its own hodgepodge of emotions. Going before Killian was born it was hopeful and anxious. Leaving while he was still so touch and go while on ECMO was earth shattering/gut wrenching/spirit crushing. Going back just 48 hours for his repair surgery- nervous/petrified/breathless. Leaving 5 days later when seemed stable- back to hopeful and anxious. Getting the call that we were losing him…well, you get the gist.

This time was different. It was like I was coming to visit on my own terms. Other than just pure excitement to see him, there was no sense of urgency, like a have-to-get-there-now-in-case-he-doesn’t-make-it sort of urgency. And when I did get there, I walked in to see this chubby little cherub- eyes wide open and ginger hair a mess (yes, we think he just might end up being a ginger!), looking like a real baby!

The whole time I was there I was like a reporter. Anytime a doctor or nurse told us anything, I whipped out my little yellow notebook to scribble things I thought you’d all like to know. Probably the most important thing is to summarize what it’s going to take to get our boy home. 

And after hearing everything they had to say, and though I’m not a gambler, I would liken our journey to playing a slot machine. It’s like sometimes we get 2 cherries and star, only winning
$25-right dose of pain and anti-seizure meds plus glimmers of mental development. Other days we get a lemon, a lime and an "X"- increased heart rate, difficulty breathing and a fussy attitude. Well, right now we’re up in our winnings but we haven’t hit the jackpot!

Here’s what triple 7's and hitting the jackpot looks like (and what we’re asking that you pray/send positive thoughts for):

• He has to come off the nitric oxide that he’s on to help his pulmonary hypertension. Going from 20-5 on that is no problem, but going from 5- 0 is really really tough. He’s at 5 now. They will be weaning it all the way down slowly over the next month.
• We need his pulmonary hypertension to stay GONE (which it is right now- praise the Lord!) or at least manageable with the oral medication.
• We need his heart rate to come down and stay now in a normal range. It's been running a little high since they began weaning the nitric. 
• He has to get off the methadone. He’s at one dose every 24hours now and doing okay, but Linds said she saw a small tremor today in his leg.
• He has to consistently stay below 40% oxygen.  The whole time I was there he was at 38%.
• He’ll have to do feeding assessment to see if he can handle bottle feeding. They can’t do the assessment until he’s down to at least 2 on his vapotherm (pressures).
• If he has feeding complications, which a lot of babies with congenital diaphragmatic hernia do, he’ll have to get a feeding tube (a.k.a. g-tube or button) surgically inserted into his belly area…. This is scary because he’ll have to be reintubated for that surgery and we just don’t want to do that.
• If that does happen, then we’ll have to see how he handles being extubated again.

It seems like a lot, I know. And to be honest, the way it sounds, he’ll probably be in there for another month or two. We WILL hit a jackpot, friends. I just know it! And to give you faith, here’s my first hand, eye witness praise report from the front lines:

• You know how we thought his pulmonary hypertension was better (from severe to mild)? Well I heard the doc say, “.”Well, now that his PH is gone!!!! Sooo many prayers answered there! Especially when everyone told us there was little to no hope! It could come back now that they're weaning the nitric, but at least we know that he can get better!
• Killian is suckling on his pacifier. The doc said this is a VERY good sign that he just may take feeding from a bottle well because some CDH babies have an oral aversion. And if he’s suckling while on that high of pressure from the nasal cannula, then one would think it will only get better as it goes down, right?
• Developmentally, I think that baby is all there! (watch the video below) He follows objects with his eyes. He recognizes voices (don’t worry, I didn’t sing to him any this time b/c the last time I did he cried terribly!). When Grandpa Garry says, “Hey Buddy!” he perks right up. And sometimes it’s like he’s trying to have a conversation with you (stayed tuned for the cutest video ever of him “telling” Pawpaw Garry a story). Obviously we won’t know for certain until he’s older or has official evaluations but WE KNOW he has a beautiful bright personality and no matter what is true joy to those he’s around.
• Lindsey and I got to see him smile! Like a for real smile! Next to me holding him (blog post to come on that later), that was the highlight of my trip! 
• Grandpa Garry and I both got to hold him! That is that answer to thousands of personal prayers! 
• Because of your generous donations and the money raised byBGT (my employer) Lindsey and the family has been afforded time with Killian-the most precious gift. I truly believe that a lot of his progress can be attributed to the fact that there is a family member in the room with that boy nearly 15 hours a day. So THANK YOU for that! She starts her part-time job next week- yet another prayer answered to find an employer who is sympathetic to her situation. 
• And more praises go out for the prayers for the staff at Vanderbilt Children’s Hospital. We really hit the jackpot with the doctors and nurses who have been taking care of him and moving him forward. 
• I don't have to remind you that they told us about 14 weeks ago that Killian had a 5% chance of survival...and now they're talking about an exit strategy! 

I didn’t think it was possible, but after this weekend I’m even more in love with my family and especially with Killian. From half-sisters and stepparents to biological parents and former stepparents (in my case) we truly are incredibly blessed! Our family dynamic is really a sight- a great one! Each person brings a layer of love that has kept the others going. What a wonderful tapestry our heavenly father weaves!

I won’t lie. I did cry leaving the hospital this time, but they were the happiest sad tears yet. CAN’T WAIT TO GO BACK!!! Especially to get more of these…..

No tape! Look I have mommy's lips!

My Grandpa Garry was an Apache pilot, so my great grandparents got me my own flight suit so I can be just like him! 

My slightly strawberry blonde/red hair is getting long!

Don't do it Aunt Layna, please don't sing to me again. 

I take one quick nap and they dress me up...again! I have my Cherub wings and a cotton tail.

A shout out to all my PEEPS! 

I'm going to really be mad about this one some day.

       

I've discovered ballons...and next to my mobile, I love them more than milk! 

Hugs from Florida,
Killian's Aunt Layna 

P.S. Like his fan page to get the daily updates: 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.

He's a REAL Boy! But We Still Need Prayers!

It's been six LONG weeks since I've seen Mr. Killian Kayne in person. I of course bug Lindsey (his mama/my sister) incessantly for pictures and videos, but nothing compares to seeing this little guy in person. He looks like a REAL baby! I don't mean that to sound harsh, especially since you all know that even with all the tubes in the world, he's still the cutest kid on the face of the planet!

But to walk into his room last night and see him, sans ventilator tube, art line and drip medication tree with full puffy cheeks and perfect pink coloring.... well it was like a little hug from Jesus! :)

Another thing that I'm blown away by is how less breakable he seems. Before, even turning him to an different side was an event. We had to ask a nurse to turn him, hold every line and then wait to see if he tolerated it. Not anymore! Lindsey herself just moves him around, plays with his hands and feet and readjusts him with no hesitation. It's incredible.

And my goodness, I would like to track down the person who invented mobiles set to music and give them a big smacker! If we could all experience a fourth of the joy that little boy gets from watching his mobile (constantly trying his best to get that hippo) the world would be a better place.

And while allllll of this is wonderful and we're giving God all the praise every step of the way we did get a good dose of reality from one of our favorite nurses, Erin, today.

Here's what's happening:

• Killian has been breathing on his own for five full days! And doing GREAT!
• He's now down to receiving methadone about every 12 hours instead of every eight and it's smaller dose. He gets a bit upset around hour 11, but NOTHING like he did coming off morphine.
• They are bringing down his nitric oxide by one a day until he gets to five. He's at seven today.
• Some nurses are reading his last echo and saying they think his pulmonary hypertension (the inability for the lungs to oxygenate the blood and cause his heart to overwork) is GONE!! That's right- GONE!

But..............

Killian is quickly approaching what could be a danger zone. You see the nitric oxide is primarily what is helping his pulmonary hypertension. And they are telling us the wean from 10 to nine to...to eight...all the way to five is no problem. The extremely tough part is going from five slowly to zero.

She said that the battle with pulmonary hypertension is like this: picture a 400lb sumo wrestler on one side and three girls on the other (there were three girls in the room when she was painting this picture). We may gain a little bit of ground and then the sumo wrestler gets more. The important part is that we don't lose too much ground and eventually where him out so he'll give in and go away. She wanted us to be prepared for the following during that crucial time from five to zero:

• He could go in "pulmonary hypertension crisis" which is what we've seen in him before, when he clamps down and essentially cuts off oxygen to his organs.
• His pulmonary hypertension could come back :(
• And if all of this happens, he could need to be reintubated (put back on a ventilator)

So prayer warriors and positive thought givers we must remain vigilant and steadfast in our joint prayers and healing energy that this won't be the case for Killian!!!

According to my calculations, we'll hit that mark Sunday or Monday where things could go sideways. We invite you to stand with us in belief that Killian's transition off nitric will be an easy one!

More stories from the frontline soon! I promise to get pictures and videos up soon too! Love you all bunches! Happy Easter Weekend! We serve an AWESOME God!



Hugs from NASHVILLE!!!
Aunt Layna 

P.S. Like his fan page to get the daily updates: 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.

More Miracles!!

WHOA BABY!!! It's a good thing that blessings don't run out because it feels like we're standing mouths wide open in front of an open fire hydrant of them today! (how's that for visualization!)

Here's what's happening:

• As you all know by now if you're following his Facebook Page , our little man extubated HIMSELF on April Fools Day- no joke!
• He's been doing GREAT off the vent for the last two days. Very few "fits" like he had been having previously off the vent and has required very little extra drugs.
• The weaning of his methadone is going swimmingly with the help of clonadine. 
• And all in all, lately he's just seemed like a happier baby. 

THEN today before Lindsey got to the hospital (she still with him all day, every day) she called to check in on him and they told her they had done another echo to check on his pulmonary hypertension. Keep in mind, we had no idea they were going to be doing this and we were still waiting on the results from the head ultra sound they did on Monday to check on the blood clots in his head. 

The nerves set in. If you've been following his story you know this, but just to recap for our newest friends:

• A lot of babies with congenital diaphragmatic hernia lose their battles with CDH because their lungs don't oxygenate their blood properly, thus forcing the heart to work too hard and eventually give out (also known as Persistent Pulmonary Hypertension). 
• Killian's PH has always been moderate-severe.
• It actually got worse one week and a nurse practitioner (who we love and trust) told us that she's never seen a baby's PH get worse and then actually get better. 
• Well, Killian proved them wrong a few weeks back when his DID get better! 
• But it was only slightly improved...still moderate-severe. 
• He's also had pretty serious blood clots in his head since he was on ECMO. 

MORE MIRACLES AND GRACE FROM GOD

• Today Killian's PH came back on this echo as MILD...THAT'S RIGHT...MILD!!!!!!!!! That's no "slight" improvement folks. That is straight up miraculous! 

AND AND AND

• Bloods clots? Yup, they're resolving!!!!!!!!!!!!!!!!!!!! 

We are just beside ourselves with this news! After shedding a few tears and getting rid of the head to toe goosebumps I told Lindsey that I can't wait to -for years to come- share Killian's story with other CDH mommies and daddies. Killian's life, all three months of is thus far, is a true testament that miracles do happen. He has literally proven almost every doctor wrong. Take that 5%! 

We still have a very very long road, but this sure is a good pick-me-up for the journey ahead. And here's another pick-me-up...video of our sweet boy checking out his mobile, with no breathing tube and apparently working his legs out for this marathon he's committed to winning!


TWO DAYS TIL NASHVILLE!!! Love you all! Really truly mean that. Don't know where we'd be in all of this without you.

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.

Dear Heavenly Father...

What a crazy week it has been, full of ups and downs, tears and smiles. God certainly is refining us through the fire as we lean more and more into him and his will for Killian's life. In case you're not following his Facebook page, here's a play by play:

• Killian was extubated on Sunday and did great for about 2 1/2 days. UP!
• After throwing a few serious fits (holding his breath, clinching his fists, and turning a deep purple), early Tuesday morning his right lung collapsed and he had to be reintuabated. DOWN :(
• They also had to put a chest tube back in which I can only imagine, is very uncomfortable and irritating. DOWN :(
• The docs did a CT scan of his lungs the following day and told us that depending on what they found, they may have to do surgery. DOWN :(
• Results came back and the consensus was...no surgery! UP! 
• Killian himself wasn't very impressed with this news as he continued to act pretty fussy. DOWN :(
• Even after the crazy week he had, his blood gases came back great and they continued to turn down the settings on his vent again. UP!
• Killian started acting like he felt better and continued to show everyone how much he loves his new crib and mobile by kicking his feet and trying to reach for it! This is a very very good sign and we're hoping proves that he has no developmental issues like the doctors were concerned about him having. UP!! (and cute!)
• His chest tube was removed and he is one happy baby again! UP! 
• They started him on Clonadine to aid in the weaning of his methadone. And so far, it's been all good in the hood there! UP! 

Killian's newest doctor (they rotate about every 3 weeks) is talking about extubating him again on Monday. While talking to our dad this week (Papa Garry), I said, "I'm excited, but I'm so nervous. This will be the fourth time that he's been extubated." And dad quickly said, "Honey, he cannot stay where he is. We have to push him."

And so push him they will! I did some intense praying today at church (thank you prayer team at Rio Vista Community!) and I thought I share with you some of things I've been saying to God. Feel free to repeat verbatim or put your spin on it. And if praying is not your thing, please focus healing energy and strength for his heart.

To the creator of the heavens and earth, to the weaver of dreams, to maker of all life, please hear our humble prayer....

Before he was born, Lord you called Killian; from his birth you made mention of his name (Isaiah 49:1).  He was fearfully and wonderfully made by you, oh God. Your works are wonderful in him (Psalm 139;13-14). 

Hosanna, we humbly come before you and ask that you continue to do good works in our precious baby boy, Killian. With Easter upon us we are reminded of how you brought your own son, our savior Jesus Christ, back from the dead, how you restored life to every part of his body. 

We cry out Lord, that you would bring life into Killian's body. Breathe life into his lungs (Job 33:4). Increase your strength in his heart (Isaiah 40:29). Whisper restoration to any organ, any cell that has been damaged (Jeremiah 30:17). 

Jesus lay your healing hand on Killian's chest tomorrow as they doctors take him off the vent again. Ease any discomfort that he may feel. Holy Spirit calm him should he begin to throw another fit. Lift him up Lord so that he can yet again be a testament to your wonder and might. 

We ask that you be with our family and all of our friends who are praying for Killian. Bless each doctor and nurse that has contact with him. Thank you for the blessing that he has become to so many.

And thank you Lord, for your word and that you are faithful to perform it. Indeed Father, we stand in agreement and adoration; Great is thy faithfulness (Lamentations 3:23).

In Jesus name we pray, Amen. 

We will keep you all posted as the information comes in. Can't thank you enough for your love, support and prayers! 


T-Minus 4 days and counting until I'm in Nashville with the family!! 

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.