Killian Goes Outside For the First Time!!

Holy cow. Just got off the phone with Lindsey and we got some somewhat perplexing news. Mainly because it seems like it came out of nowhere!

I'll cut to the chase, we thought these tests they've been doing on Killian the last few days were to assess whether he would be able to start trying to take a bottle. But today the nurse practitioner told her that it's actually been prep work for the feeding tube, or G-tube...and they are saying surgery may happen as soon as THIS WEEK.

It's not bad news necessarily, it's just unexpected.  Here's what we know:

• Killian is still acting like he's not feeling well at all- crying, de-satting, throwing fits etc.
• After the saliva test and milk test they did they've determined that 
• He's NOT aspirating! YAY!
• But he does have reflux. Boo. (but not uncommon)
• So the thought process is that he's not feeling well because of the reflux
• And before trying to put him on reflux medication, they are thinking the G-tube may help
• The doctors are just as concerned as we are about Killian going under sedation and going back on the vent for surgery to insert the G-tube, seeing as how it took him four tries to come off and stay off the vent 
• So the plan is to do an a spinal block, so that he doesn't have to go under anesthesia
• Another thing...they may have to put in a nissen which as I understand it (which is probably incorrectly! ha ha) is something that he may need to help him not throw up as a result of the reflux
• They are going to do an echo tomorrow to make sure his pulmonary hypertension is gone

And there you have it folks! Aunt Layna Disclaimer: This is ALL still up in the air. Lindsey is going to talk to the doctors tomorrow during rounds to get more details and we'll keep you all posted for sure. Please pray and send positive thoughts that the doctors make the best and right decisions for Killian's care.

It's so nuts that we're to this point! For the last two months it's felt like we were slowly ticking our way to the top of a roller coaster peak. We just may be at the top with it all downhill from here???

So I don't want all of this news in anyway to overshadow what happened yesterday!!


During one of the darkest days, when we were sure that we were losing Killian early in his fragile little life, our family was sitting in the quiet room (crying I’m sure) when we saw a little baby being pulled down the hallway in a wagon. Grandma Val said heavy heartedly, “I want to pull Killian in a wagon.”

Man, I’m tearing up just thinking about it!  I know I sound like a broken record when I talk about how far we’ve come, but BOY AM I GRATEFUL for what happened yesterday!!!

Killian not only got to ride in a wagon for the first time. He got to go outside! Fresh air. Sun. Wind. So many things we take for granted every day. So many things we never in a million years during those dark days believed he’d ever get to experience.  

And here he is….oxygen tank, medicine tree and all. My heart feels like it could just burst!

Lindsey said that he was just in a state of awe the whole time… like he couldn't take it all in. 

People ask me all of the time if developmentally Killian is okay. To be honest, we still don’t know. But what I can say is that for being nearly 5 months old, he’s been in a very depressed environment every day- same room, same walls, same crib. By now, healthy babies been exposed to so much more than our sweet boy.

So we can only hope and pray that this logic rings true: the more stimulation he gets without being overwhelmed, the more alert and developed he’ll become. Blessings. Blessings. Blessings!

Me and my mommy. Look how far we've come! 

Me and Nurse Kendra. She's been with me since the beginning!

Another big part of Killian's day was his milk test. They basically filled his belly full of milk, then they strapped him up like a burrito so he couldn't wiggle around. He had to lay on his back for 14 minutes and then his stomach for 14 minutes. He did great! He digested it all with no aspiration!

Well, it's definitely been an excited last few days! We really appreciate all of your encouraging words, prayers and positive thoughts.

If you're the praying kind, please send some out tonight for the Malkey family, whose little girl is in the hospital with Killian. She's only 4 or 5 days old, on ECMO and hasn't had her repair surgery yet. The doctors told her family today that she has a blood infection and it's not looking good. PLEASE pray that she proves them all wrong...just like Killian has!

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.

The Latest On Killian

We've had some really great weeks over the latter part of April and the beginning of May, so maybe that's why this past week has felt a bit (just a bit) like a punch in the gut.

Don't get me wrong, compared to what we've dealt with in the past, it's a cakewalk. But still enough to give us pause.

Starting around last Thursday, Killian began getting really upset for no real obvious reason. He would cry to the point of exhaustion, seeming almost inconsolable. During these fits, his heart rate would shoot up and he would desat (oxygen levels) from close to a hundred down to the 50's and 60's and stay there for longer than what would be considered normal. He was also getting sick, throwing up multiple times during his fits.

So the guessing game began. Is it withdrawals? Was he weaned off vapotherm too soon? Is there something that's causing him to be in pain?

And why we need your special prayers is, we still don't really know. They are weaning his methadone so slowly that they don't think it's withdrawals and a chest x-ray showed that nothing has collapsed (thank the Lord!).

Now the theory they are working to prove or disprove is it's related to his feedings. Recently they pulled his feeding tube up from past his stomach with continuous feeds to directly in his stomach with feedings for two hours on, one hour off.

They did an upper GI this week and that came back normal, so I guess that's a good thing? Part of me just wishes they could figure it out because at least then we'd know one way or another.

They've talked about doing another test tomorrow that will allow them to watch as he swallows his saliva. Our fear is that Killian, like a lot of CDH babies, could be suffering from acid reflux, which in itself is not too terrible- from what I understand most CDH babies suffer from acid reflux. What we're hoping and praying for is that he's also not aspirating. If he is, we could be heading toward a surgically inserted feeding tube into his belly.

We don't want that if we can avoid it. As I've said before, that means he'll have to go through yet another surgery, be put under and have to go back on the vent. But it's not the end of the world.

The great news is, as of the last couple of days he seems to be acting like he's feeling better. There have been fewer fits and less getting sick. We'll keep you posted on the second test, but in the meantime, here's what we'd love for you to pray about and focus on for Killian this week:

• Please keep the doctors and nurses in your prayers, and that the good Lord would guide every decision they make and that only kind, not easily defeated nurses will be assigned to him.
• Pray that they figure out what is making him so upset and that God willing, it's easily fixed.
• Continue to focus and pray about his development. The speech therapist said that she is concerned about how high the roof of his mouth is from being on the vent so long. 
• I invite you to join us in speaking life to every area of his body that has been affected by his hospitalization. We want Killian to live a full life!! 

While this all may be just a bump in the road, this already really long road we've been on, we will never stop praising our Lord and Savior for the gift this little boy is to us and so many others. He's going to have such an amazing testimony one day!

I of course can't leave you without sharing something else from my trip to visit last week. Killian had a rough day this day and at one point, he pulled out his feeding tube for the second time that day...which apparently made him pretty happy because he was smiley and happy after that. It also could have been because his night nurse that night was as cute as a button and, well, my little nephew is a bit of lady's man : ). Enjoy!! 

                        

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.

Mother's Day In The NICU!

Happy Mother's Day!!! And what an incredible, wonderful, tearful mother's day it is! Ironically enough, it was last year around Mother's Day when I got the call from Lindsey, who was 19 at the time.

"Hey, what are you up to?" she asked. I was walking out of the mall. "Well, guess who's gonna be an aunt?"  It took me a minute to put two and two together. I was scared for her, being so young. I was proud of her that she had chosen the hard path. And I was overjoyed I was going to be an aunt.

We didn't know at that point that Killian would be born with this horrible birth defect called congenital diaphragmatic hernia, that he would be fighting for his life from the very second he entered this world, and we certainly didn't know that Lindsey's first Mother's Day would be spent in the NICU.

But here we are! And we are praising the good Lord for every trial, tribulation and triumph that has brought us to this day. It is only through the grace of God and because of Lindsey, a 20 year old single mother, that we are celebrating Mother's Day.

She made a choice early on to have Killian when some young women her age and in her circumstance wouldn't. When the doctors told her repeatedly that Killian should be taken off life support, she fought them and told Killian, "Tell Jesus you want to stay here with mama." She has literally put her entire life on hold to be here with Killian every single day since he was born.

We went to church together this morning. The pastor said something that almost blew me over. "Jesus, the son of God, could have chosen to enter this world any way he wanted. But God chose to bless us with the gift of our salvation through a mother." He went on to say that moms, next to Jesus, are the second most important people in a child's life. Sometimes men check out...Moms, he said, check in. And she really has.

At one point in the service I looked over at Lindsey and she had tears streaming down her face (I did too by then). "I just was thinking about everything God has done for Killian, all of things that ONLY God can do for him and how God helps him when I can't. And then I am overwhelmed when I think about all God has done for me through Killian."

I am in awe of this person, this perfect combination of a girl and a mom. And I beyond blessed to be able to call her my little sister.

From Day One

To Now...

And some really cute days in between...

Look at the picture one of my favorite nurses helped me make for my mommy for Mother's Day!

I'd be remiss if I didn't mention two other VERY important moms in Lindsey and Killian's lives... there's Grandma Val who has been an absolute rock through this whole ordeal, a woman who other than being hospitalized last week (don't worry, all is fine), hasn't spent more than a day away from Killian since he was born. She's everything a mom could and should be to Lindsey, and one fantastic grandma to Killian!

Holding Baby Lindsey

Holding Baby Killian

And then there is one of the most incredible women I've ever had the honor of knowing, Lindsey's and my step mom (or second mom, as we call her), Kerry Jill. I cannot say enough kind words about this lady. As if loving our father and making him ridiculously happy wasn't enough, she loves Lindsey and I as if we were her very own. She's thoughtful, loving, patient and unfailing in her displays of affection.

And to give you some insight in our awesome (sometimes confusing) family dynamic, she's said since day one that she never wants Killian to call her grandma. Not because she has some age complex :), but because she never wants to take anything away from Grandma Val...and so...here's to you Kerr-Bear! Thank you for being the most awesome second grandma Killian could ever ask for!!

I love snuggling with my Kerr-Bear! 



To my beautiful, funny, brutally truthful, strong, surprising little sister, I can only pray to be one tenth of the mom you are some day. Thank you for never giving up on Killian. Thank you for sacrafising so much. Thank you Lindsey for giving our family one more thing to celebrate on Mother's Day!!!

xoxox Your Big Sister and Biggest Fan,

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.

Report from Nashville!!

Hello friends!

I'm sooooo sorry that I've not been able to post in nearly two weeks! I haven't had a moment to stop and breathe, let alone write much...until now.

I'm here in the room with Killian. He's sleeping and I can't even describe the joy of it all. He is such a miracle! I don't ever want to take for granted how far he's come. And I certainly don't want to become complacent in praying for the road ahead.

As you can see from the FB picture I posted last night, he's one big boy! He's weighing in at 15 lbs 2 oz! He has a full head of fine strawberry blonde hair, that is normally a complete bed head mess. In fact, I'm convinced that he's got one sweet baby mullet :).

When he's happy, he moves his arms and legs so much it's like he's crawling out of his own skin. If you blink you'll miss it, but he smiles from time to time- mostly at the sight of his mama.  And those eyes! My goodness! They are like big, deep icy blue saucers that can't stop taking it all in. I LOVE HIM SO MUCH!!!

Killian has had a rough last few days, but all in all he's still a complete rock star!!

• He is still on his low flow nasal cannula.
• He doing well with the new feeding schedule, which is feed for two hours and then one hour off.
• We continue to be encouraged by his desire to suck on a pacifier or put things in his mouth- hoping that when the day comes to try a bottle, maybe just maybe he'll take to it and won't have to get a feeding tube surgically put in.
• His feeding tube is still NG instead of NJ- meaning that he's getting feeds directly into his stomach opposed to the top of his intestines.
• They've been weaning his methadone, ativan and another med every day (one medicine a day) and he's slowly but surely getting there.
• Occupational and Speech Therapy work with him some on the weekdays and we're over joyed by the small strides he's making.

We do need some prayers though for his withdrawals. For the last couple of days he's been throwing some massive fits, getting sick and de-satting. It's better than when he was withdrawing from morphine, but still really tough to watch. Also, please continue to pray for his mental/physical development, his lungs and his heart. 

Ok, I'm gonna get back to enjoying my day with him! Most posts and pictures to come!!! 

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.

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
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.