Thursday, May 31, 2012

She Took His Burial Outfit Home…Killian Soon to Follow?

The outfit Killian was supposed to come home in, at one point became the outfit we were going to bury him in. It was a white button up, with little teddy bears on it. Lindsey called her stepdad, Grandpa Barry, to bring a sweet little white blanket a friend had made and that outfit to the hospital after the doctors told us it was only a matter of time before she would have to make the call to unplug him from the ventilator and hold her son as he passed.

Joyful tears stream down my face at the thought- that moment never came. And in fact, that little white outfit with blue teddy bears (that Lindsey had bought a size big knowing Killian would be in the hospital for a bit) is back at her home BECAUSE HE’S TOO BIG FOR IT NOW!!! J

I hope you don’t get sick of my dramatic musings and I certainly hope you don’t mind me shouting out praises daily for how far we’ve come!

So if you’re following Killian’s fan page, which I hope you are, you know that yesterday Lindsey had a care conference with the doctors. I will stress that it will still most likely be a good amount of time before Killian goes home, they are at least talking about it realistically and tactfully.

I know I personally am having a bit of anxiety about it.

Please don’t get me wrong, nothing brings me greater joy than the thought of my little sister getting to cuddle with her baby in her own bed. But, as messed up as it might sound this abnormal situation (sick baby in the hospital) has become our normal.

There is A LOT of prep work that needs to happen to bring him home. The doctors talked to her about the house being absolutely as clean as it can be. Spending 90% of her time at the hospital and her part-time job for the last 5 months hasn’t left a lot of downtime for scrubbing baseboards and dusting as I’m sure you can imagine. They even talked about setting up hand sanitizing dispensers everywhere and then of course there is his actual care. 

In prep for his release (still a ways off- I'll stress), the docs ordered an EEG today, even though Killian hasn't displayed any visible seizures. Good thing they did. It turns out they did see some small seizure activity and upped his Keppra dose. 
Just wearing my EEG hat again.
“Who’s going to be watching Killian?” hot Dr. Ben asked her. “Well…me,” she said. “And Barry and mom (Grandma Val)” There is it. A punch in the gut. Not just ANYONE can watch Killian. He can only be with people who understand his condition and what to look for. He can’t go to daycare. He can’t just have any regular babysitter. And even if he could, she’s a single mom. How can she afford that? Plus, people can’t just be coming and going through the house. It has to be as sterile as possible. One single illness could be deathly to our boy.

It’d be real easy to let the panic choke you, but thank God for faith. We know that our heavenly father would not have brought us to this point to forsake us know.

“You know it’s hard to tell if the doctors are being realistic or pessimistic,” she told me after the care conference. “But they told me that based on Killian’s reflexes, they wouldn’t be surprised if he isn’t special needs and might be developmentally challenged.” Uppercut to the jaw. For me anyway. You want to know Lindsey’s response?

“But who cares! I love him so much! And we know (from family experience) what a blessing he is and will be,” she said. “We’ll figure it out. It’s going to be okay.”

Look at my Buddha belly! 
There is such resolve in her voice. There’s no self-pity. There’s no worry. There is only determination to take care of this baby the way he needs to be taken care of. I’m so proud to be her sister. Someday, I’ll write about how far she’s come, but in short instead of making excusing for bad choices she’s made in the past (which she is brutally honest about) she’s embraced the idea of being better because of them.

So prayer warriors and positive thought givers, here are your assignments:
  • Let's focus on those seizures. Even though the blood clots in his head have resolved for the most part, they could be causing it. It could also be neurological. Hopefully whatever is causing them is fixable. 
  • Please pray that the weaning of his medication goes well and according to plan. He has to come off methadone, clonidine and ativan.
  • Pray for his development. The doctor did say that he’s still on a lot of medication. And has been through A LOT. So we're hopeful. If God can bring him back from the brink of death, full restoration of his organs and cells is wink of His eye.
  • That every day that we’re taking a step toward the door, we’re also taking one step toward being prepared for it.
  • Lindsey applied for and was denied disability for Killian. She is appealing that with doctor support, as one of them said he should qualify for 24 nurse care. Please pray/send positive thoughts that Killian and Lindsey get the support they need (we’re not asking for more than we need. Just enough to make it).
  • And if that aid doesn’t come through, just believe with us that God will lay a clear path to excellent care whether it comes in the form of flexible work schedules, qualified volunteers and awesome support from friends and family. 
So CDH families out there, what did you do to prepare for the glorious homecoming? What did you feel? This is new territory for us and we'd love to hear from you either here on the blog or on his page.

Thank you as always for your love, support, kind words, cards, comments, likes and most importantly your prayers and positive thoughts. Love you all. I mean 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.


Monday, May 28, 2012

Quick Update

Happy Memorial Day! Thank you to all of the service men and women who have given up so much to defend our freedom. And a special shout out to Grandpa Garry and Grandpa Barry for their service too! Killian must have climbed out of his crib last night to put this up ;)

Speaking of heros, Killian is mine! He's been doing great since his (surprising) feeding tube surgery on Friday. He's obviously sore, and I would imagine trying to get used to yet another new hole in his body, but we're hoping and praying that  this G-tube, or button, is the blessing in disguise so many of you told us about.

Lindsey said that he is still getting visibly upset from time to time, but he hasn't had a major fit in a while. She also said he seems to be acting like he feels better. Praise the Lord! At one point, when he got upset, she just put on The Lion King for him and he calmed right down. This is especially sweet to me because when Lindsey was little bitty, I remember how much she LOVED The Lion King.

Hakuna Matata! It means no worries, for the rest of your days! 
In other exciting news, Dad and Kerry (or PawPaw Garry and Kerr-Bear) were in Nashville this weekend. I know it killed them to not be able to pick Killian up the way we have been, but they of course had an amazing time with our guy. I know they also experienced what I like to call the "Killian Time Warp", where spending 8 hours in the room with him feels like 10 minutes. Time goes too fast for those of us who live out of town.

Other than that, there aren't any real notable updates. Please pray for him and/or send positive thoughts as they start trying to wean him off his epidural tomorrow. They will take it down to half and give him Lortab. If he tolerates that, then they'll turn it off and give him more lortab and turn it off. They can also give him IV Tylenol to try and manage his pain. Poor baby :(. Also, pray that he adjusts well to having the G-tube and that maybe it will just make him feel better once the pain subsides.

Here are some ADORABLE pictures dad snapped over the weekend. We're thankful for you guys!
Kerr-Bear sings so much better than Aunt Layna!
Sweetly sleeping
Look everyone, NO TAPE on my little face!
PawPaw Garry reading me a story from the bible. I love him so much! 

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.


Wednesday, May 23, 2012

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


Sunday, May 20, 2012

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


Sunday, May 13, 2012

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


Saturday, May 12, 2012

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