Friday, December 28, 2012

Almost his 1st Birthday!



Hello dear friends!

Hope you all had wonderful Christmases! Just sitting in the car right now with PawPaw Garry and Kerr-Bear driving through the snowy roads of Kentucky remembering what I felt last year at this time. Killian was coming. We knew that one way or another, life would never be the same. To this extent, we could have never known.

The days leading up to his grand (really grand) entrance were a torturous mix of anxiety, joy and helplessness.  With only a 40% chance of survival in utero, all we could do was pray.  And pray we did.  Then....he was here.

Killian Kayne Lambert. Born January, 2, 2012. Broken. Fighting. Defying.

I remember everything about that day.  The laughs with Lindsey when her water broke (Lake Killian as the nurse called it).  The hard plastic chairs in the waiting room that were unbearable to sit in, let alone try to sleep in.  The preparation for battle- at least that's what it felt like.

Then...the text from dad, "he's here!" The joy and then the sinking, fleeting happiness as the team of nine it took to deliver him then rushed passed, now focused on simply keeping him alive. There were no encouraging looks.  There were no thumbs up. But I did catch a glimpse of his precious face and then I prayed until it hurt.

After hours of equal parts tears and prayers, we met him. Our little Warrior.  We could have never known the blessing he would be to us and so many others. I could have never know how close he'd bring me to my family and my God.

For those of you who know our story, you know that there were many days we never even fathomed a first smile, a first tooth, a first Christmas....or a first birthday.  But guess what folks- HERE WE ARE!!

God is good all of the time! Many of you prayed for us when we couldn't pray anymore and there is nothing we will ever be able to do to repay you!

Aunt Layna is on her way to Nashville for a 1st Birthday Praise Party like you've never seen! Will post lots of pictures soon!! Can't wait!

Xoxo lot of love,
Aunt Layna

Sunday, October 14, 2012

Head to Toes

Hi guys! I don't want to start every blog post with apologies, but I truly am sorry it's taken so long to get an update out there for you. I kinda want to give Lindsey and Killian their privacy now that they are home (3 whole months now!!), but I also think we have a responsibility to inform the world about congenital diaphragmatic hernia and its lasting effects on our children's lives.

The most important news is that on Thursday, October 18th, Killian will be re-intubated. And so we come to you like so many times before asking for some prayers... but don't worry! There are just some procedures the doctors want to do on him that require him to go under. They include:
  • An MRI- this is huge! They will be looking into Killian's neurological development. Please pray with us that the report comes back hopeful!!!
  • A Broncosocopy- this is a scope to check his airways from the inside for the first time. We want them to be really open and clear!
  • A heart cath- this is to check out the pressures in his heart and blood flow. It's also a look more into his pulmonary hypertension (which is still virtually non existant Praise the Lord!) and the stress it may have had on his heart.
Please join us in praising God for the miraculous healing we KNOW he has done and for the positive reports we will get soon after the procedures. Also, we are praying and giving God thanks that Killian is going to come off that ventilator with no problems!! Thank you Lord for your word...

3 John 2"Beloved, I wish above all things that thou mayest prosper and be in health, even as thy soul prospereth."

Since it's been some time since my last post I was trying to think of the best way to update you on what's been going on. So I decided, we'll go head to toes on Mr. Killian :).


Head
1. Well, he is still the cutest little marshmallow on the earth! He's got the bluest eyes that are always filled with such curiosity. And that hair! Man he's got a lot of it!
Look at my pretty blue eyes!
2. From a brain development standpoint, we still don't know how much (if any) of his delays are permanent or simply him just playing catch up. But I can tell you this, he has a light in there. And a sweet personality. And likes (The Lion King) and dislikes. And no matter what, he is the BIGGEST blessing to us and so many others.
Me and Aunt Layna watching the Lion King. I REALLY like Hakuna Matata!
3. Teeth!! He's teething right now and like any healthy baby, not the happiest camper about it, but dang it! Each of those little tiny chicklets coming in his mouth just seem like tiny miracles. At one point we didn't think he'd live and now he has teeth! Aggggg!!! :) 
Give me a steak that I can chew on with these teeth!
4. He's babbling, blowing raspberries and little by little taking more tastes and swallows. He's been to two speech therapy appointments and we feel confident that he'll continue to make progress.


Heart, Lungs and Stomach
1. We'll find out more on Thursday, but so far since coming home, except for the one little hiccup, he's been breathing well still with the assistance of oxygen.
2. His heart from what we can tell is still beating strong! Again, we'll know more on Thursday about that so stay tuned!
3. He still has his feeding tube and he might for quite some time. But for the time being, he does well with his except for constantly playing with it and pulling at it! He even pulled it out once and scared the crap out his Grandma Val and nurse! 
I'm very flexible and like to do "baby yoga" all the time. And I practice my motor skills by trying to remove my feeding tube when no one's looking! 
Hands, Legs and Strength
1. We see improvements everyday in his fine motor skills. He reaches for things and if he drops them, he'll pick them up. Also, when I was in Nashville a few weeks ago, he had a toy that only made a particular sound when he hit it a certain way. Once he figured out how to keep that sound coming, you couldn't stop him from hitting it in that spot! 
2. If you stand Killian up and hold onto him, you can feel him trying to put more and more pressure on his legs. Soon he'll be doing baby lunges! 
Look at me standing up!
3. For so long, we didn't want to push him too hard for fear that he would get upset and collapse a lung. Well no more of that! Lindsey has resolved: if he's awake, he's out of his crib either sitting in his chair working on his abdominal muscles, laying on his belly to try and hold his head up or some other form of physical therapy.

There is not a day that goes by that we don't give God all the praise and glory for saving our little guy. This road is tough and I know I find myself some days getting blue about the fact that he's not crawling, that he's not as alert as other babies his age and trivial things like that, but I only stay there for seconds when I think about how far we've come...and especially when I think about all of the friends we've made along the way who's babies have gone on to heaven because of CDH.

I can play patty cake, but here I just felt like being cute :)

Let us know what questions you might have about living with and caring for a baby with CDH. We want to help!!! And we truly believe that God is working through Killian to make a difference is some people's lives. We're honored to shed light on this terrible condition.

And now I leave you with some serious cuteness!!! Love you guys!

Monkey Pumpkin!

My first time to church. I really liked the music!

Enjoying the autumn breeze..oh yeah, am I'm just chillin in this pumpkin!

Ok, maybe this has gone a little far. :)
xoxox and lots of love!
Aunt Layna

p.s. We'll keep you updated about his procedure on Thursday on his Facebook Page here: https://www.facebook.com/pages/CDH-Cherub-Killian/301945533181876?ref=hl 

Sunday, August 5, 2012

What's Life Like At Home?

Hello friends! Many apologies for the time lapse between full updates!

What's life like at home for Lindsey and Killian? Well, I would say a month in we can describe it as joyful, tiring, exhilarating, stressful and precious all at the same time.

Lindsey has adjusted splendidly to her new positions (in addition to awesome mommy) as nutritionist, nurse and medical equipment expert. As all you CDH parents out there know, it's an overstatement to say taking care of a baby like Killian is a full time job. Between the normal baby things like feedings and naps, Killian also has to receive a long list of medications at specific times of the day.

We had a bit of a scare only 8 days into Killian being at home. He was desatting and just couldn't seem to get caught back up. Lindsey took him to the hospital where they admitted him for 3 days to observe him and get his sats back up. After relentless testing, the doctors could find no real definitive reason the change. We knew that this could happen, but I know I personally wasn't expecting it to be so soon. 

Our family's hypothesis is that Killian was just getting too hot in Lindsey's house. He "runs hot" anyway and was used to a 65 degree hospital room. With the heat in Tennessee this summer, paired with a 20 year old AC unit in Lindsey's house, we just couldn't keep the house cool enough. When Killian is uncomfortable, he cries. When he cries, he desats. And when he desats, sometimes he just can't get caught back up. So for the time being, Lindsey and Killian have moved in with Grandma Val and Grandpa Barry....which I think all are enjoying :). Hopefully when things cool down she can get back into her house.
Napping with Grandma Val!
She does have the help of a nurse 4 days a week still too, which is such a blessing on doctor visit days and when Lindsey has to go to work.  
As far as Killian's progress at home, we are praising God every day for the little things. He really enjoys getting his "tastes" of pureed fruit and we're hopeful that soon he'll be able to swallow a little more. And he weights 20lbs!!! The docs say he's the size of a 1 year old :), even though she's feeding him the recommended amount. 
We continue to see bright glimmers of hope in his development too. Watch this video from a recent visit from PaPa Garry and Kerr-Bear...Kerry was playing "I'm gonna get you" and Killian leans forward almost anticipating her move!

http://s1154.photobucket.com/albums/p538/lovekilliankayne/?action=view&current=b8a36873.mp4 

And check out that buddha belly!!

Killian still has his off days. In fact during this same visit, Dad (Papa Garry) said that the first day you could just tell he wasn't himself. That's the scary thing about having Killian at home. With a "healthy" baby, a cry can just be a cry. Or an off day is an off day. But with Killian, every cry can mean something much more serious. And off days put us all on edge. Luckily, they are becoming fewer and fewer.

I love bath time!
Please continue to pray/send positive thoughts for his developmental progress. Lindsey said he's grabbing his feet a lot more and seems very responsive to sounds and games that she plays with him. He's cooing and babbling a lot more too, however the doctors say he's developmentally a 3 month old.

Happy Baby! 
We have been so encouraged by all of your stories of your CDH'ers catching up once they get home. And we also know that the doctors evaluate Killian in 30 minutes. We spend time with him all day and see him progressing! And ultimately, God is in control. He is the great physician and knows what Killian's life will hold.

So I leave you friends with more videos and pictures and our uttermost gratitude and appreciation for your continued love and support! Please take just a few minutes to visit this site, print out a letter and send it to your congressman if you stand with us in wanting more research behind CDH! http://www.cherubs-cdh.org/bills/

Me and Great Grandma Caroline
Everyone says I look a lot like my Papa Garry! 

Ma, gimmie s'more fruit! 
Please also continue to pray for all of the babies and families who are dealing with CDH. There have been a saddening number of babies recently who've lost their battles. Our hearts go out to each and every person who is affected by this terrible condition. Hug your loved ones for an extra second tonight!!

xoxo 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 general care of Killian, medical expenses and increased bills Lindsey may have as a result of his condition.

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, July 11, 2012

We.Are.Home. - A Story of Miracles

"During the dark days, I never could have even thought about this happening. I couldn't let myself," Lindsey said as we walked to lunch Thursday. "I never entertained the idea that he would actually get better. I just knew that God would tell me when it was time to let him go."

It is that very faith in the Lord that got us to where we are today...HOME!!

I arrived in Nashville Thursday with a laundry list of things I wanted to do. Clean the baseboards. Wipe down the ceiling fans. Stock up the fridge. Our boy is coming home! In addition to my measly 4 days of prep work, Lindsey, Grandma Valarie, Grandpa Barry, Uncle Todd and many others have been like little worker bees preparing the hive for about 6 weeks. 

Our whole family was filled with the joy and anxiousness I'm sure any family feels bringing a new baby home from the hospital, it just turns out, ours is 6 months old :). But I can honestly say that I had no idea the work it takes to bring a baby like Killian home. Along with normal baby things, we had to make sure there are fire extinguishers, that every spec of dust (or best we can) is gone, that everything is disinfected and more. It was a chore!

The three days leading up to Monday were nothing short of amazing. All of us back together again (we miss you Aunt Ashley!), surrounding Killian, but under the opposite circumstances of the past. At one point Lindsey, Dad (Pa Pa Garry), Kerr-Bear (Lindsey's and I's step/second mom) and I stood over Killian praying, thanking God for his life, weeping tears of joy and thinking back upon the dark times we stood together as a family praying over him, crying out to Lord for a miracle. Welp. We sure did get it!

My last full day in the hospital. Hanging out with Grandpa Barry!
Pa Pa Garry can always make me smile. And he's prayed over me lots!
Kerr-Bear, you're always kissing me! But I love it :)
I love me some Aunt Layna cuddle time!
Monday was like a wedding day, graduation day and church service all wrapped up into one! Between all the praying and singing worship songs you would have thought we were at church! Doctors, nurses, waiting room attendants, supply stockers and many more all dropped by to say goodbye, share stories and asked to keep in touch, like high school :).


"We have a lot of ups and downs in the NICU," one of our friends said. "A lot of families don't get to walk out of here with a baby in tow. So we take a lot of joy in seeing this, too."

Joyce was more than a waiting room attendant to my family , she is like family!
Then Monday came. The doctors did rounds as they do everyday, but instead of discussing next steps for Killian they simply said, "No further care for Killian needed here in the NICU."

Lindsey feverishly signed a mountain of papers, including a release form to put Killian's picture up on the "Success Stories" wall. We triple checked all the equipment, medicines, toys, formula, etc. And while Lindsey put the finishing touches on her make up (this is why it felt like a wedding!), Grandma Val put Killian in plaid summer shorts, a yellow polo shirt with a turtle on the bottom, the cutest little sandals you've ever seen, and the piece de le resistance... a matching ball cap (not quite the burial outfit we had picked out 6 months ago). 
I'm stylin' and profile'n. 
Grandma Val, Pa Pa Garry, me and Mommy!
Stop taking pictures and get me outta here!
Let's go!
We were all a little anxious, not because we were worried but rather were experiencing more of a let's-make-a- break-for-it-before-they-change-their-minds feeling. Walking down the hallway was a bit like walking down the alter, too. You've waited for that day, and when it comes, it all happens so fast. (I of course was crying like an idiot the whole time!)


Killian sat so contently in his stroller simply taking it all in, except for the occasional smiles we got as we waited for the elevator, he was super chill. He has the sweetest, most curious personality! 



When we stepped off onto the first floor, we were greeted by pure, concentrated love. A group of Grandma Val's lovely co-workers and friends, some of Lindsey's longest family friends and hospital staff were all there to send us off. There were pictures, signs, decorative lays, lots of hugs, tons of kisses and even more tears. 




Me and my awesome uncle Todd! He's going to be a big help at home.
We even had one very special lady there...Nurse Erin, one of Killian's primary nurses, biggest advocates and most adoring fans came to say goodbye, even though it was her day off. 


Erin always calls me nugget :)
People smiled and looked inquisitively at the balloons tied to his stroller and the sign on the back of it that read: TAKE THAT 5%!


"He's leaving after 6 months in the hospital!" we shouted to anyone in earshot. And we got a lot of "Praise the Lord"s and "So happy for y'all"s (we are in the South you know). We even had people we didn't know coming up to take pictures and hopefully spread his story of hope to others.

Grandma Val helped as Lindsey strapped Killian into his car seat and then she scurried to the other side of the backseat. Soon we saMonroe Carell Jr. Children's Hospital at Vanderbilt in our rear view mirror. It felt like a dream!


Watching Killian watch the outside world just might be one of the coolest experiences of my life. He'd look outside, then look back at Lindsey like, "Mom, do you see that?!" and then he'd smile. I laughed and cried when Linds  randomly exclaimed, "Oh my God, I'm in the backseat of a car with my son!" Precious!!




Killian came home to as much fanfare as he did leaving the hospital! We wanted it to be like bringing a newborn home. Along with a huge stork balloon, there was a sign in the yard that read:


IT'S A BOY!!
Name: Killian Kayne Lambert
Born: January 2, 2012
Weight: 17lbs 2 oz
Length: 27 inches 

Ha ha! Bet the neighbors where scratching their heads about that one! All of his baby things were lined up in the living room amongst a bevvy of balloons, streamers and an in home nurse.


That's right folks! We found out on Sunday that Killian qualifies for in home care- 12 hours a day! Not that Lindsey needs it though. This girl knows her stuff! I'll write a post soon about the excellent and inordinate amount of care she gives and will give Killian daily, but for now, it's such a blessing to have back up.

We unpacked his oxygen tanks, set up his Kangaroo Joey feeding pump, filled his Pack 'N Play with familiar toys and then......we just enjoyed him!
My first night at home! I have so many new things to experience and man, I'm a happy boy!
His first night at home was a raging success! Killian REALLY likes his own crib and Lindsey said he woke up so happy Tuesday morning. Little stinker was napping next to his Aunt Layna as I wrote most of this entry after we watched Clifford The Big Red Dog together :). It feels so right to have him home.

A lot of you have expressed concern that now that Killian is home, we'll stop the updates. Don't fret! Talking about this kid is like breathing for me! Our posts on his Facebook page and entries in this blog may become less frequent, but we'll definitely still keep you up to date on what is going on in his life. You have invested too much to be left in the dust now!! And unfortunately our journey with CDH is just beginning. As an education platform, it's important that you know the lasting, horrible problems this condition carries.

So that's it folks! Boy they ain't kidding when they say it takes a village to raise a child. This is going to be tough. And like I said, our battle with CDH is FAR from over, but right now, today, we are relishing in this victory and praising Jesus with all we have in us!!!


Psalm 107:28-30 Then they cried to the LORD in their trouble, and he delivered them from their distress. He made the storm be still, and the waves of the sea were hushed. Then they were glad that the waters were quiet, and he brought them to their desired haven

Sorry for the ridiculously long post! We love you all and we are so grateful for the loving support and comments! Talk to you soon :)

xoxo Aunt Layna

For those of you who may just now be learning about Killian's story, and in order to grasp the full magnitude of the miracle he is, you should probably know the following:
  • Killian was diagnosed in utero at 20 weeks with Congenital Diaphragmatic Hernia. The earlier in pregnancy, the worse the case. At that point he was given a 40% chance of survival.
  • January 2, 2012 he was born into a fury of emergency surgeries and life saving treatments. The doctors were not very hopeful.
  • After 24 hours on this earth, Killian had to undergo ECMO as a means of oxygenating his blood because at the time, his broken, bruised body couldn't do it itself. 
  • While on ECMO, Killian had surgery to repair the hole in is diaphragm and to rearrange all the internal organs that were displaced. 
  • Soon after coming off ECMO (8 days later), Killian's body began to shut down. They doctors told Lindsey he had only a 5% chance of survival. 
  • She signed a DNR (do not resuscitate), picked out his burial outfit and waited upon the Lord to guide her.
  • To everyone's dismay, he started to show improvement , though the doctors told her even if he lived, he'd be severally mentally handicapped and/or paraplegic. 
  • When it was apparent that storm had passed and he showed signs of positive development, another storm blew quickly in. Pulmonary Hypertension. At one point Killian's began to get worse and the doctors said, "This is the end. We've never seen PH get worse and then get better, let alone a baby survive."
    • We know because of the prayers from so many and because we serve an awesome God, his not only improved- it went away.
  • We encountered numerous other bumps in the road (collapsed lungs, 4 attempts to come off the vent, inability to swallow formula which resulted in a G-tube) from then til now.
  • BUT, Killian is now HOME and enjoying life outside of the NICU. 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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 general care of Killian, medical expenses and increased bills Lindsey may have as a result of his condition.

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.


Friday, July 6, 2012

Bittersweet

I cannot believe that I'm back here...in this waiting room... in this hospital...writing to you from the very seat I wrote my post about Killian's journey. I read that post now and just so desperately wish I could hold that family from 6 months ago and tell them, "One day, you'll walk out of here together." I don't think the Layna of 6 months had the strength to believe that!

My heart feels heavy this evening though because even now, as we're preparing (feverishly) for Killian to come home, there are families in this waiting room whose journey has just begun. We even saw a family who we met in January and they have been here since November. One family just rushed out because another member came in and said, "She just opened her eyes! She opened her eyes!" I remember that day.

My heart is also heavy watching Lindsey take care of Killian. He'll be going home on 6-7 medications, with an oxygen tank and a feeding tube. I saw her caring for him today and said to Grandma Val, "I just want it to be normal for her."

"What?" she said.

"Caring for him."

When he needs to burp, she can't just sit him up and pat his back. She has to get a syringe and suck the air that's in his belly from a feeding tube. It just little things like that I wish either of them didn't have to go through.

But alas! This is our normal now!!! And we are thankful for it.

This won't be long because I want to get back there with the family but here's what's going on:
  • Killian has been just a little off the last few days and his primary and Lindsey think it's because they took him off his B6. They have printed out articles and medical research to plead their case tomorrow to get him back on it and to go home on it.
    • Please pray that if that is God's will that it will happen!
  • He's still great though! And Lindsey has gone nearly 15 hours caring for him with little to no help from the nursing staff.
  • We're all working hard to prepare the house for his homecoming, stocking them up with supplies, cleaning, etc.
Love you all bunches! We're almost there!!
xoxox 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.


Sunday, July 1, 2012

Going Home in 8 Days!!!

Dearest Friends,

I am so sorry that it's been a while since the last blog post. To be honest, we've had so many great things to write about and share, but I didn't want to jinx anything and we're still trying not to! Remember that post sometime back where I said we were cautiously optimistic, well we have been back there, being very very cautiously optimistic.

And if you've been following Killian's Facebook fan page, then you know that we have date for discharge from the hospital!!! On July 9th, after 188 days in the hospital, 9 surgeries, 3 collapsed lungs, 2 pneumothoraxes, 4 attempts to come off the vent... our sweet precious warrior  Killian Kayne Lambert (Killian means warrior and fierce mighty one) is coming home!!

I swear the last few weeks we have all run the gamut of emotions from relieved, to nervous, to anxious, to determined, to blissful and grateful. It all feels so surreal.

I cried my eyes out in church today when we sang "How Great Thou Art" and when I heard "How Great is Our God" not only because the words ring with soul shaking truth, but also because those are the two songs I sang to Killian the first time he opened his eyes.

We still needs lots of prayers and positive thoughts!! Here's what's going to happen over the next week:

Today- He got the last of his immunizations 
Monday- 6 a.m. he'll get his last dose of clonidine 
Tuesday- They are going to turn off his B6
Wednesday- Observation day
Thursday- Aunt Layna arrives!
Friday- Lindsey moves to the step down unit and stays with Killian with little to no help from nursing staff to make sure she can feed him through his feeding tube, change the dressings, administer his medication, etc. And PawPaw Garry and Kerr-Bear arrive.
Saturday-Another day in the step down unit
Sunday- Observation
Monday- (knock on wood and LOTS OF PRAYERS) We bring our boy home!!!!

I said this the other day on his page too, for every one of you who have laughed with us, shed tears for us, prayed for us, sent cards/clothes/supplies, donated money, sent positive thoughts, shared his story and have believed in Killian...this is your victory too!!!


1 Corinthians 16:13 Be on your guard; stand firm in the faith; be courageous; be strong.

In my stroller practicing for Monday July 9!
Just being cute. You know how I roll.

Love you all!!! 
xoxox 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.


Monday, June 18, 2012

One Step Closer to the Door!

I find myself worrying a lot. Worrying about Lindsey and her situation. Worrying about Killian and his development and health issues. Worrying about the influences they both have and will have in their lives.

But Father’s Day yesterday helped bring me back down to earth. I walked into church full of anxiety and as the music started, I closed my eyes to pray. Immediate comfort came from my Heavenly Father, that HE is also Killian’s and Lindsey’s father. He loves them both so much! Something I always knew, but just needed to be reminded of. And as long as they stay close to him, he will always be there to fill any void, to wipe away every tear and turn every tragedy into triumph! What an awesome Father we have in him!

And Killian is living proof of his love, mercy and grace. Here’s what’s been happening with our guy:
  • Killian is handling his weanings so well
  • He’s currently only getting methadone (around .24) every 12 hours.
  • There are plans to have him completely off of methadone this week!
  • After that, all that’s left is getting him off the clonidine and his primary nurse doesn’t think he’ll have any trouble with that.
  • We don’t know if it’s the B6 vitamins or the fact that his G-tube maybe alleviated his acid reflux, but Lindsey said lately he is the HAPPIEST BABY!!
  • He’s laughing, cooing and even starting to sort of mumble!!
Soooo….some kind of big news….please don’t get overly excited….but lets just say we are getting closer and closer to home :). No set dates yet, but it's close friends.

So here are your prayer and positive thought assignments:
  • Lindsey had her call today with social security to try and get Killian qualified for disability. She said it went well, but now it's just a waiting game. PLEASE pray/send positive thoughts that they get the help they need. 
  • Please keep praying/meditating on those seizures. A couple of weeks back they had to up his Keppra medication and currently he's at the highest dose, but is still showing very slight signs of seizures. We desperately want those to go away for good!
  • I'm asking for prayers for my little sister as she begins to make this transition. Pray for strength, patience and perseverance! 
  • Also, please say some special prayers for Grandma Val and Grandpa Barry as they are Lindsey's support system there in Nashville. They've already given up so much to support Lindsey and Killian and we just hope/pray that everyone finds a good balance once he's home. 
And now for the really good stuff!!!!! Dad and Kerry were in Nashville this past weekend so I have lots of new cuteness ammo! 



Kerr- Bear is making me stick my tongue out at her. 
Mommy always makes me smile!
Getting ready to cruise for chicks. I got to go outside in my stroller. 
Happy Father's Day PawPaw Garry! Three generations of  Lambert. 
I can't get enough cuddle time. 
Every keeps asking, so I'll set the record straight- I'm not wearing fake eyelashes!
Can't wait to be home with my mommy!

Have a great week! And follow his fan page for semi- daily updates  http://www.facebook.com/pages/CDH-Cherub-Killian/301945533181876. Love you guys!!!

xoxoxo
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.


Sunday, June 10, 2012

Sweet Potatoes!!

As I sit down to write this it feels like there is so much to tell you, and yet there hasn't really been anything going on (hence the lag time between posts).

Killian is flipping rocking it this week! Since his G-tube surgery, I hear that he really seems to be feeling a lot better. He had another echo done, which came back still mild to no pulmonary hypertension! And, as you know if you're following the fan page, he apparently loves him some mashed sweet potatoes!

Lindsey said that the first time they put them on his lips, he got really PO'ed (which I can't lie, made me giggle a little). But the second time around, he loved them and now gets tastes of sweet potatoes daily now!
Sweet potato lips! My eyes are crossed because that camera is in my face...again!
Another small victory I have to report, too- they removed his Broviac this week!! You can read a full medical description here, but in short, it was one of the last tubes Killian had. The Broviac line was left in for so long just in case they needed to administer a drug quickly to help him. Well, he's been doing so good lately that they felt he didn't need it anymore!

Our sweet boy has been with us for more than 5 months now. That's 5 months longer than most doctors thought he'd make it. As we continue to inch our way to the door, we'd like to ask for your support, well wishes and prayers in the following matters:
  • Please continue to hope and pray for the best as they wean Killian very very slowly off the last bit of drugs he's on. So far, so good, but it can take a turn for the worse at any point.
  • Let's all focus together on his mental and physical development. I cannot tell you how encouraged we've been by your inspirational stories of how your little loved ones have overcome the hurdles of underdevelopment. Keep sharing those!
  • As always please pray/send positive vibes for the doctors and nurses who care for Killian. We love the ambitious doctors (especially the ones who've help get us this far), but we don't want to push Killian to hard too fast. 
  • Lindsey has a phone interview in a week or so to appeal the decision that Killian doesn't qualify for disability. PLEASE pray and send lots of positivity that she and Killian get the help they need and deserve. 
  • I'm personally asking for lots of prayers for my little 20 year old sister who is under an incredible amount of pressure and stress. 
Being a young single mother in and of itself would be difficult enough. Pair that with the fact that she is caring for a sick baby...well, it would be enough to make even the strongest person crack. Our family is working hard to help in all the ways we can to prepare the house and to support her, but as I've said before this abnormal situation has become our norm. And as we approach this big change, it's easy to let the pressure get to all of us. 

Thank God we are believers and we know that He has a plan, a path and a purpose! We sure do serve an awesome God! And now for some more cute pictures :)

You know it was my 5 month birthday last Saturday! 
I'm such a happy baby without that silly feeding tube in my nose!
Working on my baby biceps pulling on my vibrating cow Aunt Layna bought me. 

Dad and Kerr-Bear will be there next week! I'm starting to get the itch to go back. It's been about 4 weeks for me. But I'm holding out for when I get the call that he's going home. Can you imagine that day!! I just can't wait!

Have a great week! And follow his fan page for daily updates  http://www.facebook.com/pages/CDH-Cherub-Killian/301945533181876. Love you guys!!!

xoxoxo
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.


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.