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 saw Monroe 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. 

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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 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.