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!
Aunt Layna

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


  1. Wonderful news! I got tears in my eyes when you said Lindsey brought the outfit home!
    When I brought my Dakota home, it was definitely scary. They scare the living daylights out of you by stressing over and over again about germs. I have never been a germaphobe, but I came home one. I remember walking into my house and breathing a sigh of relief. I hadn't been there for 2 months, and the last time I left, Dakota was in the process of being put on ECMO and we were frantically packing to get on the road and get to her. It was the day after Christmas when we left and we came home to Christmas decorations and upopened presents, like time had stopped for a while. It was bizarre. I can tell from this blog that Lindsey is surrounded by amazing family, and that makes all the difference. My husband and I had to go back to work 2 weeks after I got home from the hospital with Dakota. It was heart breaking. But both sets of grandparents are in town. So they came over to watch a baby on oxygen who was extremely tough to feed and who you could not get sick. I handed them the brest milk bottle, trained them as best as I could to try to get the milk in, and then left with tears streaming down my face. But Dakota was fine. She actually did not get a sickness until she was 18 months old, and then kicked it to the curb with no drama. She was so tough to feed (we did not have a feeding tube) and each feeding was an absolute battle for 6 months, but we made it through! You worry, but you get through it. Then time passes quickly and all of a sudden, your delayed baby starts to reach their milestones one by one, and each is a miraculous celebration. Tubes start to go away. Medications start to go away, slowly but surely, until one day you wake up and your baby is "normal" or at least your new "normal." Now my Dakota is 3 1/2 and life is normal. I still worry more than the average mom, but I also appreciate everything more than the average mom. She is my precious gift. We don't worry about germs any longer since she has proven that she can handle colds no problem and she has caught up developmentally. You will get there. I remember sitting in the hospital with tears running down my face, trying to feed my baby, just wanting to fast forward in time. But those days, while full of stress, are precious too. Many prayers for a homecoming soon, and a healthy Killian at home!!!!! You guys have done an amazing job!
    Mom to Dakota 12-25-2008
    RCDH survivor

  2. Wow. Just wow. Jennifer I have goosebumps all over my body. You have no idea how much your comments have blessed me this morning. I literally feel like a breath of fresh air has just been pushed into my lungs. Thank you so much!!! Dakota and you are an inspiration to us. God bless you! - Layna