Wednesday, January 25, 2012

Inspiration Station

First things first...Killian update (just interviewed Lindsey):
  • They took his catheter out today. He has to be more comfortable and this gives Lindsey more practice changing diapers :).
  • He's back up to 92% on the ventilator. They aren't too concerned with this because they've been messing with his medication and body position a lot today.
  • Hey opened his eyes again today!!! (like a hug from Jesus when that happens!)
  • He actually did have a small seizure today around 2 p.m., but at least he went 12 hours without one. They upped his Keppra (anti-seizure med) again and Lindsey said, "I have a feeling this is his 'sweet spot'." Lord knows her intuition has been right on the money thus far. 
  • The swelling in his face is down. Yay!
  • They continued to give him platelets last night, but haven't had to give him any today. 
  • Blood gases are coming back acceptable. 
  • He now weights 9lbs 6 oz!!! We're gonna have to get him baby spanx :) 
They will be doing another head ultrasound soon. PLEASE pray/send good vibes for those blood clots to be  completely gone! 

:::Insert perfect transition:::

Roller coaster. Good days and bad days. Peaks and valleys. These are phrases we hear a lot from nurses, doctors and other parents/loved ones of Congenital Diaphragmatic Hernia babies (or Cherubs as we call them). And man, so far this week we've been riding Magic Mountain. 

Killian started experiencing seizures Sunday night, after an awesome weekend. The past three days have been very scary and while we have SOOO much to be thankful for considering what happened last week, we can't help but get a bit down every once in awhile. Like I told Lindsey (Killian's mama) today, it's normal to have these emotions but it's important not to stay there for long. 

So, here are some of the things that have lifted us up this week. Hope you find some joy and inspiration in these stories, posts from Facebook friends, scriptures and texts. Lastly, if these two videos don't make you realize we all have something to offer this world or "ugly" cry like I did (can't catch your breath, atrocious facial expression, snot running out of your nose, etc.), then you might be a robot. 
  • Posts on the blog:
    • Our CDH daughter Sofia was given a 10% chance to live. The doctors had no hope, but I had faith and listened to what my heart was telling me. Everyone was praying for her. She was released after a 7 month hospital stay. She is 4 years old now and doing well. First few years were rough, but now its much better.
    • I have no idea what will happen in your case, but as far as miracles go I witnessed a spectaclar one across the room from my daughter in the NICU back in 2008. At first the doctors were telling the mother her child was brain dead. They said there was no brain function at all. The child would respond to her name and open her eyes. She laughed at funny comments. We didn't think the docs were correct. Sure enough the next week they came back saying that there was 30% brain function happening as her brain stem was still working. However within a week they told the mother that it wasn't enough to sustain the child and keeping her on life support was a waste basically. They took out the breathing tube and waited on her to pass away. To their surprise the child continued to breath on her own and remain stable. Within the next several weeks they put that baby in the intermediate care area. After about a month the baby and her mother were released. I've been keeping up with the mom on Facebook and that baby is now a healthy 4 yr old girl. Always trust in the power of prayer. God decides how long we have on this earth, not the doctors. You are all in my prayers and I wish you all the best.
  • My 5-month old Samuel (LCDH) is giving the thumbs up for Killian. He is very proud of baby Killian. He loves to listen how Killian is doing!
  • My daughter Maddie was born with CDH and is doing beautifully if that gives you any hope. She is 7 yrs old.I can remember being were you are my heart breaks for you. Keep the faith in your heart.
  • Jeremiah 17:14
    Heal me, O Lord, and I shall be healed; save me, and I shall be saved: for thou {art} my praise.
  • God healed a little girl 56 1/2 years ago who only weighed 2lbs 4 oz who wasn't supposed to live and be blind and deaf. Now that lady has two beautiful children of her own and loves God with all of her heart. My God did that for me so tell Killian his Aunt Roxie (not technically Killian's aunt -she's mine-) is praying that God will heal him and make him he can serve Him!! 
  • 2 Chronicles:9
    If calamity comes upon us, whether the sword of judgment, or plague or famine, we will stand in your presence before this temple that bears your Name and will cry out to you in our distress, and you will hear us and save us.
    2 Chronicles:17
    You will not have to fight this battle. Take up your positions; stand firm and see the deliverance the LORD will give you, Judah and Jerusalem. Do not be afraid; do not be discouraged. Go out to face them tomorrow, and the LORD will be with you.
  • This incredible video our dear friend Terry made to inspire us when we were at our absolute lowest. I've watched it a thousand times and still cry remembering our 23 day journey. 
  • And lastly, please take 8 minutes to watch this...this little autistic boy (10 years old) was a throw away. His parents were addicted to drugs and let him go into the Florida foster care system. His uncle came and got him and has raise him ever since. Here he is singing "Open the Eyes of My Heart." 
    • I don't care if you're a Christian, a Muslim, Atheist or other...this should inspire you!!

What inspirational stories do you have to share? 
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.

Any donation you're able to make will help this sweet baby boy - from getting his family to & from the hospital to helping with Killian's care. From all of us who love Killian and his family, thank you!

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. The paypal donation account was set up by a friend, Liz Wolfe, whose name and email appears on the PayPal page. Liz manages all donations with the support and oversight of Killian's aunt, Layna Lambert Dugan.
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. I just wanted to tell you that I've been praying for and thinking about little Killian every day. I lost my son to CDH after 14 days. I hope Killian can beat this horrible birth defect. Reading your blog about using Keppra to help him makes me feel so proud. I work for UCB which is the company that manufactures Keppra and my laboratory tests the product before it can be sold. Knowing that Keppra is helping a baby with CDH makes me so happy and gives me inspiration to come to work. Give Killian and his family my love and know I'm thinking about him today as I work to help more babies like him!

    Tina Ingham

  2. Thank you Tina!!! Keep up the good work!

  3. This is Abel's Story:
    On May 21st, 2010, our lives were forever changed. During a routine ultrasound we were told that our son had a life threatening birth defect, Congenital Diaphragmatic Hernia. Due to the severity of his case, Abel was given a 10% chance of survival at birth.
    Abel was born on October 22, 2010. He was placed on a mechanical ventilator and was transferred to Children’s Hospital Colorado.12 hours after birth, we were notified that Abel would need to be placed on ECMO in order to keep him alive. My husband signed the consent and we waited while he underwent his first major surgery.On Day 3, the doctors discovered bleeding around Abel’s heart. They had to perform a major surgery and open his chest to stitch his pulmonary artery to stop the bleeding. The doctors were now forced to make a very tough decision. The decision was made that they would repair his hernia while on ECMO then immediately following that surgery, they would proceed to remove him off of ECMO in hopes of stopping the Heprin and allowing his blood to clot. We waited in the NICU waiting room for several when they performed the surgery. After surgery, Dr. Karrer came out to the waiting room and advised us that in 22 years of doing diaphragmatic hernia repairs, Abel had-by far-the worst case he had ever seen. Dr. Karrer proceeded to tell us that Abel had lost a lot of blood and that he probably wouldn’t make it through the night but he had done the best he could do for him. Within a few minutes the Nurse Practitioner came out and advised us that Abel was bleeding but stable.She said “It is going to be very touch and go, minute to minute for the rest of the night”. It broke her heart, to break ours. We geared up for the long night ahead. About 30 minutes later, one of the Doctors came out and said “Abel has taken a turn for the worse, he is bleeding from every where. He isn’t going to make it. Do you want to see him?” My husband and I followed her back to his bed spot. His oxygen was at 40% and his heart rate was over 200. We knew it was bad. I walked up to Abel and my first thought was that he needed to hear my voice, he needed to know that we were there. So I began talking to him. I said “Abel, it’s Mommy, I’m right here with you. Daddy’s here too.” I started rubbing his head and his feet. I told him “Keep fighting Son, we’re all here fighting for you, just a little bit longer. You brothers haven’t gotten to meet you yet. We want to see you learn how to ride a bike, swing on the swings, play at the park. . .Celebrate your first Birthday. Keep fighting.” We told him how much we loved him. Abel started to bleed out of his nose, the nurse cleaned him up. As I continued to rub his jet black hair, he started to bleed out of his nose and mouth. This time, I started to clean him up and I realized that this was the moment we had tried to prepare for. In this moment, I knew I needed to be selfless. I leaned down, kissed Abel on the head and I said “Son, if you’re tired, just tell me and I’ll understand.” I needed Abel to know that we would understand if he was tired and couldn’t fight anymore. We needed him to know that it was ok, he had suffered enough. I was asked to step away from his bedside so that they could take an x-ray. Within a few minutes, Dr. Gien looked at us and said that he was stable. We had just witnessed a miracle. Abel had pulled through and he was stable, the doctors, nurses, surgeons and all the NICU staff had never given up on Abel. They continued to work on him, when most would have given up. All because Dr. Gien believed he could still save his life, and he did.
    After over 17 weeks in the NICU at Children's Hospital Colorado, enduring over 6 major surgeries in the first 5 days of life and conquering many many medical battles, Abel came home to be with brothers and us on Janurary 24th, 2011.
    Although he still struggles with some medical complications due to CDH, he is a normal, happy, outgoing, walking and on-the-go 1 year old.

  4. Killian and all his family and friends continue to be in our daily prayers, for we know the struggles of CDH.

    Abel's entire journey with CDH can be found at:

    The Burton Family

  5. Absolutely amazing! I'm in tears! Can't thank you enough for sharing your story!!!!!!!! Sounds very similar to what we went through last week. Love this! Give Able a hug from us!

  6. Killian is such an amazing warrior. I am keeping him in my prayers. Truly an example of what our God is capable of!

    -Amy Miles