So when Killian put up those strong numbers yesterday our emotions went from praise--to shock to--whatever this is. Cautious optimism is what we're calling it. It's quiet and inquisitive.
A doctor, a great doctor, told us today that she gives Killian a 5% chance of survival and nearly 100% chance of severe mental and physical disabilities. A nurse asked Lindsey, "Do you know what cerebral palsy looks like?" And because our family was blessed enough to have Joshua Stacy in our lives for the last 21 years (rest in peace sweet angel), she does know. And she doesn't care.
Josh was a bringer of joy. A smiler. A laugher. And though he never walked, never spoke, never fed himself, he was our son, our cousin, our nephew, a friend and a true blessing. He was never a burden. He never had a "low quality of life". And he certainly wasn't a mistake.
So while the doctors are gently telling Lindsey that this might be her future, she just smiles because to her having a child like Joshua is more than okay, it's a calling that is bestowed on a choice few. She is ready for that honor if that is Killian's fate.
- Killian's oxygen level has continued to slowly slowly climb.
- His lactic acid has crept up a bit, but is still down significantly.
- His heart rate has fallen to an acceptable range.
- They turned Killian successfully for the first time! Last Friday they did and his right lung (the strong one) collapsed. We said, "Hello other side of Killian's face! Nice to meet you!" :)
- The kindness of friends, family and strangers has sustained us in this.
- Aunt Layna's friend Kyle from high school in Missouri catered in Famous Dave's BBQ and fed not only the Lambert/Welch family, but two other families whose babies are fighting here in the NICU!
- Another one of Layna's high school friends, Kassandra, earlier this week stopped by with cupcakes, balloons, embroidered blankets and towels and a bag of toiletries for Lindsey to celebrate Killian's 2 week birthday!
- Layna's work, BGT Partners in Miami, sent beautiful flowers and continues to support her in her decision to be here (and your voice on the ground!).
- A Facebook friend, Sarah in Ontario, sent a basket of snacks! We can't wait to share the candy with our nurse tonight, Keith!
- We're estimating that hundreds, if not thousands of people around the world (we're talking Norway and England!) are spreading Killian's story and lifting him and our family up.
Love to you all,
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. 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.