His oxygen sats haven't been very good. They sent some cultures off showing that he probably has an infection. They started him on antibiotics...need some prayers.
My panic level rose. "Calm down, Layna," I told myself. "They said there would be good days and bad days. It's a marathon. It's a marathon." But my soul was unsettled.
As I was crying over piles of baby boy clothes, my phone rang. "Honey, it's dad." I could hear him swallow the lump in his throat. "We're on our way to Nashville right now. He's not doing well."
For the next 36 hours, every time a text came in or my phone rang, my heart would sink thinking, "Is this the call?"
And around 7 p.m. Sunday night that call came. Our father, Killian's PaPa weeped, "We're losing him." I was on the next flight out. And I packed a black dress.
When I walked into Killian's room Monday morning the wind was knocked out of me. He was grey. He was swollen. We were losing him.
Full details of his stats at the time can be found here in a previous post, but in short, our hope was fading, but our faith was strong.
Over the next 24 hours, we began to discuss the details. We had a photographer ready to come in to take pictures. Lindsey had laid out his final outfit. A chaplain came and dedicated him to the Lord.
And as the doctors pushed for her to make her move, she simply said, "I'll know when it's time. God will tell me when it's time." So we waited on Killian. We waited on God.
If you've been following our story, you know what happened next! Killian had taken a turn that was beyond all medical explanation. As I said on Facebook, a nurse practitioner even cried with us and said the results of his test were "unexpected and incredible".
Wednesday through Friday, his numbers continued to climb. And then Nurse Kendra said, "It's time to make a move. He can't stay on the level of medication and support of machines like this forever. We need to start trying to back him off the oscillator and heart pressure meds." Anxiety was back. "Killian will show us if he's ready to fight more, or go on. I think it's important that we get him in a place where Lindsey can hold him."
And hold him she did!!! Sorry for the shoddy camera work, but a video is worth a million words...
The next two hours were nothing short of...I don't even have a word...
Thanks Nurse Kendra for pushing me!
Me, mommy and Beige (my bunny that mommy slept with for a month before I was born so that I would know her scent)!
Me, mommy and Crazy Aunt Layna (I hate it when she sings to me. It hurts my ears.)
Mommy is a hairdresser so she immediately gave me a mohawk. I'm so cool.
Grandpa Barry has always been jealous of my comfy bed. So the second I was out of it, he tried to take a nap. Silly Grandpa!
With my family who (except for a few trips back and forth to Kansas, Florida and work occasionally) have never left my side. Miss you Aunt Ashley and Uncle Todd! We'll take pictures together soon!
We have never seen Killian more peaceful. And we have never seen Lindsey smile so much. There are no words...
We give ALL praise and glory to our heavenly Father for showing us His might, His grace and His love. And to all of you, for your love, support and prayers.
MORE good news this morning:
- No chest tube!!! They removed it last night!
- Decreased blood pressure meds.
- Blood gas was NORMAL. His oxygen is in the 60s (up from 19!!!).
- No more fever. Still fighting a bit of an infection, but we know that won't last long.
- He is continuing to open both of his eyes at the sound of his mama's voice (and Aunt Layna's horrible singing).
LOVE 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.