Thursday, February 16, 2012

Off the Vent for a Bit!

 What an exciting day! I got a text today around 1 p.m. EST from Lindsey that read:
"Omg omg omg omg! they are going to take Killian off the vent cause the leak has gotten so bad they wonder if he even needs it...an on a nasal cannula for the nitric!! Of course they will reintubate if he needs it."
I immediately stepped outside to call her. The joy in her voice was palpable! I of course proceeded to cry (I'm a crier). "We'll get to see his mouth for the first time," she said. "And I'll get to hear him cry!" (Killian was intubated before he took his first breath) Then I cried some more.


And here he is!
Handsome boy!



Killian rocked himself some "no vent" action for nearly THREE HOURS! Way to go buddy! But then he started to split on his pre and post numbers (what he was taking in wasn't matching what he was putting out). 

They have successfully reintubated him and he is back on the vent now. We definitely knew this might happen and a lot of other CDH parents shared with us their stories of it taking multiple times for their little cherubs to come off the vent. I like what our friend Gene said on Facebook, "First one push up, then two!"

We are just super thankful that he is trying. He is fighting! And we got to see even more of his amazing little face! Take that 5%! Lindsey didn't get to hear him cry, but there is plenty of time for that because this kid isn't going anywhere! 

Here are your prayer/positive thought assignments for the night :):
  • First, stay in a state of thankfulness with us over what happened today!
  • His infection number came back a little higher again today. Don't know what that is all about, but they are keeping him on the antibiotics for now. 
  • Always remember his little heart and pray for that pulmonary hypertension to go away! 
  • Remember to also pray for those blood clots in his brain to disseminate. 
  • Keep Killian's girlfriend Avarey Grace in your prayers. This sweet baby girl who we've fallen in love with had to go on ECMO yesterday. It's a scary thing, but we know she has to get better because she's betrothed to Killian :)
Seven days until I go to Nashville!!!! Hugs!
Aunt Layna 
Killian's Social Media Coordinator 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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. 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.

3 comments:

  1. Oh my gosh is he ever cute!!!

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  2. Many, many PRAISES for Killian! Such a huge step!

    If I learned one thing our daughter & son in-law's journey with their Angel CHERUB, Liam it is a roller coaster of emotions & trys.

    Praises for all the doctors, nurses & specialists who devote their daily lives to our CHERUBS. These folks don't forget about them when their shift is over, they remain fully invested in these little fighters. Our Jade still emails with Liam's "main" nurse on a weekly basis.

    God Bless Killian & his wonderful family always.

    You Go Little Warrior Man!

    Continued prayers for strong heart and for the infection & blood clots to go away!

    Continued prayers & positive vibes for Avarey Grace & her family. Our CHERUB was on ECMO also and yes it is scary but a Blessing.

    What a handsome little guy!

    This Nonna in Vermont vowed to become a CHERUB cheerleader for all families.

    Blessings Always,

    Maria

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  3. Maria, as always, you continue to bless us with your kind words and encouragement. Liam was/is lucky to have you as a Nonna! :)

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