Man I can't wait to hear this kid's voice!! Yesterday for the first time I got to witness his "fits" and see what Lindsey means when she says he's really agitated. Let me tell you, it's not easy to watch. His face gets all mushed up as he frowns his mouth like a trout. He balls his fists so tightly he could bust rocks. He turns a perfect plum purple and shakes with all his might. And if he wasn't on mute because of the tubes in his mouth, he'd be wailing like a banshee! I want to hear him cry! It took all of my strength not to run over, swoop him up and yank those tubes out of his mouth so he could let one loose. But alas, we are just left with silent cries.
I also had the honor of seeing, hearing and smelling the repercussions the withdrawals are having on his digestive system. Holy crap (no pun intended) was that surprising :). He got sick a few times, from both ends. Lucky for me, I get play the "Aunt card" and stand idly by as Grandma Val and Lindsey changed a couple of those diapers. I'm happy to blog about it though! :)
But this is not a sad post!! He's continues to make incredible progress everyday! See for yourself as he tries to turn his head in this video....
MAJOR (awesome) stuff is happening right now:
- Grandma Val and I got to the hospital this morning to see that according to the vent, he was breathing 100% of the time on his own!! They've currently got the vent set to only kick in if he needs it. It's been two and half hours and he is doing great!!!
- He's down to 5% nitric! From here the doctors will take it down 1% at a time.
- They continue to wean his morphine and versed which are both drip medications. We may be able to get him on oral alternatives soon.
- All of these things are huge steps because there is no possibility of him going home if he still has a breathing tube (vent), a feeding tube in his mouth, on any drip medications or on nitric oxide. So the farther we get away from these aids, the closer he gets to sleeping in his jungle themed crib next to his mama's bed!
- Also, when he finally gets all these tubes out, he can get his first REAL bath! He is a little stinky, but adorable :)
- When he's awake, he's so alert! He looks for his mama and grandma when he hears their voices.
- He's up a little bit more on his feedings!
Funny things about Killian I'm learning:
- He really likes it when you stroke the top of his peach fuzzy head.
- When he gets really agitated, gentle taps on his bottom seem to calm him down.
- He favors sleeping on his right side.
- And he really does hate the sound of Aunt Layna's singing! Case in point: Yesterday it was just Lindsey and I here with him. We were reading scripture and I started in with "How Great is Our God". By about the second verse, he started silently crying!!! We both were laughing so hard I thought we were going to have to step out of the NICU!
Me and Aunt Layna!!
More pictures and videos soon! But I'm gonna get back to Killian right now :). Love you guys!
Aunt Layna
Killian's Social Media Coordinator
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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.
Hello Layna, Killian, Lindsey, Grandma Val and all the other cheerleaders over there in Tennessee. It's Kristen Simmons again in sunny California and I just wanted to drop you a line again to say thank you. Thank you so much for keeping us updated on Killian. I think about him so often and pray for him every night. Sometimes I forget to pray for my own little guy (I have a one year old) just because I'm so intent on reading about that glorious day that Killian comes home.
ReplyDeleteI wanted you to know that aside from my grandmother praying (she was the one who heard God speak to her a few days ago), I have the women at my work (I work at the all women's gym Curves) praying for him too. We have a prayer chain going and it's so amazing as these women come in we check on each other's prayer requests. "How's Kylie?" "The Lord is good." "What about sweet baby, Killian?" "Look at this video- he's so beautiful!" It's such a blessing to share in this journey with you. Thank you.
As always our prayers are with you and please give Killian an extra rub on that peach fuzzy head of his from his surrogate Aunt Kristen out here in CA. :) (I hope that wasn't creepy or something...?)
Much Love and Prayers for you all!
I love to hear about all his improvements :) Keep it up Killian!
ReplyDeleteKristen! Thank you sooo much for your continued prayers and support. Looks like your grandma (whose health I pray is improved?) was on the money! Killian is definitely not out of the woods but is making great strides. Tell all those nice ladies at Curves how much we appreciate them too!
ReplyDeleteLisa- we love talking about all the improvements :) Thanks for reading!