Sunday, April 1, 2012

Dear Heavenly Father...

What a crazy week it has been, full of ups and downs, tears and smiles. God certainly is refining us through the fire as we lean more and more into him and his will for Killian's life. In case you're not following his Facebook page, here's a play by play:

  • Killian was extubated on Sunday and did great for about 2 1/2 days. UP!
  • After throwing a few serious fits (holding his breath, clinching his fists, and turning a deep purple), early Tuesday morning his right lung collapsed and he had to be reintuabated. DOWN :(
  • They also had to put a chest tube back in which I can only imagine, is very uncomfortable and irritating. DOWN :(
  • The docs did a CT scan of his lungs the following day and told us that depending on what they found, they may have to do surgery. DOWN :(
  • Results came back and the consensus surgery! UP! 
  • Killian himself wasn't very impressed with this news as he continued to act pretty fussy. DOWN :(
  • Even after the crazy week he had, his blood gases came back great and they continued to turn down the settings on his vent again. UP!
  • Killian started acting like he felt better and continued to show everyone how much he loves his new crib and mobile by kicking his feet and trying to reach for it! This is a very very good sign and we're hoping proves that he has no developmental issues like the doctors were concerned about him having. UP!! (and cute!)
  • His chest tube was removed and he is one happy baby again! UP! 
  • They started him on Clonadine to aid in the weaning of his methadone. And so far, it's been all good in the hood there! UP! 
Killian's newest doctor (they rotate about every 3 weeks) is talking about extubating him again on Monday. While talking to our dad this week (Papa Garry), I said, "I'm excited, but I'm so nervous. This will be the fourth time that he's been extubated." And dad quickly said, "Honey, he cannot stay where he is. We have to push him."

And so push him they will! I did some intense praying today at church (thank you prayer team at Rio Vista Community!) and I thought I share with you some of things I've been saying to God. Feel free to repeat verbatim or put your spin on it. And if praying is not your thing, please focus healing energy and strength for his heart.

To the creator of the heavens and earth, to the weaver of dreams, to maker of all life, please hear our humble prayer....

Before he was born, Lord you called Killian; from his birth you made mention of his name (Isaiah 49:1).  He was fearfully and wonderfully made by you, oh God. Your works are wonderful in him (Psalm 139;13-14). 

Hosanna, we humbly come before you and ask that you continue to do good works in our precious baby boy, Killian. With Easter upon us we are reminded of how you brought your own son, our savior Jesus Christ, back from the dead, how you restored life to every part of his body. 

We cry out Lord, that you would bring life into Killian's body. Breathe life into his lungs (Job 33:4). Increase your strength in his heart (Isaiah 40:29). Whisper restoration to any organ, any cell that has been damaged (Jeremiah 30:17). 

Jesus lay your healing hand on Killian's chest tomorrow as they doctors take him off the vent again. Ease any discomfort that he may feel. Holy Spirit calm him should he begin to throw another fit. Lift him up Lord so that he can yet again be a testament to your wonder and might. 

We ask that you be with our family and all of our friends who are praying for Killian. Bless each doctor and nurse that has contact with him. Thank you for the blessing that he has become to so many.

And thank you Lord, for your word and that you are faithful to perform it. Indeed Father, we stand in agreement and adoration; Great is thy faithfulness (Lamentations 3:23).

In Jesus name we pray, Amen. 

We will keep you all posted as the information comes in. Can't thank you enough for your love, support and prayers! 

T-Minus 4 days and counting until I'm in Nashville with the family!! 

Hugs from Florida,
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.

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.

1 comment:

  1. What a sweet photo! I hope Killian has a week filled with many ups!