Not The Most Uplifting Post...

We have been so incredibly blessed this week. I almost can't catch my breath when I stop and think about how far we've come. Here's what's been going on with sweet baby Killian...

• Mr. Man got his feeding tube put down through is nose and seems to be pretty happy about that because the family is getting to see him smile bunches :)
• One of the nurses said he's been getting good "growing sleep"- meaning that when he rests, it's very deep and peaceful. That kind of sleep is really good for his development.
• As you all know (if you're following his fan page), his nitric is OFF!!! It's completely turned off!
• We don't know when they'll do another echo, but we just know that his pulmonary hypertension is still  gone! 
• We are one step closer to the door with these turn of events! 
• Also, they are starting to turn down his pressures. He's currently at 4.5... when he's at 2, that's when they can start trying to do the feeding assessment and determine whether or not he'll be able to feed from a bottle. Please pray that is the case! 
• He's down to 28% oxygen! 

While all of these things are amazing...and we are grateful to the Lord, I personally am having a hard time celebrating. 

I had a mini breakdown yesterday when I read that another baby, Phoenix in England, who we've been following and praying for, lost his life because of this terrible, disgusting, heart wrenching condition called congenital diaphragmatic hernia. 

Here's a message Phoenix's wonderful dad left on Killian's page on April 15:

Good morning to killian, he truly has been inspirational!! We started our CDH journey only a few days ago. You try to prepare for how tough it is going to be but nothing can prepare you for the daily battles. Currently our boy is under going ECMO treatment to give him a rest. I have followed your journey closely and would like to say killian and his family has unbelievable strength. Keep up the good work, Rob. (Father to CDH Cherub: Phoenix Keoni Alec Bentley).

Watching the play by play on Phoenix's page this week brought me back to that dark place we were in January. I wept yesterday, crying out to the Lord, "Make this stop!!" And I would be lying if I also didn't admit that I felt overwhelming guilt. Why has our sweet boy been spared? And why do Robert and Vivian have to bury theirs? Why have so many others had to bury theirs too? Here's Rob's message today:

I would like to thank everybody for their messages of support at such a difficult time. Viv and I take strength and courage knowing that we have so many caring friends and relatives.x x

Baby Phoenix Keoni Alec it is an honour to be your daddy you have taught me so much about life in the short time that we got to spend with you. I will be forever grateful for everything that comes my way. You have been a true inspiration little man!! It pains me that I will never get the chance to do things a father and son should do. I hope you will always be by my side. You will never be far from my thoughts. I will always love you.x x

I know that it's not my place to try and figure it all out. But my God, the weight of it all is crushing. I think that I've been keeping my head down for so long, focused on Killian's recovery and in the light of the wonderful events that happened to us this week, I stopped for the first time to look up. 

So prayer warriors and positive thought givers, your assignment for this evening and this week just got a little longer. Please pray/send positive vibes for the following:

• Pray for peace for Viv and Rob. That God would wrap them in his loving arms and that they make find a small bit of solace in knowing that they will once again be with their dear son, Phoenix Keoni Alec Bentley. 
• Pray for Liam Lyon whose family has been called in to be by his side today. Pray that God would perform a miracle right now in his body! 
• Pray for Jude! Jude and his lovely family have been in this fight longer than we have. Rose and Brian, we draw strength from you daily. Jude is Killian's big brother in all of this! Jude had to be reintubated this morning. 
• Fight Ike Fight! A former coworker/ coheir and conqueror in Christ, Tyler, and his wife got the heart breaking news a short time ago that their son Isaac has cancer. PLEASE pray that God continues to  heal Isaac. Tyler and Amy have displayed such grace and wit even in the bleakest of times. 
• Sweet baby Patrick was just put on ECMO this week. His mama Robyn has been a rock through all of this, even as they parent their other children and set up camp in the Ronald McDonald house as Patrick is being treated far from home.
• Isaiah Wilson has been fighting like a champ for what feels like forever. He's struggling hard right now with that ugly monster pulmonary hypertension. Pray that God will bring the same healing to him that He has for Killian. 
• Lastly, Ryan, the worship leader at my church, recently welcomed his baby boy Jet into the world. Ryan and his wife Julie haven't been able to bring Jet home as he is having difficulty breathing. He doesn't have CDH, but the doctors aren't quite sure what is wrong him him. At this rate, he will be in the NICU for quite some time. You can sign up on this calendar to pray for Jet, Ryan, Julie and their whole family. 

I know I've missed a bunch of you. Sorry to be such a bummer tonight. But I think it is important that we all stop...and look up ever now and again. To any of you reading who have ever lost a child, a brother, a sister, a grandchild, a niece, a nephew... too early in life, my heart is broken into a thousand pieces for you. You honor their memories everyday with the way you love and support Killian and all the other babies out there who are fighting for their lives. 

I've told Lindsey before it's okay to be sad every now and again. The important thing is to not stay there long. So, I will end on a positive note. Look how far we've come....

The first time Killian opened his eyes...he was still on ECMO

To this....

      

Look at our big guy! He's just kickin' it in a room with no nitric machine!! 

Thanks for bearing me with me today. Tomorrow is a new day! Thank the Lord for that!

xoxox
Aunt Layna 

P.S. Like his fan page to get the daily updates: http://www.facebook.com/pages/CDH-Cherub-Killian/301945533181876
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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.