Tuesday, March 27, 2012

Killian’s Birthday Present for Aunt Layna

It was my (Aunt Layna's) birthday this weekend.  And even though I was showered with lots of love, great food and awesome presents, it was going to be hard for anyone to top what Killian did and got for me :)

Killian Kayne Lambert is off the vent again!!! He’s such little rock star! 1 Chronicles 16:9 - Sing to him, sing praise to him; tell of all his wonderful acts. (!)

After getting the great news last week about his PH improving a bit, the docs decided to keep pushing him forward. Since then here’s a breakdown of what’s happened:

  • He’s completely off the last drip medication he was on
  • He’s handling the steroids well. We hope this helps make him even stronger.
  • Since going to a nasal cannula, his heart rate has been exactly where it needs to be for the most part and he’s still satting in the high 90s-100! 
  • As of right now, he's been off the vent for nearly 2 1/2 days! 

AND, momma Lindsey put clothes on him for the first time and sent me this AWESOME picture for my birthday! 

When I opened the package I cried immediately. Look how stinking cute he is!! And inside the card were his little footprints and a hand print. Incredible!

My birthday wish was just that Killian would have 3 times as many as I have had thus far (I just turned 26…for the third time). Let's all hope, pray and believe that is the case!

Prayer warriors and positive thought givers we aren't out of the woods off the vent yet. Here are your assignments for the next couple of days:

  • Killian had another serious fit today like he did last night. When he does this it's very scary because he essentially stops breathing, clinches his fist and his heart rate gets very very high (today it got to 235). We don't know if it's withdrawals, over stimulation or he's trying to tell us something. Thank God, right now, he's back to where he needs to be, but we're always fearful that we're one fit away from something bad. 
  • Please pray/mediate on him quickly adjusting and not throwing any fits. The last time, when he extubated himself, it was a strong fit that essentially caused the pneumothorax and forced them to reintubate.
  • The move from the breathing tube to the nasal cannula is not a comfortable transition. Even though I’m sure Killian is glad to have that tube out of his throat, it’s all he’s really known. And the docs have told us that the experience of having a cannula is like sticking your head out of a moving vehicle with your mouth open. Please pray for his comfort.
  • Continue to focus on that pulmonary hypertension to go away! They are slowly trying to wean the nitric again and we really need his lungs to oxygenate his blood properly so as not to put unnecessary pressure on his heart.
  • As always, please lift up the doctors and nurses that they would make the correct decisions for Killian's health. 
  • Don't forget to pray for all the other CDH babies and families that are fighting and grieving tonight. For those of us who now know what Congenital Diaphragmatic Hernia, life will never be the same. 
And now, as your reward for reading the blog....some more pictures for your viewing pleasure….

Such a cool dude!
Look guys! No breathing tube!

I’m leaving a week from Thursday to meet up with Grandpa Garry (Lindsey and my dad) and Ker-Bear (our second mom) for Easter weekend in Nashville with Lindsey and Killian!!!! I couldn’t be more excited! Think of all the pictures and stories I'll have then :).

Thank you as always for caring about and loving Killian with us! If you haven't yet, like his fan page to get daily updates! 

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.

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