As his mama says, "He's waving to all of his fans!"
I don't really have anything witty or insightful to write today because the fact of the matter is, life is getting in the way. Isn't it crazy that there are these little babies who are in the world, fighting for every moment because of this terrible condition called CDH and yet emails still come? Laundry still has to get done? Bills have to get paid? If I stop moving long enough to think about it, it actually makes me mad!
But there is also no time for anger, only joy! We're joyful over another day spent with our little angle Killian who all things considering, is doing well. :)
Here are the highlights of last couple of days:
- Killian turned five weeks old yesterday!
- They removed the "art line" from his hand because they don't have to draw as many blood gases anymore. Lindsey said that it was the cutest thing because it was the first time both of his hands have been free and he immediately moved them both up to his face. Awww...
"Turn the lights out! I'm trying to sleep here!"
- He continues to tolerate feedings well. In fact, they've doubled the amount he was getting!
- The heart ultrasound showed no improvement in his pulmonary hypertension . Just keeping it real, pulmonary hypertension is one of the main causes of death in CDH babies. We serve a great big God and we know this problem is not above Him. We really need his heart to stop having to work so hard.
- Killian had another seizure today. While we're happy this is the first one in a week, we'd like there to be none ever again! They docs are working on his Kepra (anti-seizure med) dosage.
- He has developed Petechiae which is basically small red bumps all over his skin that could be caused by a number of things. Nothing too serious, but still would like that to go away.
- He seems like he's really irritable lately. Cause unknown. I'd like to think it's because he misses his Aunt Layna :)
- Lindsey said that she's going to request another scan of his brain to test the blood clots soon, so please pray that those are gone!
That's all for now!
Hugs from 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.