Here's the latest:
- After his heart rate shot up on Thursday night, they started him on antibiotics. And his infection test came back negative yesterday!
- He's been doing so well lately, that they are talking about putting his vent on the setting where it only kicks in if he needs it (CPAP?) next week sometime.
- He's growing bigger everyday, now weighing in at 11lbs 9 oz!
- Physical and Occupational Therapy came in and gave Killian some gifts- a black and white picture board and a mirror :). Lindsey says that he seems to really like it, but sometimes gets a little overstimulated. I'm just happy that he's responding to them both! I mean, if I was that cute and saw myself in a mirror, I'd get pretty excited too!
- The docs have been weaning his versed (anti-anxiety) med more and more and may actually move him to an oral equivalent soon. This is important because versed is the last drip med he's on!
- Lindsey said that he's awake a lot more now that he's off morphine which is great! And she said that she thinks he's starting to figure out how to stay awake in the day and sleep the most at night. This is big news for us because poor guy has been so heavily medicated since the moment he was born that he hasn't known what was normal.
Tuesday is the big day! They'll be doing an ECHO to check the pulmonary hypertension. We, as always invite you to pray with us or send positive thoughts that it is completely gone. Heck, we'll even take improved.
I just have a hard time believing that it hasn't! We've had several nurses tell us that there is no way a baby with severe pulmonary hypertension would be doing as well as Killian is, especially at only 30-40% support from the vent.
Please also pray/send positive thoughts for Lindsey. She has a job interview on Monday at a local salon. Trust me, we wish that she could spend everyday, all day with Killian as she does now, forever but as I've written about before, life just keeps going. Bills still come in. We are just praying that if it is where God wants her to be, that he would open up the right doors. And if it isn't, that he would clearly let her know.
For those of you who have children, imagine the feeling of dropping them off with a babysitter or at daycare to go to work for the first time. I'm not a mother yet, but I would imagine that it is very difficult at first. There are probably fears about whether he/she is going to like it, if he/she will be okay and I would imagine there is some guilt mixed in there amongst all that anxiety. Well now imagine that you have a very sick baby and every moment with him already feels so fleeting....
So we want to know that where Lindsey ends up is a place that is perfect for her. One that will support her if she needs to be at the hospital with Killian. A place that needs her the right amount of hours, where it is mutually beneficial.
I hope to check back in with you all in a few days with lots of good news...giving all glory to God of course!! But first, I can't sign off without giving you some eye candy :)
|Man, these pictures are cool!|
|Mommy and me looking at my handsome self in the mirror.|
|Happy St. Patrick's Day!|
|I'm a sweet little Cherub and can't wait to share the story about how I beat CDH!|
XOXOXO From Aunt Layna
p.s. If you haven't already, please like Killian's Facebook Fan Page. We post daily updates there! http://www.facebook.com/pages/CDH-Cherub-Killian/301945533181876
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.