Sunday, August 5, 2012

What's Life Like At Home?

Hello friends! Many apologies for the time lapse between full updates!

What's life like at home for Lindsey and Killian? Well, I would say a month in we can describe it as joyful, tiring, exhilarating, stressful and precious all at the same time.

Lindsey has adjusted splendidly to her new positions (in addition to awesome mommy) as nutritionist, nurse and medical equipment expert. As all you CDH parents out there know, it's an overstatement to say taking care of a baby like Killian is a full time job. Between the normal baby things like feedings and naps, Killian also has to receive a long list of medications at specific times of the day.

We had a bit of a scare only 8 days into Killian being at home. He was desatting and just couldn't seem to get caught back up. Lindsey took him to the hospital where they admitted him for 3 days to observe him and get his sats back up. After relentless testing, the doctors could find no real definitive reason the change. We knew that this could happen, but I know I personally wasn't expecting it to be so soon. 

Our family's hypothesis is that Killian was just getting too hot in Lindsey's house. He "runs hot" anyway and was used to a 65 degree hospital room. With the heat in Tennessee this summer, paired with a 20 year old AC unit in Lindsey's house, we just couldn't keep the house cool enough. When Killian is uncomfortable, he cries. When he cries, he desats. And when he desats, sometimes he just can't get caught back up. So for the time being, Lindsey and Killian have moved in with Grandma Val and Grandpa Barry....which I think all are enjoying :). Hopefully when things cool down she can get back into her house.
Napping with Grandma Val!
She does have the help of a nurse 4 days a week still too, which is such a blessing on doctor visit days and when Lindsey has to go to work.  
As far as Killian's progress at home, we are praising God every day for the little things. He really enjoys getting his "tastes" of pureed fruit and we're hopeful that soon he'll be able to swallow a little more. And he weights 20lbs!!! The docs say he's the size of a 1 year old :), even though she's feeding him the recommended amount. 
We continue to see bright glimmers of hope in his development too. Watch this video from a recent visit from PaPa Garry and Kerr-Bear...Kerry was playing "I'm gonna get you" and Killian leans forward almost anticipating her move! 

And check out that buddha belly!!

Killian still has his off days. In fact during this same visit, Dad (Papa Garry) said that the first day you could just tell he wasn't himself. That's the scary thing about having Killian at home. With a "healthy" baby, a cry can just be a cry. Or an off day is an off day. But with Killian, every cry can mean something much more serious. And off days put us all on edge. Luckily, they are becoming fewer and fewer.

I love bath time!
Please continue to pray/send positive thoughts for his developmental progress. Lindsey said he's grabbing his feet a lot more and seems very responsive to sounds and games that she plays with him. He's cooing and babbling a lot more too, however the doctors say he's developmentally a 3 month old.

Happy Baby! 
We have been so encouraged by all of your stories of your CDH'ers catching up once they get home. And we also know that the doctors evaluate Killian in 30 minutes. We spend time with him all day and see him progressing! And ultimately, God is in control. He is the great physician and knows what Killian's life will hold.

So I leave you friends with more videos and pictures and our uttermost gratitude and appreciation for your continued love and support! Please take just a few minutes to visit this site, print out a letter and send it to your congressman if you stand with us in wanting more research behind CDH!

Me and Great Grandma Caroline
Everyone says I look a lot like my Papa Garry! 

Ma, gimmie s'more fruit! 
Please also continue to pray for all of the babies and families who are dealing with CDH. There have been a saddening number of babies recently who've lost their battles. Our hearts go out to each and every person who is affected by this terrible condition. Hug your loved ones for an extra second tonight!!

xoxo 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 general care of Killian, medical expenses and increased bills Lindsey may have as a result of his condition.

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.