Sunday, January 22, 2012

Lessons Learned in the NICU

Let me first begin with the most important items from today. Killian had a positive day! Just got a text from Lindsey with a summary of today's highlights (remember I am now back in FL so posts won't be as frequent or descriptive. If you have a leer jet or limitless funds and would like me to go back to Nashville daily, I would be happy to do that!):

  • Killian is still doing well with the reduction of his blood pressure medicine. To give you a better idea, they started him at 20 on two different meds. Now he's down to nine on both!
  • They got him down to 81 on the ventilator, but then he started desatting a teeny bit so they went up on it again. Nothing to be alarmed about. I think they are still really happy with the progress he made today.
  • They continue to turn and reposition him and we LOVE that! One we get to see new aspects of his handsome little face and two, the first time they tried nine days ago, his lung collapsed. So the fact that he's handling it means he's getting stronger!
  • We have poopies!!! Lindsey said that (stop reading if you don't think tiny little baby poops are adorable!) he had pooped and when they were changing him he continued to poop :). I mean, really, who hasn't done that?
  • The CRP (infection) test was 220 and is now only 60!! We want it around 10, but we're so thankful that it's dropping. 
  • And I don't know the specific numbers, but she said the blood gas draw this evening looked good all around
On to today's narrative...

As I was flying from Nashville to Baltimore, passing the time during a two hour layover, flying two and half hours to West Palm Beach and then driving 45 minutes back to Ft. Lauderdale (I didn't mind at all because I had pushed my flight 3 times to spend more time with our guy) I had some time to reflect on our last 20 days in the NICU at Vanderbilt Children's Hospital and jotted down some words of wisdom. 

For anyone who has been in our position, you'll know what I'm talking about :). These are in no particular order. 

Lessons Learned in the NICU (a lot of these are food related...hmmm?)
  • Laughter is the best medicine.
  • In order to laugh, it is completely acceptable to mildly sexually harass the attractive, young male doctors. They secretly like it. "Dr. Ben, the color of that shirt really brings out the green in your eyes."
  • You can go five days without washing your hair before people outwardly start to judge you. 
  • Take the airplane peanuts when they offer them. You may go 8-10 hours before you realize you haven't eaten and the Southwest honey roasted peanuts at the bottom of your purse could save your life. 
  • Hug the ladies at the front desk of the waiting room and Ronald McDonald Snack room every time you see them. By doing this, you will bring them joy (and get more snacks and fresh coffee).
  • Don't use the hospital tissues in the box in the "Quiet Room" because they are low grade sandpaper. 
  • Hug each other often, and for at least six seconds. 
  • Pray, read the bible and sing (badly in my case) aloud to your baby. 
  • Bring your own towel because the towels in the sleeping room are the size of toilet paper square. 
  • There are no calories in crisis, so eat up!
  • Oddly, in the NICU, your pants will feel tighter. This is in no way related to the previous point. 
  • Ask other families about their babies and pray for them by name (Isayah, Rylynn, Angel).
  • THANK EVERYONE. I'm talking janitors for cleaning up your mess, nurses for being kind and the guy at Ben and Jerry's downstairs who gives you an extra scoop of ice cream because he can see you are puffy eyed and runny nosed. 
  • Stake a claim on the one recliner in the waiting room and defend it with your life- take shifts guarding it if you have to. Think rabid dogs with a bone. 
  • Laugh a lot, cry when you want and learn to be still. 
  • Also, learn to sleep in really awkward positions.
  • It's okay to ask 17 times what the "white number" means...and still not understand. 
  • For a mini praise and worship session, all you need is an iPhone and YouTube. 
  • Sleep and calendars are overrated. "What day did that happen?" 
  • If you sleep eat on Ambien, don't sleep in a room full of snacks (or a waiting room with left over donuts in it).
It's an Ambien Layna sighting! She's like a yeti. No one's every caught her on camera!

MORE PICTURES (trying to do a better job explaining who is who)!!! 
Mommy (Lindsey) and Killian

Lindsey, Grandma Val (Lindsey's Mom) and Baby K!

Lindsey, Ker-Bear (step/second mom who won't let anyone call her Grandma), Dad (Lindsey & Layna's) and Mr. Man.

Uncle Todd (Grandma Val's son) and Killian just chillin'

Grandpa Barry story time (Lindsey's step/second dad). So distinguished with those glasses!

Aunt Layna sleeping creatively 

Killian's stuffed animal collection

Hugs from Florida!

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.

Any donation you're able to make will help this sweet baby boy - from getting his family to & from the hospital to helping with Killian's care. From all of us who love Killian and his family, thank you!

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.

1 comment:

  1. thanks again for updates!! You are wonderful. So glad to hear things are getting better. And, yes, so true about the NICU days. ;o)