Hi, my name is Noah Abner Clark. During my 20-week ultrasound, I was diagnosed with a severe right-sided congenital diaphragmatic hernia. Essentially, my diaphragm failed to fully form, and thus, many of my abdominal organs (namely my liver), herniated into my chest which in turn inhibited the growth of my emergent lungs. The average survival-rate for babies specifically like me is around 50%--a proverbial coin toss. My mom and dad thought that perhaps in-utero surgery would be best, but they ultimately decided that for my case, surgery after my birth would give me even a better chance to survive.

In order to find the finest care, my parents consulted with or actually visited many far-away places, including San Francisco, Houston, Cincinnati, Philadelphia, Denver, Baltimore, and Seattle. Ultimately, however, we decided to travel 3500 miles from home so that I could be born and live at Johns Hopkins All Children's Hospital in sunny St. Petersburg FL. My doctor is Dr. David Kays and my nurse is Joy Perkins. You should pray for them.

My road will be long, one potentially wrought with many setbacks and "close-calls." I'll do my best, but I would appreciate some much-needed help. So if you would, pray for me. And if I don't make it, still know that it is "well with my soul."


Sincerely, your pal,
Noah

P.S. You can learn more about what I'll be experiencing if you watch "Adam's Story"--a video my folks found while surfing the web. Right-click HERE.
P.S.S. Check back regularly to see my blog updates.

Friday, November 11, 2016

NOV 11, 2016--Coach Mom

Good afternoon to all of my friends. I would like to welcome my newest friend from Iceland: velkomiĆ°! Well, in my short life, I've discovered that proficiency builds confidence in one's self. And thus, although I cannot breathe to save my life, i've mastered the skill of expectoration--i.e., throwing up. Its a skill used not only by college students of the half-witted type but also by CDH babies. In some babies, they expectorate so much that another surgery is required. I told Dr. Kays that I would like to avoid that. He's pretty good at taking recommendation from babies, so he said that avoiding surgery would be our current modus operandi. I have a mucho grande upudate tomorrow, so stay tuned! Your CDH Pal, Noah Abner.
Below are two videos of my mom trying to get me to breathe slowly.
P.S. Internet Explorer 10 or older will not play the home videos.

4 comments:

Debi Vinnedge said...

Love these videos of you Noah! Eyes wide open and listening to your mama! Good boy - you will have to do that a lot in the coming years! Can't wait to hear the big news you are going to tell us tomorrow! Keep on breathing little buddy...praying for you always!

Unknown said...

Oh sweetie...You are so precious looking into momma's eyes and listening to her voice. Hang in there little buddy. We will pray that your breathing gets easier for you and that you don't expectorate so much. ;o) Please thank Mom and Dad for keeping the pics coming..it's great to be with you on this journey it makes the miles between us feel smaller.
Lots of gentle kisses and hugs, Aunt Snookie & Uncle Grant

Anonymous said...

From Donna... You just get cuter by the day. You are just gorgeous! Well master one thing at a time! I look forward to hearing from you and seeing your development every day. Take care wee man. D x

Unknown said...

Noah, you really are a handsome boy! Such beautiful eyes! And I can tell you sure do love your mama!
We will still be thinking of you and hoping that breathing becomes easier for you very soon.
Connie and Tom