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.

Monday, November 14, 2016

NOV 13, 2016--BLUE NIPPLES

Good Morning to all of my friends! I have a confession to make: I'm a little self-conscious about my eyes. You wanna know why? Because they take up about 20% of my face! If my lungs were just one-half the size of my eyes, I think that I could have jumped ship about two weeks ago. My mom says that she loves me for "who I am." But we've all heard that before. Its code for, "the baby next door is cuter!" Oh well, I suppose that nobody is perfect and that I should be grateful for what I've got.

But what about this blue thing that the nurses call a nipple? I have no idea what they are thinking?! It doesn't work at all. I suck and I suck and what reward do I get for it: absolutely nothing. I know that I may look a little slow, but I no one thing: it ain't real. How am I going to argue though? I can't even talk. So what do I do? I suck on it anyways. For whatever reason, my sucking on a fake nipple makes my nurses and my parents feel like they've accomplished something. Big people are funny that way.

But in all seriousness, I did recently check on my right lung. From what I could tell, its about one-third the size of normal. I'll soon try to post an x-ray picture for those that are radiologically savvy. Dr. Kays and I would definitely like to grow it bigger before I leave. Hence my fake-nipple-sucking regimen. The rumor on the street is that they're training me up for the "real deal." Because I now know how to breathe, I now need to learn how to grow. For me to learn how to grow, I need to learn how to eat (I get it, not knowing how to eat is a peculiar problem). So, I guess in the end, it all makes sense: I have to suck on a fake nipple. I suppose that sometimes life requires that we all have to. Your CDH pal, Noah Abner.

8 comments:

Anonymous said...

After being out of touch with your blog for the weekend, what a wonderful surprise to wake up this morning and see your BEAUTIFUL eyes and read your fantastic news from the past few days!
Way to go! Prayers for your "Thriving" future coming your way!

Debi Vinnedge said...

Aw Noah I LOVE those eyes! You didn't have them open much for me when I saw you last - they are now wide open and alert and gorgeous! And ya know what? Guys with big eyes are a shoe-in to get all the best girls too! :-) Glad you are learning to suck on that fake nipple too - wait til you find out what will come next ....mmmm-mmmm- good! Praying for you continues Noah...

Unknown said...

Hi precious baby! I just want to kiss that cute face of yours! We are so happy that you are improving each day. Do you get to see your siblings more often now that you past day 23? I sure hope so. Maybe you can talk mom and dad into doing an Us'y...commonly known as a selfie. ;o) We will continue to pray for you to get stronger and for your right lung to get bigger. Keep taking big breaths baby.
Lots of gently hugs and kisses, Aunt Snookie & Uncle Grant

Unknown said...

What a beautiful sight for MY eyes - looking at your bright little eyes staring out over your fake nipple. Learning to do new things is a lot of fun - just think of this as another opportunity to practice a Growth Mindset! xoxoxo

Unknown said...

Beyond precious, sweet Noah...your eyes are beautiful and perfect! You are amazing! Keep up the good-hard work little man! Love, Your Michigan Cheering Section

Janet said...

thinking of you always...great job Noah. You're perfect

Mary C said...

Wow Noah! You are so irresistible! I love how the nipple matches your beautiful eyes!It's all worth it! Can't wait to see what God has for you! Your life has been an adventure from the start and we continue to pray, watch and cheer you on! Lots of love from Lynden!

Anonymous said...

Donna said... Too cute on all fronts!!!

D x