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.

Tuesday, November 1, 2016

NOV 1, 2016--Nether Region Straw Removal Day!


Good Morning to all of my friends! Today is an especially good morning for me. As you may notice, I do not look terribly happy in the very unflattering photograph to the left but look much happier in the one on the right. What is the difference? The left photograph = catheter insertion and the right photograph = yesterday's catheter removal. Although I have the nicest and most beautiful nurses in the whole wide world, the straws that they insert into my nether regions are just not that small. Many-a-CDH-baby can sympathize with the relief that comes with straw-removal days.

But what is even more exciting, at least for me, is that I may get another straw removed tomorrow--my throat straw! That particular straw is what helps me to breathe. Dr. Kays tells me that I probably don't need it anymore. My mum and dad are a bit nervous to see if I can already breathe on my own, but Dr. Kays thinks that I am progressing super fast! Things change on a hourly/daily basis in the world of CDH, but tomorrow looks to be the day when my lungs may meet the world!

I would like to thank all of my friends for their prayers and continued support. I would not have been able to make it this far without you. I would also like to thank my newest friend, who believe it or not, is also named Noah Abner. Stay tuned for the big reveal tomorrow. Your CDH pal, Noah.

12 comments:

Unknown said...

This is such exciting news! We love you and your amazing family! Sending many prayers for continued health and strength little one!

Unknown said...

Great news! It made my morning to hear your wonderful news! Praying hard for more miracles to come...

Anonymous said...

Such great news Noah! So happy things are progressing. Still sending lots of prayers for more miracles. Go get 'em tiger. - The Meyer's

Unknown said...

Wow, such great news Noah. Baby steps and little breaths, you are amazing.
Love and good thoughts to you and your family.

Debi Vinnedge said...

Wow I am so excited to hear the news Noah! So guess what? After they take out your throat straw and you start to get your voice back, don't be surprised if you scare yourself to hear your own voice cry out! You are such a trooper - keep fighting tiger - I am so proud of you! And praying for you daily...

Unknown said...

We are so excited for you to be tubeless. Keep up the great work and give a wink to your mom, dad, sisters and brother for us. Lots of loving thoughts and prayers for you, champ.

Aunt Snookie & Uncle Grant

Anonymous said...

Donna said... Yeay! Such Great news. Look forward to meeting those lungs! D x

Kris Perry said...

So happy to hear the good news of tube removal and look forward to seeing the next tube removal pic. We'll keep sending prayers for speedy recovery!

Michelle Fenner said...

You are amazing! So happy to hear your progress and good luck tomorrow little buddy:-)

Unknown said...

Hi Noah and family!
We are so excited to here of all of your progress! It looks like you are standing up to the straw removal like the little man that you are! We are still watching for posts everyday on your progress! Good luck tomorrow!

Unknown said...

I get tears reading this Noah.... by the way, you're quite an elegant writer, you'll do fine in English class. :)

Please give your parents a hug for me sir.

Take it easy Noah!

The Fry's

Anonymous said...

Noah! Great to hear you are progressing SUPER FAST, that sounds wonderful. I look forward to hearing about the lungs and how they do tubeless. Much love and prayers to your mom, dad, brother, and sisters.
Dynelle