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, October 31, 2016

OCT 31, 2016--Eyes Wide Open

Good Morning! I hope all of my friends (including my new friends from Finland), had a restful weekend. Some of my friends have noted their disappointment in my failure to post anything yesterday. I am truly sorry; I slept through the day. What can I say--I'm a baby on Fentanyl.
 
So I told Dr. Kays about it. I asked him whether we could start my wean off of it. For those that don't know, "fentanyl is a strong agonist at the μ-opioid receptors and is estimated to have about 80 times the potency of morphine." Oh, the things a baby learns in the hospital. But what does that mean in baby-terms: it means you sleep through the weekend. That's what it means! I am still on it--just a little bit to help out with the pain from the abdominal-sized scar and the straw they put down my throat. But what it also means is that I can now open my eyes--and what a sight. My mama looks great, which is good news, but my dad is a bit questionable. She must love him for his personality or something.
 
Well my friends, I best be off. I have a big day to enjoy with my eyes wide open--just as you do! I look forward to hearing from you soon. Your pal, Noah.
 
P.S. If you are so interested, the video posted below is one of me learning how to yawn.
P.S.S. Internet Explorer 10 or older will not play the posted video.
 

 

11 comments:

Unknown said...

Dear Noah, this is the mom and dad of Laura Sattgast who is your mom's and dad's friend. We have been praying so hard for you for the last 2 weeks, and we are so happy that you are doing so well. Jesus truly has you in His hands! Your latest video made our day, and we will keep praying for your strength and healing. May Jesus hold you and your family close!
Our love, John and Rebecca Duerr (From: Warren , MI)

Unknown said...

Good Morning Noah. Yeah!! You're doing good. We're praying for you big guy. I like your blanket. I see you're a baseball fan. Looks like you are a Cleveland fan (since your aunt JoJo and Uncle Andrew are Ohioans). Keep hitting those home runs Buddy! Looking forward to the Grand Slam when you get to come home to the West Coast. Thank you Lord Jesus - we give you praise this morning.

Unknown said...

Little Noah - How I love seeing your eyes open and your little legs moving. Keep fighting! I hope that the decrease in fentanyl makes you want to take a breath on your own more often... xoxoxo

Debi Vinnedge said...

There's the most beautiful eyes I wanted to fully see on Saturday! Hey, all I got Noah, was a half an eye wondering who that person was in your room! I love the yawn video too...you will want to do that and close those eyes at nap time for mommy and daddy...keep fighting tiger - so proud of you!

Janet said...

Oh Noah, I love so much seeing your eyes open and you moving around a bit. You get lots of rest and take good care of yourself. We continue to keep you in our prayers and thoughts. Love, Janet xoxo

Unknown said...

What a great halloween 'treat' to see your eyes open so wide. You are such a cutie and we are so glad that you are continuing to gain strength. We love you and the fam lots. Keep the posts coming...you're such a great communicator for such a young age. ;o)

Love you baby!!!
Aunt Snookie

Carolyn said...

Ahhh Noah you're so adorable! Good job on the recovering process little guy!
Happy Halloween to you, Lincoln, Yohanna and McKenna : )
Carolyn Miller

Anonymous said...

Noah, you have the most beautiful eyes! Thank you for sharing them with all of us. We have been so excited to hear of your adventure and know you are doing well. Love and hugs from California
Dynelle

Unknown said...

Hey Sister,

I love you! You are such a strong woman and you made a strong little Noah! :)

Praise God! Many times I dropped to my knees in prayer for this little guy. I think he will grow up to become a strong man of god. What a happy miracle he is! :)

Love you all very much!

Sincerely,

Eric Lundgren
AKA "Uncle E!" :)

Patrick said...

Noah, beautiful eyes! And what an impressive yawn! Keep it up and stay strong!
No worries about your dad. He's quite a guy and certainly the best dad. We miss you all...

Anonymous said...

Donna said...
Oh wow what great news! I am so proud of you and your family for being so strong in so many ways. Love that you had a 'chilled' weekend. D x