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.

Saturday, October 22, 2016

Fun Times For Me, Not For My Friends








Dr. Kays was right, the second day was a  roller coaster. Most of the day I was doing just fine, but then, about my bed time, things went absolutely crazy. My oxygen levels plummeted, as did my blood pressure. I would stabilize, then destabilize. My heart beat took off like a rocket, and I couldn't breathe very well. My chest was rising and falling like I was sprinting a marathon, but it was a race that I just couldn't win.

So, I got to try nitric oxide, which was kinda neat. And then, all of a sudden, I had seven of my friends in the room helping me! Dr. Kays was telling everyone what to do, and then he'd just stand still and think. Think, think, think, he did until finally he would adjust this knob or that knob or tell someone what to do. My good friends and my parents hung out with me for the entire night. In fact, Dr. Kays was such a good friend that he slept beside me until morning. What a guy! I'm pretty sure that everyone's hearts were racing as fast as mine, but in the end my heart and lungs finally relaxed and so did theirs; the sun rose over me, and I was able to live one more day. And what a day it was. And now, I'll try to enjoy yet another day. To my good friends out there, I do hope that you can do the same.

15 comments:

Anonymous said...

Phewf!!! Good for you Noah. Good you have such a great doctor and an amazing family. I have been looking to hear how you were doing since the sun rose here in Ireland... �� and I am so relieved to hear you are such a fighter. D x

Nate and Jess Harris said...

Continuing to pray for you all.... ❤️

Unknown said...

So happy little Noah is blessed with such a great doctor, family, & friends. Praying hard for that little boy...

BAC :) said...

You keep fighting, sweet man!

BAC :) said...

You keep fighting, sweet man!

northj2002 said...

Praying! Keep up the fight!

northj2002 said...

Praying! Keep up the fight!

Anonymous said...

Praying for you, dear Noah! You have an amazing doctor and an even more amazing God!

Melissa Parks said...

My husband Greg and I have had the privilege of hearing your story through your brother and sister-in-law Chris and Betsy. We pray for your sweet baby every day and our four year old Violet always ends her prayers with a request for Noah to meet his family. We are so grateful that the Lord has answered this prayer. We continue to pray that the Lord guide and protect your family on this journey you walk with with your son and thank him for each precious day that you have with Noah.

Janet said...

Keep going Noah...you're one of the strongest little guys I know. Then again, you have a pretty amazingly strong mommy and daddy. Praying for you and checking in on you each day.

Marea said...

Hi Noah! I'm so glad that you are enjoying every day so far and pray for MANY MORE!! What a story! And, your momma is an amazing story teller! We are praying for you all the way over here in Saudi Arabia! God lives here, too!!!
xoxo

Unknown said...

welcome Noah and so grateful to hear that you're here. in my prayres

Tiny Hero-Annie said...

Hi sweet Noah! Well you are giving everyone a hard time- but that is how you warrior CDH babies are! There is no other place on earth where you could be taken care of better- so you just enjoy the roller coaster and try not to be too hard on your mom and dad. We will be praying for and thinking of, you all the way from UTAH. Your fellow CDH buddy Adam says "Good Job Noah!" (rocks with the fist)
Love,
The Zolman family

Unknown said...

My heart was in my throat reading this. Continuing to pray !

Unknown said...

Welcome Noah and congrats Mom and Dad!!!! ❤️Shannon and Daniel, Dave and I have been in prayer over your family. We miss seeing you two but we have enjoyed seeing/playing with your littles when Chris and Betsy would watch them. This particular journey with your sweet boy, we have prayed over your family and Noah each night. We have been in the loop a bit through Chris and Betsy. We continue to pray over Noah and your minds and hearts as God walks you through it all. Praying for healing, strength, peace and comfort. Go Noah!!!! I praise God for what He has done and is doing through you and your family.

Love and blessings,
Erika, Dave, Anisa, Shayla and Alan Engel