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,NoahP.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.
OCT 25, 2016--A GREAT DAY BEFORE MY BIGGEST DAY
I got to meet my brother and my sisters! And what pals! I knew they loved me, but they just kept hugging and kissing me. It wasn't a good time; it was a GREAT TIME!
But the day wasn't all good. Doctor Kays called me FAT! He said, "Noah, your fat. You need to lose some weight before surgery." I replied, "What? I'm fat? How can I be fat if I'm only 5 days old?!" He said, "Noah, you're so puffy because your so full of water. How can I move your liver from your chest into your tummy; I have to make it smaller."
So what that means my friends, is that I need to lose a lot of water weight so that all of my skin is pliable and so that my organs are as small as they can be. But the problem is, whenever I lose water, my blood pressure drops. If my blood pressure drops too far, then I begin to "crash." So, I'm in a little bit of a tricky situation. I need to lose lots and lots of water without losing blood pressure.
In any case, Dr. Kays is going to try to fix me tomorrow. It will be my BIGGEST and SCARIEST day. I really need all of my friends to be praying for me--all of my friends from Taiwan, Saudi Arabia, and the United States; all of them from Canada, Germany, Ireland, and Spain; and all of them from Switzerland, Austria, the Ukraine, and Kazakhstan! Please let all of my friends know because little kids like me can have really bad days during and after surgery. I'll do my best, but I need your help. Your pal, Noah.
P.S. My friends, I made it easier to comment--no verification required anymore.
28 comments:
Oh my goodness. We will pray even more fervently now. Hang in there and keep us posted. Remember Exodus 14:14.
-Stephen & Mildred
We are so glad you got to meet your sisters and brother. They are pretty awesome!
We will continue to pray for you and your surgeons. Sending lots of �� - the Meyer's
The �� are hearts. Sending lots of love!
We missed your update yesterday but I hoped you were doing what you do best - fighting away!!! So glad to hear folk are talking about surgery... that is great news. Being called fat - not so good :-) Keep going wee Noah. You are much loved and prayed for all over the world. D x
Praying for you Noah - keep fighting. We're all cheering you on from Redmond. Take care Mommy, Daddy, sisters and brother. Love, Janet
Everyone in Ireland praying and lighting candles!
Hello Daniel and Shannon,
This is Ashley, one of your grandfathers caretakers. I never got to formally meet you guys at your grandmothers services, but I wanted to let you know that you have all of my families prayers! I can't imagine the roller coaster of emotions that your family is on. I am 24 weeks pregnant and can't imagine the anxiety that goes with such a diagnosis. But I do know you have a lot of prayer warriors behind you, and God is on your side. Your little man is just perfect!!! And we are praying HARD that all is well!! Stay Strong Little Noah!!
You are so blessed to have such loving siblings Noah! I will be praying extra hard for you little fat boy! :-) God has His Hand on you - I just know you are going to do great! Lotsa love...and even more prayers!
Dear Noah and family, you have a BIG crowd of praying families here in Cincinnati who love your Aunt Beth and therefore anyone SHE loves!
Oh little Noah! I am so happy to see this update from you! YES! Great job being so strong. Seeing pics of all the kids makes me tear up. Miss you guys so much!!!! We will be amount up our prayers even more over the next few days! Bless you all!!!!! Love from Ben, Jenn, Audrey and James
I meant amping up our prayers ;)
Your in our prayers too. Schafers
So thankful you have met Lincoln, Makenna, & Johanna! They are very special and love you a lot. We are all praying that you continue fighting the good fight!
Praying for you in Texas! Noah, you are a blessing! May God's strength be with you all during and after surgery. Remember who is in charge. Love you all.
Sue Fisher
Noah Abner, you're one tough and brave little man! Lots of love and support from your Mom's and Dad's German friends. We're so glad to have the chance to get to know you through your blog. You are in very good hands. Hang in there...
Lord we are so thankful that you love Noah. We ask for your protection and your healing hand upon him! Please hold his pressure steady while you decrease his water weight. Bless his family and hold them all very tight. Amen
Wishing you all the love and luck in the world little one. I will be, and have been, thinking of you and all your family.
Much love,
Louise (Spain)
Hi Noah. I an old friend of your great aunt, I think you all call her Snookie. I just called her Mary. We grew up on the same street. Anyway, my wife Holly and I have been following you in this journey thru your blog. We have been praying for you and just know that you will be just fine. Stay strong and hang in there, ok?
Lots of love and prayers for you Noah and family :)
Hi Noah...So happy to see you got to meet your brother & sisters! Cullen & I are praying for you and sending you positive thoughts & good juju...lots n lots of love!
Our prayers continue Noah. (((Marv and Jan)))
Praying for you all! -April
Love that baby Noah was able to meet those sweet kiddos. Your family is raising very special children meant for amazing things . Praying fervently for Noah's successful surgery and for you all as you are dealing with this incredibly stressful time !
La Resistance and the Fry family are still thinking about you Noah, stay strong little man :)
You're amazing Noah! We know that there are angels surrounding you - both physical and spiritual! What a great team and family you have. Your Church family is praying for you here in California & celebrating that you came through the surgery so well. We'll keep praying - you keep fighting!
Lots of Love from the Brown Family
Dear Noah,
We will be praying especially hard all day tomorrow for you from up here in British Columbia and for your whole family. God bless you!
Connie and Tom
Dear Noah,
Everyone is Dublin is sending their love! You're in our prayers!
Best Wishes ....
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)
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