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.

Wednesday, November 2, 2016

Nov 2, 2016--Boys and Their Toys

Good Morning to my friends yet again!!! I first must apologize for my false advertising: as of this writing, I still have a straw down my throat. Perhaps I'll have it removed this afternoon. From minute to minute I don't really know what is going to happen until it is already happening. The nurses and doctors tell my parents everything, but they don't tell me anything.

So, in the mean time, and being that the news cycle is slow, I figured that I would show off some of my toys. Now, I know that my room looks to be a bit of a mess, but I know exactly where everything is. How many parents have heard that before? My ventilator is on the lower right. It pushes however many breaths I may need, but if I want, I can breathe on my own at the same time. It also gives me some pure oxygen--delicious. On the left are my micro-pumps. Right now, I'm running eight pumps. I have absolutely no idea what's in them. Hey, do you read the ingredients printed on that microwave meal package? I didn't think so. The TV in the upper right tells my nurses whether my head and kidneys are sufficiently saturated. The roof above me regulates my temperature, and the TV in the upper center tells my nurses my blood saturation levels and my blood pressure.

I'm still doing my best. They gave me some fluid and blood yesterday because my blood pressure has been persistently low, which wigs my parents out. I don't know why my pressure is low. It is a bit of a mystery. Unlike my parents, I guess that I am just a pretty relaxed guy. I suppose its never a good thing to be too stressed anyway--I think that I need to remind my parents of that. That being said, I do hope that you can have a relaxing day too.

In any case, I will definitely be in touch. Your CDH pal, Noah.

7 comments:

Debi Vinnedge said...

Noah I would tell your parents low BP is probably better than high BP - that's what happens to me when I get upset! Glad you are chillin' with all those toys - you do look pretty relaxed with that comfy green blanket! Keep fighting, tiger and I will keep praying!

Mary C said...

Wow Noah! Thanks for showing us your "toys"! I think it won't be long before you get some "real" toys. Meanwhile, being relaxed is a good thing. Let the doctors, nurses and machines do their part. We, your friends will keep doing our part by praying and cheering you on little pal.
Tell your grandma I said "hi" okay?
You are loved!

Mary M Lynden, WA said...

Dear Noah, You probably don't know it, but you are a very handsome young guy! Thank you for all the updates, I thank Jesus along with everyone for your miraculous progress and am so looking forward to meeting you when your family brings you home.

Love and prayers,
Mary M


Jonathan Biard said...

Hi Noah and Shannon and Family - this is Jonathan Biard from Microsoft in Rainy Seattle. Thank you so much for the wonderful blog updates, and I'm so thrilled to see all of the amazing progress! It probably feels a bit slow and uncertain at times, but know that God loves you all so much, and He has you all safe and sound in His love and caring arms. He is Bigger than even this situation. You are definitely in our prayers, and can hardly wait for the big party when you get to come home! Shannon - if there is anything that my wife and I could do to help your family, please don't hesitate to ask! We would be thrilled to help in any way we can. Prayers and Blessings - Jonathan

Unknown said...

Keep working on that blood pressure Noah! We are still praying for you!

Marea said...

We didn't get to meet his new friend with the same name?!

Anonymous said...

Donna said... Sorry I didn't write yesterday but I was up seeing my Dad and family. Great thing to have a family that you love and that you love you. You know all about that little Noah as you are loved by friends and family all over the world. D x