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 23, 2016

NOV 23, 2016--Conspirators In Crime


Good morning! It is one day before Thanksgiving, and I already have so much for which I am thankful. First, that I have lived to my 33rd day; second, that I have hundreds of friends from around the globe; and third, that I have a brother, Lincoln, who relentlessly fights on my behalf.

In fact, Lincoln snuck into my room the other day and gave me a bit of a pep talk (as you can see in the above-left photo) about how I could expedite my discharge. "Listen to me brudda. This is how we gonna bust you outta this low-security joint," he said. "First we gotta snap your PICC line, and then the nurses will have to take it out." My PICC is the catheter that is inserted just above my heart to give me all sorts of goodies like baby Gatorade and liquefied fat--yum. So I took his advice and snapped my PICC. "Now that your PICC is broken, pull out your IV," he said "Got it," I replied. "Now we gotta get to your new blue ride (see Nov 20 Post)..."

It was at that point that the nurses realized that all sorts of shenanigans were going on in my cell, and so they busted up our plan. But Lincoln was right: the nurses had to remove my PICC line; plus, they removed what was left of my IV. I thought life was good until I realized that without my PICC, I had to increase my oral feeds by about 33%. Did you hear that: 33%! That's like eating a Thanksgiving meal for every meal! I can assure you that with that kind of consumption my diaper will be hanging on for dear life as it will be 'Yours Truly' who will be beginning to round out like a Butterball turkey. So what's the lesson? To tell you truth: I am not entirely sure. But I think it may be that not all well-meaning advice is necessarily good advice, even if given by family. My stomach can certainly attest to that. Or perhaps the lesson is simply that one should not eat too much. Either way, be thankful my friends. Your pot-bellied CDH pal, Noah Abner.

3 comments:

Unknown said...

Noah, what an awesome big brother!! We love your whole family!!

Unknown said...

Good morning Noah....I does look like you and Lincoln are up to something. Ah the bond of brothers. ;o) We are looking forward to your special announcement tomorrow. Hang in there little buddy and keep on eating.

Lots of love and prayers for you and the family.
Aunt Snookie & Uncle Grant

Anonymous said...

From Donna... Well hello there Noah. What a lucky guy you are! You look so alert and Lincoln seems to be taking care of you well. In Ireland we don't really celebrate Thanksgiving but I continue to give thanks for you bring so fantastic. Love and hugs and kisses. D x