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.

Thursday, November 3, 2016

NOV 3, 2016--Learning To Breathe

Good Morning to all of my friends!!! What a day of ups and downs. As you may notice, my straw was removed from my throat--a good thing, right? As you may not notice, breathing has been a tad harder for me than I originally expected. My first clue that the day was going to be bit rocky was when the words "Ram Cannula" were uttered. Any medical device that begins with the word Ram simply does not foretell of good times to come. Doctors may be good at saving lives, but I think their marketing skills are a bit questionable: "don't worry, this shot won't hurt at all," they all say. 
 
In all fairness, however, the cannula was more comfortable than my straw. The real downside, however, was simply that I was just not very good at breathing. As a result, I was demoted from my position and fitted with a miniature-sized CPAP. I originally thought my ram cannula was uncomfortable. Compared to the CPAP, however, my ram cannula felt like a silk diaper. That CPAP is like a girdle for the nose (pictures will follow tomorrow). The up-side to the CPAP is that I can breathe much better.
 
My most favortist doctor, Dr. Kays, is trying his best to teach me how to breathe, but I think that I am just a slow learner. I complained all night. And my respiratory rate, like most CDH kiddos, is a bit high--thereabouts of 90 breaths per minute. If you want a good workout for the day, try breathing 90 breaths a minute for a couple of minutes--you should sit down first. I will try to breathe better and complain less today, and then I'll let you know how things go tomorrow. Your CDH pal, Noah Abner.
 
P.S. The first video does not show my finest hour; the second shows me during a brief moment of relaxation.
P.S.S. The videos will not play with Internet Explorer 10 or older. All other browsers will be fine.


6 comments:

Unknown said...

Noah, your parents are on your team and they have your back (& nose)...you will get this!! Breathing and staying calm are hard even for the most seasoned professionals from time to time! We love you SO much but most of all Jesus loves you and is holding you, your amazing siblings, and your parents in His strong, loving hands!!! We send love and hugs and most importantly prayers!

Debi Vinnedge said...

Awww...Noah you are going to do just great! Remember you breathed just fine in your mama's tummy for 9 months so you will catch on quickly! Just think, someday soon you will not have any of those nasty machines hooked up and it will be a lot more comfy for you! Keep fighting tiger - I keep praying!

Unknown said...

Noah...you were so right about new struggles to come. Hang in there little guy. You have a great team and great family and friends pulling for you. Praying for you champ.

Aunt Snookie and Uncle Grant

Anonymous said...

Donna said... Oh my goodness you get more gorgeous every day little guy. I love the video of you sleeping - the happy one ;-) You make me feel chilled just watching you. Big kisses to you. D x

Michelle Fenner said...

You can do it! see, you are learning every day, and are even better at breathing than when you first started. I tell my kids, practice makes perfect! keep practicing Noah:-)

Jenn Ryan said...

Stay strong! Prayers for you all today. Beautiful pics, Noah you are an adorable baby and we can't wait to meet you in person. Love the Ryans