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.

Friday, November 18, 2016

NOV 18, 2016--Blood Clots & Babies

Good morning to all of my friends, especially to my new friends from Mozambique and Mexico!!! Admittedly, life has been pretty good as of late. However, Dr. Kays informed me that I have acquired one or two blood clots in my aorta. The aorta is that super big artery that runs from your heart all the way down your abdomen. From what I know, babies and aortic clots don't get along very well. As a result, one of us has to go, and it ain't gonna be me.

Dr. Kays did tell me that the probability of one of the clots causing a problem is really pretty small; however, he did say that if things were to go wrong, then they would go really wrong--like I would lose a toe or a foot or a leg or something like that. I told him that I wanted to keep all of my feet and all of my toes. He agreed that preserving my appendages was a pretty good idea too. So, I think that I'll be taking some Lovenox injections until the clots vanish. There is a commensurately tiny risk when taking Lovenox injections--brain bleeds. But I told Dr. Kays that because the risk is small enough and because I have a lot more brain cells than toes, we should charge full steam ahead with the injections. 

I'm not overly worried, but silly complications like this do give a baby like me some pause. In the mean time my friends: enjoy a stress-free and clot-free day. Your CDH pal, Noah Abner.

6 comments:

Unknown said...

Dear Noah - Let's hope that Lovenox works quickly and well. Seeing you in your mama's arms is a great way for me to start my day. :)

Unknown said...

I love seeing pictures of you snuggling your mommy...she needs lots of snuggles, so keep up the good work!!! I'm so glad things are going well and we will pray that these clots say goodbye soon!

Anonymous said...

Beautiful momma and baby!

Anonymous said...

Donna said... Oh my the fun never ends for you little man. Lovenox is a cool name for a cool drug that will hopefully do the trick! Thinking of you all and sending huge hugs and kisses. D x

Debi Vinnedge said...

Boy Noah you sure know how to keep us praying for you don't you? Well, that's a good thing! Ya gotta like the name of that drug they wanna give you - LOVEnox...I love it! Keep holding on to mama like that - she REALLY LOVES it too! Can't wait til I get to hold you someday so keep doing whatever they tell you...you are growing stronger and more beautiful by the minute!

Unknown said...

Hi precious! Given the fact that lovenox has the word 'love' in it can't be all bad. Praying that this 'love'nox will take care of those nasty clots.

Keep on keeping on, precious Noah.

Love you sooooo much!!! Aunt Snookie & Uncle Grant