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.
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 4, 2016
NOV 4, 2016--Busy Day!
Good day to all of my friends! I must apologize for posting the blog late. Dr. Kays and the hospital had my schedule booked for the entire day. First, I had my CPAP messed with to help create a better seal. Then after that, Dr. Kays showed me how to blow bubbles with it (see upper right pic). Then after that, my nurses--who are fabulous by the way--thought that I was a bit ripe, and so I had to suffer through a bath. Then, one of my IVs failed, so I had to get a new one. But I must say that it was all worth it, because when all was said and done, my mama finally got to hold me for a little bit. So all in all, it has been a good and productive day!
On a more technical note, my chest cavity may have retained a little too much fluid; it looks the water may be compressing my already-small lungs. We talked it over and debated between putting a chest tube in me or 'diuresing' me--think laxative for your bladder. If I don't flush enough fluids, I might be getting tubed up soon. But it'll be worth: short-term sacrifice for long-term success!!!
I appreciate all of you and everything that you have helped me with. I have more friends than I could have ever imagined. I don't want to overpromise--because I'm still pretty sick--but I am not in as precarious position that I was just one week ago. I just gotta get this breathing thing figured out. Please enjoy your day, and I'm going to try to enjoy the rest of mine with my mama. Your pal, Noah Abner.
Subscribe to:
Post Comments (Atom)
8 comments:
Oh Noah - just wait til you get to blow real bubbles with your brother and sisters someday - now that will be real fun! Glad to hear you are doing so much better and you got to snuggle with mom! I know she loved that too! I can't wait til the day comes when I get to do that too! Keep fighting little tiger - and I will keep praying!
So thrilled that your mama got to hold you. That always makes my little ones (when they were little) feel better! Still praying your strength and feistiness! Love seeing your bubbles....
Noah,
Keep working at the breathing, it'll come. Shannon, I'm so glad you got to your beautiful boy. Hang in there guys, love and prayers are being sent from all over the globe.
Hugs,
Dynelle
Praying for you every day and those mama cuddles, they are absolutely the best medicine around. Keep being strong and doing what the doctors tell you. Xoxo
There is something so beautiful about mommy holding her precious baby. What a blessing for both of you! Praying for you sweet, sweet little man.
My the lord bless you and keep you, may the lord make his face shine upon you. May he grant you favor and give you peace. I pray this over my children every night and am saying it for Noah too. xxx
Wow Noah! to be held in your Mama's arms must have felt awesome. Keep going like this and you and your lungs will figure out how to cooperate!
Donna said... I have goosebumps looking at the photo of your Mama holding you. Keep fighting wee man! D x
Post a Comment