OCT 31, 2016--Eyes Wide Open

Good Morning! I hope all of my friends (including my new friends from Finland), had a restful weekend. Some of my friends have noted their disappointment in my failure to post anything yesterday. I am truly sorry; I slept through the day. What can I say--I'm a baby on Fentanyl.

 

So I told Dr. Kays about it. I asked him whether we could start my wean off of it. For those that don't know, "fentanyl is a strong agonist at the μ-opioid receptors and is estimated to have about 80 times the potency of morphine." Oh, the things a baby learns in the hospital. But what does that mean in baby-terms: it means you sleep through the weekend. That's what it means! I am still on it--just a little bit to help out with the pain from the abdominal-sized scar and the straw they put down my throat. But what it also means is that I can now open my eyes--and what a sight. My mama looks great, which is good news, but my dad is a bit questionable. She must love him for his personality or something.

 

Well my friends, I best be off. I have a big day to enjoy with my eyes wide open--just as you do! I look forward to hearing from you soon. Your pal, Noah.

 

P.S. If you are so interested, the video posted below is one of me learning how to yawn.

P.S.S. Internet Explorer 10 or older will not play the posted video.

 

 

OCT 29, 2016--RELAXING IN THE FLORIDA SUN

Good Morning to all of my friends yet again! We have made it to the 9th day! Although I am far from being ready to leave the hospital, I am beginning to relax a little bit. I tried to get dressed, but the nurses said the most that I could wear was my diaper and sunglasses. I kinda like the free-spirit vibe here in Florida. In fact, if you head to the beach, most everyone else is wearing just underwear and sunglasses too. We all know how the expression goes--"When in Rome..."

Aside from my wardrobe adjustments, I also weaned from my Nitric Oxide. I must confess to you all: that stuff is like catnip for the lungs, but its a good step in the right direction to get off of it. Weaning from my ventilator and O2 is going to take quite a bit longer. Right now, the ventilator gives me about 38 breaths a minute. If I feel like it, which isn't often, I'll breathe some on my own . If I don't feel like it, which is most of the time, then I just take a nap.

Well my friends, it has been a wild ride thus far. Although, it may look like it, I am not letting my guard down. We've gotta a ways to go with some stressful days ahead. But even so, we babies like to yuck it up with the nurses whenever we can. Please keep in touch. Your Pal, Noah.

P.S. Its the 9th day, and we've had 10,000 hits on the site! I love all of my friends. Thank you for all of your prayers and encouragement thus far.

OCT 28TH, 2016--A Brother's Touch

Good morning yet again to all of my friends!!! After having been pricked and prodded, repeatedly messed with, and even cut open, I still find that I can't complain. You know why? Because I have been blessed with a brother-of-a-lifetime. I never knew that a four-year-old sibling would care so much for a broken kid like me. His name is Lincoln. 

For example, when I was in my mama's tummy, Lincoln was always afraid of waking her up in the morning for fear that I wouldn't grow big enough. And when he earned enough money from his "money chores" to buy a toy, what did he do? He bought one for me instead of himself! And when he first saw my mama on the day of my birth, he didn't think of himself. Instead, with a quiver in his voice, he asked about me: "Mama," he said, "is Noah alive? Is he going to live?" Well, I sure hope so, because its a good thing to be born, but its a better thing to be born with a good brother. I do hope to share him with you all some day. Your pal, Noah.

P.S. I would like to also welcome two of my newest friends who live in the far away countries of Iceland and Mongolia!

Good Morning!!! With help from my friends, I have lived to my 7th day, and not only that, it appears that I am on the road to living many more. My mama cried when she said 'good-bye,' but that just goes to show what a good mama I got. Dr. Kays, Dr. Snyder, and about eight of my other friends hung out in my room for a couple of hours. They put my liver, gall bladder and bowel back into my tummy. Saving babies like me is "all in a day's work" for them. But their "day's work" means a lifetime of smiles for me and my family. They deserve a boisterous round of applause. 

I did ask Dr. Kays, if I could get up and go play after my surgery. Of course, we all know doctors--he said 'No.' I can only watch TV and drink my TPN. He told me that he and I have taken a big step, but that I am not out of the proverbial woods yet. I still need to be weaned from my ventilator to see if I can breathe by myself. That will take at least one week or more. And then I need to learn how to eat and see if my tummy knows how to keep food inside. "Slow and steady," Dr. Kays always says. "Slow and steady." If I keep going the course that I'm on, then perhaps I could meet all of my friends one day! Your pal, Noah.

OCT 26, 2016--SURGERY DAY!

Good Morning--a wink to all of my friends out there! Dr. Kays and I consulted, and we felt that high-noon (12 PM EST) would be the hour that the knife drops! I was originally scheduled to undergo surgery in the operating room, but after I spoke with Dr. Kays, I convinced him that he should do the surgery in my bedroom. That's right, their giving me VIP service--the operating room comes to me! Although I have become pretty stable, things like movement, temperature changes, and equipment changes could cause me to become otherwise. Honestly, I wonder if Dr. Kays wanted to do the surgery in my room simply so that he could have a view of the ocean while he was operating on me. Yesseree, the hospital was so nice that I was placed in a room with an ocean view! 

In any case, everyone give Dr. Kays and his team a prayer, a nod, and a pat on the back. They truly are first-class. He did mention that he and I need to try our best if we're going to get through this. I told him that I would offer nothing less.

My friends, I am looking forward to opening my eyes again in a couple of day so that I can see you. But until then, enjoy your blessings. Your pal, Noah.

OCT 25, 2016--A GREAT DAY BEFORE MY BIGGEST DAY

I got to meet my brother and my sisters! And what pals! I knew they loved me, but they just kept hugging and kissing me. It wasn't a good time; it was a GREAT TIME!

But the day wasn't all good. Doctor Kays called me FAT! He said, "Noah, your fat. You need to lose some weight before surgery." I replied, "What? I'm fat? How can I be fat if I'm only 5 days old?!" He said, "Noah, you're so puffy because your so full of water. How can I move your liver from your chest into your tummy; I have to make it smaller."

So what that means my friends, is that I need to lose a lot of water weight so that all of my skin is pliable and so that my organs are as small as they can be. But the problem is, whenever I lose water, my blood pressure drops. If my blood pressure drops too far, then I begin to "crash." So, I'm in a little bit of a tricky situation. I need to lose lots and lots of water without losing blood pressure. 

In any case, Dr. Kays is going to try to fix me tomorrow. It will be my BIGGEST and SCARIEST day. I really need all of my friends to be praying for me--all of my friends from Taiwan, Saudi Arabia, and the United States; all of them from Canada, Germany,  Ireland, and Spain; and all of them from Switzerland, Austria, the Ukraine, and Kazakhstan! Please let all of my friends know because little kids like me can have really bad days during and after surgery. I'll do my best, but I need your help. Your pal, Noah.

P.S. My friends, I made it easier to comment--no verification required anymore.

MOVIE DAY!

I want to say 'good morning!' to all of my friends out there. And yes, it is always a good morning whenever I wake to see my mama. After an exciting night of flirting with the 'heavenly side' two nights ago, my next 24 hours were really boring. I said, 'Mama, wanna do something. How about we watch some tv?' 'No.' she said, 'No TV for you. Let's make a movie instead!' So to all of my friends out there, I would like to share a movie with you titled, Tiny Hero. I would also like to share two very short home videos of me. Tiny Hero is newly-released; its about my hospital and shows some of my CDH sisters and brothers-in-arms. If you have friends too, please share Tiny Hero with them. As a bonus, it stars my most favortist actor and actress: Dr. Kays and my nurse, Joy Perkins!

To watch Tiny Hero click: HERE

And just below the line are my two home videos.
Note: The Home videos do not appear if you running Internet Explorer 10 (Chrome, IE 11, and Edge work).

 

Fun Times For Me, Not For My Friends

Dr. Kays was right, the second day was a  roller coaster. Most of the day I was doing just fine, but then, about my bed time, things went absolutely crazy. My oxygen levels plummeted, as did my blood pressure. I would stabilize, then destabilize. My heart beat took off like a rocket, and I couldn't breathe very well. My chest was rising and falling like I was sprinting a marathon, but it was a race that I just couldn't win.

So, I got to try nitric oxide, which was kinda neat. And then, all of a sudden, I had seven of my friends in the room helping me! Dr. Kays was telling everyone what to do, and then he'd just stand still and think. Think, think, think, he did until finally he would adjust this knob or that knob or tell someone what to do. My good friends and my parents hung out with me for the entire night. In fact, Dr. Kays was such a good friend that he slept beside me until morning. What a guy! I'm pretty sure that everyone's hearts were racing as fast as mine, but in the end my heart and lungs finally relaxed and so did theirs; the sun rose over me, and I was able to live one more day. And what a day it was. And now, I'll try to enjoy yet another day. To my good friends out there, I do hope that you can do the same.

Hello to all of my friends out there. I spoke with my doctor today, and he told me that the next 24 hours are going to be very critical. Apparently, I'll really find out how well my lungs are oxygenating.  Yesterday was the 'honey-moon period.' Now the real test begins. I'll also find out how my other organs are working together. Everything will be changing from one hour to the next. I'm on a ventilator now, but if things go really poorly, then I may end up on a heart and lung machine. I'm tired of the tubes, so I'd like to avoid that if possible, but otherwise I'm going to have a great day with my mom! You should have a great day too!

Good Morning

"Good Day!" to all of my friends. How was your day today. Mine was great. I got to be alive all day today, so that's a good thing I suppose. It started fantastic because my dad got to deliver me! I'm glad he can catch. However, after the first 10 seconds of being born, things went down hill pretty fast. First, I couldn't breath. Then, I was surrounded by these weird creatures with blue hats and blue faces--lots of them. Can you say 'aliens.' I think so. And then, one of the blue people stuck a tube down my throat, and then a second one into my tummy. And then, a different blue person drove two more tubes into my belly button. I was getting a little irritated until my mom told me that the blue people are actually trying to help me. Hmmm? I have to say that I liked my mom's tummy better than the blue people. In the end, I lived my first day, so I can't complain. I had one close call, but was able to pull out of it.

October 21, 2016 - I'm Alive And One Day Old!

I want to say 'hello' to all of my friends. I am so excited to already have so many friends! I have been born now for only one day, and my mom tells me that I already have over 1500 friends, and some from Europe and even Saudi Arabia. That's a lot more than my dad, who has been alive for 37 more years than me and only has two! I want to thank all of you for your prayers. I needed them. It was a big day being born. I'll tell you more about it in my other posts above.

October 17, 2016: My Family And My Hospital

That’s my family standing in front of the hospital; they’ll be helping me out. My dad’s name is Daniel; my mom’s name is Shannon; the girl on the left is my sister, McKenna; in the middle with me, is my older brother, Lincoln; my older sister on the right, Johanna, is wearing the yellow shirt. My birthday will be on October 20th! Don't forget to pray, and I won't forget to breathe.