NOV 24, 2016--Alive and Free! Noah Abner's Last Blog Post

Don't be fooled; I still need my O2

Good morning to all of my friends out there! I sincerely cannot believe how quickly this day has arrived--or that it even arrived at all. Do you know what day it is? It's the day that I get to go home with my family!!!

Most physicians prognosticate very poor outcomes for babies like me. Indeed, it was only thirty-five days ago that I was thankful to have lived just one single day outside my mother's womb. Now look at me! It looks like nothing was ever wrong! Can you believe that I was born with only 9% of my right lung and with over 60% of my liver in my chest! Unless I am mistaken, I am the fastest-recovered right-sided CDH survivor ever to have been under the care of Dr. Kays and his nurses. In fact, I originally anticipated (assuming my survival), that I would have lived in my hospital twice as long as was actually required of me!

As all of us know, no one is ever guaranteed tomorrow. And so, I must first thank God for the initial nine wonderful months I spent in my mama's tummy. And although many of my subsequent post-birth days have been difficult, I am grateful for every single one of them. I do hope that I can live many more.

I am also grateful for Dr. Kays, his wife, and for Joy Perkins. Along with the Hand of God, it was their long hours, effort, and sacrifice which gave me a fighting chance to survive. What's more, I should note the exceptionally large and dedicated team who relentlessly cared for me and who worked alongside and under Dr. Kays. The many outstanding physicians included doctors Schwarz, Stone, Snyder, Bubby, Parker, Malik, Long, Alexander, Elkhidir, and Hickock.

And I cannot thank enough the nurses who cared for me twenty-four hours a day: Dana, Paul, Kayla, Rachel, Laura, Aimee, Christin, Linda, Nicole, Emily, Meagan, Tammy, Mary, Julie, Meredith, Andrea, Callie (delivery nurse), Chad, Joe, Beth, Erin, Anna, Carrie, June, Liz, Terry, Barb, Tara, Tassa, John, Ed, Sonya, and Clarice. I would also like to thank Rebecca (echo-cardio), Shannon (sonography), Scott (Respiratory), Shane (Respiratory), Victoria (Respiratory), Galina (Respiratory), Tracy (Respiratory), Janet (PT), Anna-Maria (PT), Patricia (lactation), Christie (lactation), Loren (community), Stacy (neonatology), Pam (discharge), the dietary staff, and the lovely Barbara who cheerfully cleaned my room every day!

I would be remiss if I did not thank my grandparents and my Aunt Jo who came to help out my folks so that they could be with me night and day.

Please do forgive me if I have forgotten your name. There were so many who participated in this team effort that even a fresh brain like mine has difficulty remembering them all.

Lastly, I would like to thank all of my friends from around the world. In this short time, I have made friends on every continent (except Antarctica) in over 20 different countries. With well over 18,000 individual page views on my blog, I can only imagine the number of people who were rooting and praying for me. Who would've thought that someone like me would make so many friends in so little time. I do hope that perhaps one day, I will be able to meet every single one of you.

That being said, I must admit to one piece of unfortunate information: because my lungs are still small, I remain pulmonarily challenged. What that means is that smoking or sicknesses like the common cold, a cough, the sniffles, or the flu can severely hurt me. Did you know that it is possible that a cold could cause my readmittance into my hospital for a very long time? Believe it or not, it is true. So even though I want to meet every one of you as soon as possible, if you or anyone in your household has been ill within a 48-hour period preceding a potential encounter with me, please let me know so that we can reschedule our visit. I won't be offended at all. And also, if you or anyone in your household has been sick, please refrain from visiting my home until the illness has passed for at least 48 hours. My parents and I sincerely apologize in advance for this inconvenience. If it can be helped, I would like to stay out of my hospital for a very long time. Fortunately, such strict visitation requirements will diminish with each passing month and will probably cease altogether after the end of my second year.

On a more positive note, I cannot thank all of you enough for being so encouraging and faithful during this time. Going through difficult times is never easy, but it is much more tolerable - and even at sometimes enjoyable - when good friends walk with you.


May God bless you and keep you; May He make His face shine upon you and be gracious to you; May the Lord lift his countenance upon you, and give you peace.



To all my friends out there, this is my final blog-post. I am sad that it has come to an end, but I am happy that it has ended with such good news! Today in America, we are celebrating our Thanksgiving Holiday. Know that today I am, and for the past thirty-five days of my life I have been, thankful for you all.

Stay thankful my friends! Life is too short not to be. This is your CDH pal, Noah Abner, signing off.

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.

NOV 22, 2016--Tired, Tired, Tired

Good morning to all of my friends, especially to my new ones from the great countries of Turkey & Chile. No seriously, that was neither a food pun nor planned for the week of American Thanksgiving. I really do have two new friends from those countries.

In any case, it looks like after thirty-two days I have finally broken my parents' will. And who can blame them? They have been by my side for 24 hours a day since I was born. Its not that I make things helpful--I'm always taking medicine; my spaceship bed beeps all of the time; I want to eat and then not eat; I then spit up and then need to eat more; and I seem to always need an x-ray or other kind of test. For the last thirty-two days I have tried and tried to train them to sleep throughout the day with me, and it finally looks like I've accomplished my objective!!!

So, if you see my parents soon and they seem a bit cranky from infantile-induced sleep deprivation, please know that its all my fault. Sleep well my friends. Your CDH pal, Noah Abner.

P.S. There may be a big announcement on Thanksgiving Day!

NOV 20, 2016--New and Blue Ride

Good morning and good news to all of my friends!!! Because I've been doing so well, my nurses decided to loan me the hospital's 'new and blue ride.' With it, I can tow my pump tower, my oxygen tank, and even my mom. She follows me wherever I go.

If truth be told, the stroller is not the most stylish: it looks like the progeny of a shopping cart and a lawnmower (yes, babies like me know how to use the word 'progeny.' What do you think we are?). I actually don't mind the look of my new ride. You know why? Because it gets me to where I need to go--which, generally speaking, is back to my bed. All joking aside, and from what I can tell, it looks to be a whole big world out there. I'm looking forward to seeing all of it! I do hope that you can do the same. Please stay in touch, and ride well my friends! Your CDH pal, Noah Abner.

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.

NOV 16, 2016--Weight Training

Good morning to all of my friends! I never thought that it would happen, but I actually have made a new friend who lives in Australia: "g'day mate! I hope to meet you some day." But now to the sour news: when I first arrived at my hospital, Dr. Kays said that I was fat, but now he tells he says that I'm too skinny! He said "Noah, listen to me. Before you leave this place, I want you looking like the Gerber baby. Got it!?" I said, "What?!" "You know," Dr. Kays continued, "the picture of the fat Gerber baby printed on all the overly-expensive baby food jars. That's how I want you to look." I then said, "Dr. Kays, that is a fictional and idealistic image propagated by the 'Hollywood culture,' an image that is both unreachable and one that causes unnecessary angst among the common baby."

Dr. Kays neither appreciated that response, nor did I get very far with it. You know what he said. This is what he said: "suck up the pain kid and suck down the milk." My response after that: "Yes sir."

So, here is my initial dietary challenge: I need to eat 15 milliliters every 3 hours, which equates to 120 milliliters over a 24 hour period. Okey dokey, I'm pretty sure that I can make that happen. But here is the rub: I need to quickly get my "feeds" up to 60 milliliters every 3 hours. That equates to 480 milliliters over a 24 hour period! For those Americans that are metrically challenged, 480 milliliters equals 480 grams. I know what you're thinking: "four-hundred-eighty grams, how hard can it be?" Well, riddle me this: can you eat 20% of your body weight every day? I didn't think so. If you did, then it would be you who would be looking like the Gerber baby. But I guess, we each have to do what we each have to do--and for me, that means eating around the clock. Indeed, I've gotten to the point where I have learned how to eat even while sleeping (see right image).

Well my friends, I best be off. I have another meal to eat: bon appétit. Your CDH Pal, Noah Abner

NOV 13, 2016--BLUE NIPPLES

Good Morning to all of my friends! I have a confession to make: I'm a little self-conscious about my eyes. You wanna know why? Because they take up about 20% of my face! If my lungs were just one-half the size of my eyes, I think that I could have jumped ship about two weeks ago. My mom says that she loves me for "who I am." But we've all heard that before. Its code for, "the baby next door is cuter!" Oh well, I suppose that nobody is perfect and that I should be grateful for what I've got.

But what about this blue thing that the nurses call a nipple? I have no idea what they are thinking?! It doesn't work at all. I suck and I suck and what reward do I get for it: absolutely nothing. I know that I may look a little slow, but I no one thing: it ain't real. How am I going to argue though? I can't even talk. So what do I do? I suck on it anyways. For whatever reason, my sucking on a fake nipple makes my nurses and my parents feel like they've accomplished something. Big people are funny that way.

But in all seriousness, I did recently check on my right lung. From what I could tell, its about one-third the size of normal. I'll soon try to post an x-ray picture for those that are radiologically savvy. Dr. Kays and I would definitely like to grow it bigger before I leave. Hence my fake-nipple-sucking regimen. The rumor on the street is that they're training me up for the "real deal." Because I now know how to breathe, I now need to learn how to grow. For me to learn how to grow, I need to learn how to eat (I get it, not knowing how to eat is a peculiar problem). So, I guess in the end, it all makes sense: I have to suck on a fake nipple. I suppose that sometimes life requires that we all have to. Your CDH pal, Noah Abner.

NOV 12, 2016--Graduation Day

Good Morning to all of my friends! Today is my 23rd day of life, a day for which I am very grateful. Do you want to know why? Because it is the day that Dr. Kays finally told my mom and my dad that I will most assuredly survive! Even though I have put on a "good face," there were some not-so-fun times, and a couple of "white knuckle" moments. But I did my best; Dr. Kays did his best; my nurses did their best; and you prayed your best.

 

Because I can now look forward to enjoying a future with my mom and my dad, my siblings, and all of my friends, I am inspired to work even harder. If I keep it up, I may set the record for the fastest-improved right-sided CDH baby to have ever been under the care of Dr. Kays. 'Phase One,' as Dr. Kays likes to call it, is over--that phase required that I simply survive. I have now graduated to 'Phase Two:' learning how to thrive. That means that respiratory training and eating without throwing up are on the agenda. And if all goes well, I may have to move out of my hospital in as soon as three weeks!!!

 

For those unfamiliar with the grave nature of congenital diaphragmatic hernia, this is truly a big day. Although my progress may have looked effortless and easy, at least one-half of babies like me eventually die. However, because of my most favortist doctor, Dr. Kays, and my most favortist nurses, and my most favortist hospital, and my most favortist friends, I will live to my 24th day and beyond.

 

Notwithstanding today's good news, I would like all of you to know, that had things turned out differently, I would still be extraordinarily grateful for all of your effort, your prayer, and your support. I do hope that I can be as good a friend to you as you have been to me.

 

Some day, I hope to meet every single one of you. "May the Lord bless you and keep you; May the Lord make His face shine upon you, and be gracious to you; May the Lord lift up His countenance upon you, and give you peace.” Your Pal, Noah Abner.

P.S. I will continue to blog my adventure until the day that I am released from the hospital. Stay tuned!

NOV 11, 2016--Coach Mom

Good afternoon to all of my friends. I would like to welcome my newest friend from Iceland: velkomið! Well, in my short life, I've discovered that proficiency builds confidence in one's self. And thus, although I cannot breathe to save my life, i've mastered the skill of expectoration--i.e., throwing up. Its a skill used not only by college students of the half-witted type but also by CDH babies. In some babies, they expectorate so much that another surgery is required. I told Dr. Kays that I would like to avoid that. He's pretty good at taking recommendation from babies, so he said that avoiding surgery would be our current modus operandi. I have a mucho grande upudate tomorrow, so stay tuned! Your CDH Pal, Noah Abner.

Below are two videos of my mom trying to get me to breathe slowly.

P.S. Internet Explorer 10 or older will not play the home videos.

NOV 9, 2016--Speed Breathing

Good Afternoon! I do hope that all of my friends are enjoying their days today. I am doing my best to enjoy mine. Well, many of my friends have been asking me for a medical update. We babies don't know too much about medicine, but I'll do my best to give you the "skinny."

I'm continuing to improve, albeit very slowly. My pressures have more or less stabilized, so I told Dr. Kays to stop my Dopamine and my Hydrocortisone. However, I did become a bit of a drug addict, so I'm still on a little Fentanyl--not very much though. I think I'll be able to kick the habit in a day or two. I do need to confess that I am doping (yes, like Lance Armstrong) in order to keep my red blood cell count up. Like Lance, we do what we need to do in order to win! My precedex has been reduced some--its a bit of a sedative, pain killer, and anxiety drug. I'm not as nervous about life as I used to be, so I imagine that Dr. Kays is going to cut me loose from the precedex soon.

The thing that I just cannot seem to figure out, however, is breathing. Here is a quiz for you: which of the following animals have a faster resting respiratory rate than me: (a) a bunny; (b) a newborn foal; or (c) a cat? If you answered with "none of the above," you would be correct. A bunny's rate is about 45, a newborn foal's is about 80, and a cat's is about 60. The screenshot above shows my resting respiratory rate at about 120! That was three days ago. My rate is getting a little better every day, and it has been down into the 60s, but it hangs out a lot in the 80s.

And it better continue to improve. You know why? Because if it doesn't, Dr. Kays will spear my chest cavity with a long needle in order to take fluid out of it! How is that for motivation?! For being a doctor, he sure has peculiar methods for helping us babies out.

My friends, that is the quick-and-dirty update. Just remember, always do your best. Otherwise, you may get stabbed by that proverbial needle. Your pal, Noah Abner.

NOV 8, 2016--Happy Hat Day

Good Morning to all of my friends!! In my very short life I have already been blessed with hundreds of friends in over fifteen different countries, including friends from eastern and western Europe, the Middle East, and even the Far East. Life is tough as a CDH baby, and in order to finish the race, you need a good team. That team includes not only doctors and nurses, but friends as well. Sometimes a pat on the back or a pick-me-up is as helpful as a good dose of medicine. Every one of you has been an exceptional partner, but today I would like to specifically pay special attention to eight of my friends.

Here at my hospital, I have nearly one-hundred baby-friends that are having a difficult start to their lives. As we all know, we come into this world looking very very naked. Hospitals do their best to dress babies, but it is simply not their forte. Hospital clothes are like hospital food: borrrrrring. At least, that is what all the girl babies tell me.

Knowing this, my aunt extraordinaire--my Aunt Beth--organized seven of her knitting comrades and crafted several blankets and well over one-hundred hats for my friends here at John's Hopkins All Children's Hospital. So before I go today, I would like to thank my following friends: Aunt Beth from Ohio; Heather Price from Michigan; Kathryn Nichols from Minnesota; Ms. Ahlgren from Missouri; the Coogans from Maryland; Linda Fosdick from Virgina; Sarah Zyla from California; and Ms. Nicole Harres from Colorado.

"Its good to be naked, but its better to be naked with a hat on," so said every baby in a hospital. Stay warm my friends. Your CDH pal, Noah Abner.

P.S. I'll give a much-needed medical update tomorrow.
P.S.S. My dad refused to put my hat on because he didn't want to break Rule #1: don't wake a sleeping baby.

NOVE 6, 2016--Naomi's DAy

Good morning! I think that today is both a happy day and a sad day for me. My mom and my dad originally told me that I had two big sisters and one big brother--a nice big family, right? But today, I was excited to learn that it was even bigger--bigger because I have yet another sister! Her name was--no no--her name is Naomi. You see, my mom told me that something really bad happened to Naomi. She told me that I unfortunately could not meet her. She said that Naomi died exactly one year ago--on her due date of November 6.

 

My mom said that she doesn't really know why my sister died. She said that really bad things just happen sometimes. Even my dad doesn't know why. But my mom did tell me that although Naomi died, she was still thankful for the nine months that she and my dad and my brothers and sisters got to spend with her. She told me that Naomi was even a lot like me: that we moved and squirmed the same when we were in my mom's tummy; that we kinda look the same; and that our names even start with the same letter. I am beginning to think that even though I never got to meet Naomi, I am still going to miss her.

 

I hear that saying "good-bye" to a baby is a really hard thing to do. I certainly don't want to say good-bye to my mom and dad yet. Unfortunately, a number of us CDH babies have to say "good-bye" way too early. Many of my CDH friends live, but just as many of them die--and sometimes, like with Naomi, nobody quite knows the reason. But did you know that many more of my CDH friends could live--and you wanna know why? Because of the best CDH doctor and staff in the world--my doctor, Dr. Kays, and my nurses. At most hospitals (even at many of the best hospitals in the world), babies as sick as me survive less than 50% of the time, and those that do survive often have a really hard time for many years.

 

But at my hospital, with Dr. Kays and his nurses, babies as sick as me survive over 90% of the time! Did you hear that--over 90% of the time! And not only do we survive, we do pretty well too. The truth and the tragedy of this whole story is simply that the news about my doctor and my nurses has yet to get out. So, if you know someone who has a baby like me, please tell them about Dr. Kays and his nurses so that they don't have to--like my mom and dad had to with my sister--say "good-bye" too soon. Your pal, Noah Abner.

P.S. If you would like to learn more about Naomi's good-bye, you can click the italicized link to the right: Naomi's Good-bye

P.S.S. please be patient after clicking the link. The link takes about 20 seconds to load.

NOV 5, 2016--Just Ridiculous!

Good morning to all of my friends out there. I would like to begin this morning by warmly welcoming several of my new friends from France: bienvenue.

But now, let's get to the point: sometimes, you just look and feel ridiculous, don't you!!! Along with keeping me alive, the hospital has many perks: the nurses, my spaceship bed, the ocean view. However, what you see here is simply not one of them. I know Dr. Kays is a great doctor, but I don't think that he is much of a plastic surgeon. Just look at my big green nose. Flattering? I don't think so. Even Gonzo sports a smaller schnoz than me. And my hat? Since when do babies wear skull caps?

I blame my parents for this, especially my dad--he gets all snappy with the camera on my down days. In fact, all the parents do. I have about ninety baby friends on my floor and the floor upstairs, and we all suffer through these daily shenanigans. Its political season, right? I'm beginning to think that the only thing which can combat this type of humiliation is the formation of a baby union, or even better yet, perhaps a baby revolution--Viva La bébé Revolucion!  Now, if I could only learn to walk, much less breathe.

Well, I best be off. But please remember this my friends: if you think that you are having a bad day, at least you don't look like this! We'll be in touch. Your pal, Noah Abner.

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.

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.

Nov 2, 2016--Boys and Their Toys

Good Morning to my friends yet again!!! I first must apologize for my false advertising: as of this writing, I still have a straw down my throat. Perhaps I'll have it removed this afternoon. From minute to minute I don't really know what is going to happen until it is already happening. The nurses and doctors tell my parents everything, but they don't tell me anything.

So, in the mean time, and being that the news cycle is slow, I figured that I would show off some of my toys. Now, I know that my room looks to be a bit of a mess, but I know exactly where everything is. How many parents have heard that before? My ventilator is on the lower right. It pushes however many breaths I may need, but if I want, I can breathe on my own at the same time. It also gives me some pure oxygen--delicious. On the left are my micro-pumps. Right now, I'm running eight pumps. I have absolutely no idea what's in them. Hey, do you read the ingredients printed on that microwave meal package? I didn't think so. The TV in the upper right tells my nurses whether my head and kidneys are sufficiently saturated. The roof above me regulates my temperature, and the TV in the upper center tells my nurses my blood saturation levels and my blood pressure.

I'm still doing my best. They gave me some fluid and blood yesterday because my blood pressure has been persistently low, which wigs my parents out. I don't know why my pressure is low. It is a bit of a mystery. Unlike my parents, I guess that I am just a pretty relaxed guy. I suppose its never a good thing to be too stressed anyway--I think that I need to remind my parents of that. That being said, I do hope that you can have a relaxing day too.

In any case, I will definitely be in touch. Your CDH pal, Noah.

NOV 1, 2016--Nether Region Straw Removal Day!

Good Morning to all of my friends! Today is an especially good morning for me. As you may notice, I do not look terribly happy in the very unflattering photograph to the left but look much happier in the one on the right. What is the difference? The left photograph = catheter insertion and the right photograph = yesterday's catheter removal. Although I have the nicest and most beautiful nurses in the whole wide world, the straws that they insert into my nether regions are just not that small. Many-a-CDH-baby can sympathize with the relief that comes with straw-removal days.

But what is even more exciting, at least for me, is that I may get another straw removed tomorrow--my throat straw! That particular straw is what helps me to breathe. Dr. Kays tells me that I probably don't need it anymore. My mum and dad are a bit nervous to see if I can already breathe on my own, but Dr. Kays thinks that I am progressing super fast! Things change on a hourly/daily basis in the world of CDH, but tomorrow looks to be the day when my lungs may meet the world!

I would like to thank all of my friends for their prayers and continued support. I would not have been able to make it this far without you. I would also like to thank my newest friend, who believe it or not, is also named Noah Abner. Stay tuned for the big reveal tomorrow. Your CDH pal, Noah.

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).