Laryngo-ma-what?

I had the perfect pregnancy. 

No nausea. No fatigue. No Pain. No waddling.

I enjoyed every minute of it. I had it ALL planned out.

Well at least I thought so.

Even when my ob-gyn suggested I get a c-section, because she thought my son would be too big for me, I wasn't phased. On April 23, 2014 I gave birth to my long awaited baby boy Aaron. He was red, puffy and wrinkly, and I loved every bit of him. He turned out to be normal sized but he did have the cord wrapped around his neck. Again, no biggie in my eyes... I was born the same way and I am just fine hehe. Before  I was even stitched up the child development nerd in me yelled out "what are his APGAR scores?" Everyone laughed, he had great scores and I spent the rest of the day bonding with my son, and trying to learn how to breastfeed as I planned to do so for the next 12 months.

Just a few hours old ❤

He wasn't even 10 hours old when I noticed something was "off" ... I didn't know what it was. I was still under the effects of Benadryl, given to me for the itching after a c-section, but even through the foggy daze he sort of looked like a fish out of water. I yelled out to my mom "get him, get him... and take him to the nurse something is WRONG!!!!" The nurse waived it off as liquid in his lungs from the c-section and returned him promptly. It took 3 days before anyone in the hospital would acknowledge that his chest and belly sunk in (retractions) every time he took a breath. Even then, they would not take him into into intensive care as "he is eating and babies that are sick don't eat" and he had good oxygen levels. Finally one nurse took him seriously and sent him to the NICU. I was discharged and had to leave my baby in a hospital over an hour away from my home. I felt as if one of my limbs was missing.

First Hospital Stay 

The small hospital did every general test (heart ultrasound, lung x-ray, blood work) they could do but found nothing other than that his difficulty breathing was positional (got worse when he laid on his left). They couldn't justify sending him off to the nearest Children's hospital as again he was eating well. After a week they told us "don't worry he might just have laryngomalacia". Hmmmm ok .... wait what? Laryngo-ma what?... "Oh just a common condition in which children have a floppy airway that collapses on itself and blocks air from coming in or out. Don't worry it is outgrown by 2 years of age. Best case scenario that is all he has"...

They said to take him home, and to follow up with an ENT. We gladly did. We were naive. We focused on the fact that laryngomalacia was common and eventually outgrown. We fell for the textbook definition that would be fed to us for the next three months. Oh how laryngomalacia is SO much more than that. BUT we wanted our little boy to go home with us more than anything. The next day the ENT reinforced what the small hospital told us after scoping him for 2 seconds. We were given no further instructions, from anyone, other than to take him to the hospital if he turned blue. And one week later, blue he turned. During. A. Feeding. In. My. Arms.
The first of many times after that actually.

Long story short we spent the next two weeks in the NICU. He had suffered an Apparent Life Threatening Event, had bacteria in his blood, a meningitis scare, test after test, poke after poke. The scope revealed he in fact had laryngomalacia, the sleep study and PH probe showed he had severely abnormal central and obstructive sleep apnea, as well as acid reflux. They decided to treat his acid reflux and see if it improved his laryngomalacia. The theory is that the acid reflux irritated his airway, swelling it closed, and causing respiratory distress. During all of this time in the hospital, my little man never once acted sick, never desaturated, never stopped eating. He was happy. And that alone held me together. He is truly a perseverant little champion. I know many adults that could not endure being in the hospital for more than an hour, cough dad cough. So... they sent us home with an apnea monitor, a nebulizer, and oxygen to be worn 24 hours a day. "Bring him back if he stops breathing or turns blue".... Oh and those damn instructions.

A week later ...
He was turning blue again. He would pause breathing even when awake. And the retractions were deeper than before. We could hear his squeaky, grunty breathing from across the apartment. So we took him back to the hospital. It was decided that after so many life threatening events he did indeed need a surgery to remove the floppy parts in his airway. A procedure that most children go home the next day. It was supposed to fix him, and not have us wait until he was 2 years old to hear him breathe regularly. I was all for it. It sounded great. I was ignorant. To be honest, yes he did come out of surgery a new baby. He was breathing extremely well. We jumped of joy! It was the miracle cure! The surgeon was a "miracle worker" - her words.

After his first surgery

Being silly - making the best of our situation!

Excited Dad brought him a mobile!

4 hours later I was getting ready to go to bed in the ever so comfortable couch that had been my bed for 1 week too many, when I looked up at his bed and noticed that the blankets were moving up and down rapidly. I uncovered him, only to see the horrible sight of your child's body sinking into the bed as he works so hard to breathe. Aaron of course was as calm as ever. He never showed distress. The nurse brought the life saving device and put it next to him, and called the PICU doctors. Within minutes we had 10 doctors in the room trying to decide if we should intubate him. I was told he probably (probably really?) had inflammation in his airway. NO. DUH. Anyways, they took him back to PICU and he was put on heliox  and high flow. He spent the next month fighting for his life between the step-down unit and the PICU. He was put on heliox, taken off heliox. Again he was poked and prodded over and over and over again. I slept like 5 hours a week max. I began to get anxiety as soon as it started to get dark, as he always had episodes at night. Rapid responses were called on him. We had 30 Doctors in the room with us once. It was horrifying. And yet we had no answers. Nobody knew why he was having so much trouble. I pushed and pushed for more tests, but they wouldn't do them and chalked it all up to laryngomalacia and inflammation. Eventually the doctors decided that he had baseline retractions and he would continue to have episodes, and that I could just bring him back if it got too bad. We packed up our things and went home.

He did well for about three days. And then we met monster number 2... Acid re-flux. Aaron had been drinking 4 ounces every 2-3 hours, and suddenly he started avoiding feeds. He would either laugh his way out of them, or he would kick his feet out, arch his back, and scream. I could not get more than one ounce down. OH and I tried, I squeezed the bottle, I tipped the bottle, I put the milk in a syringe... nothing. We decided to take him back to the hospital but this time we would take him to another Children's hospital for a second opinion. I didn't even pack much as I thought we would come home the next day. We ended up staying two more months. Aaron had stopped eating because he re-fluxed and aspirated (the food went into his lungs)every time he did eat, causing him a lot of pain. We thickened his liquids, we fed him through a tube in his nose to his stomach. Nothing helped, he was not gaining enough weight, and could not take in enough by mouth. Finally we were told our only option would be to wrap his stomach with a procedure called fundoplication so that the reflux would not reach his airway, and insert a tube/ mic-key button into his stomach so he could take in enough calories safely. This was by far one of the hardest decisions of my life, however we knew it would be the best for him and we agreed.

Before his fundoplication/g-tube surgery :(

At just 3 months old, Aaron had surgery number 3 done. We do get to feed him by mouth at times, but most of his caloric intake is through his Mic-Key button. This can be a huge pain, but to be honest it has been a blessing in disguise. The laryngomalacia has improved vastly. He has some noisy breathing, mostly when excited, but other than that his breathing is AMAZING! He has gained weight and is no longer failure to thrive. He still uses an apnea monitor at night, and has a nebulizer, but he no longer needs oxygen! All that is left now is his feeding issues. He has passed his swallow study and can take in about 2 ounces by mouth. It still isn't enough but there has been improvement. I am scared to death of the upcoming winter. I wish I could put a glass case around him and make sure he doesn't get sick - totally kidding... kinda. I just don't want to see him in the hospital EVER AGAIN.

It is amazing how much this little man has taught me in such a short period of time. He never stops smiling. He overcomes every obstacle thrown at him with a smile. He inspires me, and keeps me going. Everything else is meaningless when I look at him and how far he has come. I hope that anyone reading this (if anyone is reading still) will find hope, support, and the information they need during their own difficult times. Feel free to contact me if you have any questions. For now my biggest advice is DO NOT STAY QUIET. You are your child's voice, and your instincts are right. Request swallow studies, chest x-rays, scopes, sleep studies etc. Get to the bottom of it. I don't want to think what would have happened if I took the doctors' words for it.

All in all things have gotten better. As I have typed this blog I have relived the pain, but I have also began to appreciate where we are now. SO WHAT Aaron has a button in his belly? He doesn't mind it! Aaron is much more than a child with laryngomalacia and a feeding tube.I am so much more than a mother to a child with laryngomalacia. And so that is where this blog comes into our lives. LIFE with Mic-Key will be about LIFE and not just Mic-Key. It will discuss laryngomalacia and feeding stories but it will also discuss his growth and accomplishments, his favorite things, my obsession with all things beauty, home and cooking topics, life as a graduate student and as a homemaker. ALL that makes us US! Stay tuned :)

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