Ethan Nathaniel Arend
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Diagnosis: Bilateral Vocal Cord Paralysis, Anterior Tracheal Stenosis, Supra Stomal Granulation Tissue
The story of Ethan's life was written, in part, for me to deal with many emotions that I had been too preoccupied to deal with, as many major life changes were simultaneously bombarding my husband and me. More so than venting on my part, I hope that his story will help someone else that is new to all of "this" to understand that other people feel overwhelmed. As with all things, time has a way of easing the pain and the frustration. As each small hill is conquered, one builds up the courage and the attitude that even Everest is doable. Anything and everything for those we love, right? It can be done.
Teresa, Ethan's mommy
March 2004
March 5th was a brisk, windy day. My husband, Brian, and I drove anxiously, excitedly, nervously to the hospital. Today was the day. Our first baby, a little boy, was going to enter the world. Labor was induced at 8:30 in the morning and by 1:05 in the afternoon Ethan arrived. But, unlike we had discussed with our OB, Ethan was not placed directly on my tummy. He was swept away to a corner of the room to a little warmer. Something was wrong. What was that squeaking? A team from the NICU was called and arrived within a minute's time. That was fast…must be serious. Before sweeping him off to the unit, they brought him over for me to see and to hold…for only a few seconds. Brian didn't even get to hold him.
And so it began…our crash course in medical terminology. The squeak was called stridor. He also had a pneumothorax, a small hole in one lung, and severe retractions. No one could tell us why this was happening to our sweet, little baby. Only that he couldn't continue to breathe on his own. By the next day he had been intubated. An MRI was done, but because it was now Saturday, no one was in to read the film. Ethan fought to survive; we fought to stay sane. Waiting for 3 days to hear whether or not our baby had a brain tumor, we finally got the results from the MRI. Everything looked clear.
A scope was done. They suspected Ethan's vocal cords were not moving. Who knew you needed your vocal cords to breathe? Apparently their movement is vital to more than just sound production. Vocal cord movement is vital to life. The doctors could not say for certain, but prepared us for the possibility that Ethan may need a trach. After 6 days in Toledo Hospital (Ohio), Ethan was transferred to Ann Arbor, Michigan for a second opinion. On his tenth day of life, a tracheostomy was performed. Indeed, he had bilateral vocal cord paralysis. His cords were adducted (closed).
Ethan just a few hours after surgery.
One of the most difficult things for
a mother to see!
Over the course of the rest of his hospital stay, one dream after another that I had for my baby was being shattered. "You won't be able to go anywhere with him." "Keep him away from other people." No trips to the zoo…no trips to the art museum…no trips home to see our families. Would he ever be able to play in the sand or to splash in a pool? Instead of lulling him to sleep with lullabies, Ethan would learn to fall asleep to the loud hum of a compressor. Poor baby. This is not what I wanted for you!
I can't say at which point I stopped feeling sorry for all the "can'ts" and realized that this trach tube, this awful compressor, this antiquated suction machine were all keeping my baby alive! I would be lying if I said that I still don't wallow for brief moments on what I wanted for him…but it surely beats the alternative of not having our precious little gift here at all. Brian and I both started to realize that God's plan was not for us to question. As Ethan's life unfolds, this will all make sense! Our job was to work around the obstacles and to adapt Ethan's environment so that he could be a "normal" baby. When the time comes, we will find a way for him to play in the sand and we will find a way for him to splash in a pool!
June 15, 2004
We have since moved to Plymouth, Indiana. Ethan had a check-up in Ann Arbor today. Try as we might not to get our hopes up…we were crushed to hear that no improvement was noted. We were angry at the doctor for giving us the bad news, angry at ourselves for getting our hopes up, and sad for Ethan all over again. We recovered much faster the second time around. Although it was the same bad news all over, we were growing accustomed to "dealing" with the trach. I think we had been hoping that it would all go away. Now evident that this situation would not be behind us any time soon, we realized the importance of learning the terminology needed to ask educated questions and to advocate for Ethan's care.
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| Waiting for the doctor to trach changed! |
I usually don’t mind getting my trach changed! |
It was at this point that I became a part of the Trachties list serve. So many wonderful people with a wealth of information that they willingly share with others! They are my "go-to" team. I may not have survived at times without them! It is through them that we found Dr. Robin Cotton in Cincinnati. Ethan will be visiting Dr. Cotton for the first time in September.
July 2004
There comes a time when you realize that, trach or no trach, this is a baby and he can't be locked up in the house all day, albeit per nurse's instructions. Although over-nighters are a bit difficult with all of the equipment that is involved, we have come to appreciate day trips with Ethan.
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| 1st boat ride with Dad |
My cousins Megan and Olivia, teaching me to crawl |
Riding around the farm with Mom and Grandpa |
August 2004
I went in to check on Ethan during a nap and found him face down, quiet and still. My heart sank! How could he possibly breathe on his belly? Whew! No need to worry! He could breathe just fine!
At five months old, Ethan has begun to roll all over in his crib. I think we end up misting his back more often than his trach! If we're not misting his back, it is only because he gets so tangled up in his tubing that the tracheostomy mask can't move!
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| Note the strategic placement of the mask! |
Around his neck, pinning down his arm… anywhere and everywhere! |
“I don’t see what the big deal is! I don’t mind this one bit!" |
Ethan has started to make an "ahhh" sound. Sometimes it sounds like a kitten meowing. We think it is due to air escaping around the trach tube and going through his upper airway.
September 10, 2004
Dr. Daines from pulmonary and Dr. Cotton from ENT did separate scopes on Ethan today. Not only are his cords not moving, but they discovered he has anterior tracheal stenosis (narrowing), supra stomal granulation tissue (scar tissue above the stoma) and scar tissue in his lungs. Yikes! More news than we planned to hear today! We were assured that all is "fixable" when the time comes. Ethan is in the best of hands here with Dr. Daines and Dr. Cotton. His next appointment will be in January. Ethan got a Passy-Muir valve while in Cinci. Because his cords are adducted, they had to drill two holes into the side to release some of the pressure. However, with his vocal cords in the closed position, he is able to nurse and has been eating solids for over a month. He is less likely to aspirate with closed vocal cords. There's always a bright side to things, isn't there?
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| Waiting for the doctor to do a flexible scope. |
Rough day for me and Mommy |
Happy with a full belly and my Passy-Muir in place! |
October 2004
In keeping with the "being a normal baby" thing, Ethan helped Mommy and Daddy play in the…urrr…rake up the leaves! He is now sitting with ease and is beginning to commando crawl from place to place. He is still only making the "ahhh" sound, with or without the Passy-Muir.
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December 2004
Ethan continues making his "ahhh!"
sound with minor variations in tone and pitch. He has learned how to sign "more"
and is especially diligent in using it when it comes to food!
Although Ethan was not entirely impressed with the lights and trees and other
decorations of Christmas, he did enjoy showing off to family and friends his new
teeth, his prowess at crawling here and there and his ability to pull himself up
to furniture. Gradually, the trach in and of itself is becoming a non-issue.
Truthfully, it is just such a part of him and caring for it is so ingrained into
our day that we don't even see it anymore when we look at him. There was a time
when we felt so overwhelmed that I would never have imagined this "freedom"
would be possible!
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Mom and Dad got a bigger
kick out of my 1st Christmas than I
did. Don't even get me started on all the silly pictures Mom took!
January 2005
Ethan's second visit to Cincinnati Children's was this month. We waited
restlessly, anticipating that we would hear more unexpected (and bad!) news
as we had at our last visit. Miraculously, however, Ethan's lungs are clear!
All of the inflammation and scarring seems to be gone! We will breathe a
little easier tonight (note the irony in that cliché!) His vocal cords are
still not showing any signs of movement, but that doesn't seem to hold him
back from learning to communicate. At 10 months old, Ethan knows 3 signs and
will gladly point at things around him to get his point across. He loves to
give Daddy high-5's (10, 15, 20…just keeps going!) and has the most adorable
3-toothed grin!
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| Looking forward to seeing the doctors today! |
Got to eat at the Hofbrau House with my Uncle Bob, Cousins Olivia and Dylan and Gma and Gpa, Mom and Dad - my first taste of authentic German cuisine! |
March 2005
Yoda (look close!) and the Very Hungry Caterpillar say, "Happy 1st birthday, Ethan!" Chow down, Baby!
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April 2005
Ethan has started to say "ma-ma." (OK, it usually comes out closer to "ama-ama," but I'll take it!) He uses a lot of vowel sounds and changes his pitch, tone and volume. Much to our initial chagrin, he enjoys sticking his finger in his trach! The occlusion forces air into his upper airway, making it sound as though he is choking. Believe me when I say that Mommy and Daddy did not find it quite as hilarious the first few times as Ethan did! He does seem to enjoy the sensation, though. After adjusting ourselves to the fact that this is simply a sound that our baby makes (instead of a gurgle or laugh), we have begun to encourage him to do this. His toleration of air in his upper airway now will only make the decannulation (removal of the trach) process easier whenever that day arrives!
By the way, I have been asked often, "Can he laugh?" YES! He laughs all of the time. Of course, Brian and I have come to gauge his laughter (as well as crying) in the sound of his secretions moving up and down in his trach tube. Others may not hear it unless they also see his expression that accompanies the sentiment, but we have learned to distinguish a laugh from a cry just by the variation in secretions.
May 2005
A year ago the weight of the universe seemed to be burgeoning on our shoulders. Yet, month by month, Ethan has grown, learned and laughed enough to eradicate the stresses of life little by little. He never ceases to amaze us. He just recently started to walk and enjoys going outside to pick flowers (one of his favorite words to sign). He will create little bouquets in his hands with flowers, mulch and twigs that he collects from the yard and proudly carries his bouquet around the house until the flowers are drooping or falling from their stems and the mulch marks his path on the carpet.
At 14 months old, Ethan knows 40-some signs and is drinking in the world around him. Although some of his equipment will continue to be a nuisance (beeping alarms in the middle of the night to alert us to too much humidity, not enough humidity, blah, blah, blah) and, well, insurance (enough said, I presume?), one look into those baby blues and the world dissipates until nothing is left but love and hope wrapped up into one little baby that goes by the name of Ethan Nathaniel.
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"And from our fringed tulip collection…" |
So this is love? What a Daddy! |
Humm…should I eat it or give it to Mommy? |
July 2005
Ethan visited Cincinnati Children's just a few days ago for both a flexible and
rigid scope. Although it was difficult to see them put him to sleep the first
time that we went (September '04), it gets easier every time.
I appreciate being able to hold him right up until the time
that he is wheeled into surgery. We look deep into one another's eyes as he
drifts off, crying. It is as though he is pleading for food (at this point
he hasn't eaten since the previous day) and I am trying to channel every
last bit of love and comfort into his little body before laying him on the
OR table and kissing his lips good-bye. The memory, though not old, is
almost hazy-as though my protective barrier had gone up the moment I turned
to walk away from him. I vaguely remember it seeming as though he was being
swarmed by nurses, doctors, anesthesiologists, and their residents. My poor
baby being thrown to the wolves…OK…maybe that's a little melodramatic!
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Ethan's support crew…trying to keep him happy before his procedures. |
No toys! I just want FOOD! |
The good news…Ethan came out of the anesthesia much easier this time around. The doctors reported that his vocal cords have no sign of motion. His lungs still appear to be healthy, though. A "wash" of his lungs will be back from the lab in a few days and will tell us more. Some concerns have arisen based on observations of him coughing while drinking. Ethan refused both bottles and sippies and went straight for a cup! Now, however, we will be going back to Cincinnati for a swallow study to find out if he is handling the cup as well as we had thought! The concern is that he may be aspirating fluid ("going down the wrong pipe" into his lungs). Once we get the results, we can begin more serious discussions about which surgical strategies are best for Ethan's vocal cords and collapsed trachea and how soon we should get started!
In the meantime, Ethan does not even realize that life should be any other way! He enjoys weekly dips in his turtle pool (sometimes he jumps in shoes and all!) and investigating the plants in our yard. He even has his own watering can with which he keeps the flowers on our front steps thriving! Despite a few cranky moments caused by 3 simultaneously erupting teeth, Ethan is a delight and just such a tender little man. He freely gives hugs and kisses - we don't even have to ask! Currently he has a signing vocabulary of 90+ words. It is not unusual for him to start signing a new word every day or two. That sure keeps Brian and me on our toes, but more importantly, it allows Ethan to express himself (perhaps even better than if he had been vocal!).
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| Did I say he waters the flowers? |
Ethan's sign for 'cold.' He
shakes 2 pointed fingers in the air. |
We know that friends and family members have felt sad for us and "our situation," at various points throughout all of this. I suppose that I can understand their concerns. In the beginning, everything about Ethan was overwhelming. Despite the fact that he was our first baby - we had to learn so much, medically speaking, in order to take care of him and to prevent more serious problems from occurring. I am a little embarrassed to say, though, that now that discussions are beginning about having his trach removed, the thought saddens me in a strange way that is difficult to explain. I suppose that it boils down to the fact that the trach is such a part of Ethan that we don't even see it when we look at him. Trach and all -- this is our life! For the past 16 months, this has been our "normal." Some babies need suctioned with a bulb syringe; ours needs a suction machine. Other babies fall asleep to gentle lullabies; ours falls asleep to the hum of a compressor. Ethan is our amazing Baby Man and he is the sweet, little joy that he is due to all that life has dealt thus far. So if you think, even for a second, of feeling sorry for him - wipe that tear. Rejoice in the invisible force (in all of our lives) that plays the cards we can not see, sometimes before we even know we have entered the game!
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"Ain't life grand!"
Teresa Arend, Ethan's mommy
