Gabe's Story

Gabe has nearly reached his first birthday.  Oh what a journey we have been on!
Heading into parenting a fourth baby; It didn’t occur to me to worry about things like diapering, eating or breathing.  Gabe’s hip dysplasia meant that my stomach turned at any tug of his leg, and we learned a new way to diaper that kept his leg and his body attached….

Breathing?  Well, I guess I always took that for granted.  Eating too.  But my baby Gabe struggled to eat and I found myself saying aloud on a regular basis… “is he breathing?”  His choking sounds during eating, between eating, and especially those that pierced the silence of the overnights, stopped my heart.  We thought it was reflux… we thought it was because of the swallowing problems… we didn’t know yet that his airway was collapsing... but we knew something was terribly wrong.

I would come to know both the agony and the relief in hearing a diagnosis.  “Surprisingly severe” laryngomalacia.  They booked the OR for the very next morning, and before we had time to catch our breath, the doctors were tackling the problem.  I looked at his little body in that PICU crib, attached to cords and tubes from head to toe… and felt a heartache like no other.  He struggled, and he was in pain, and I felt helpless.  Once again desperate.. once again numb, yet overwhelmed with emotion all at once.

That PICU stay would not be our last… there have been countless others since.  He has endured and overcome more surgery and  more illness.  I have held his body and begged to God for him to just breathe as I watched the pulse ox monitors flash.  I have watched the red lights just outside his PICU room flash and alarm.  I have held him between my legs on ambulance gurnies, being lifted into lifeflight planes with an oxygen mask over his face….  Hearing the roar of the plane and nothing at all in exactly the same moment.  I have recited his medical history to countless ER, Reg floor and PICU doctors, and to a long list of specialists… hundreds of times this year.  Slept on chairs and washed up with his wet wipes in the bathroom of his hospital room.  I have glanced inside the other PICU rooms as I walk about and caught glimpses of the other sick babies and kids taking up residence there…. Tubes, vents, cords… I have seen the parent’s faces and learned that the PICU is a complicated place.  Within those walls there is love, worry, grief, excitement, frustration, patience and impatience, joy, concern, fear, admiration, hurt and healing. 
I have never kept a pulse ox, meds, and for me a toothbrush, deodorant and an extra pair of underwear in my other kids diaper bags…. But he isn’t other kids… his journey is special… it is miraculous… it is full of twists and turns, crisis and success.  Looking back.. there has been more good than bad… and there has been good in the bad.
Gabe has earned my respect and admiration this year.  And now we are just one month from his first birthday….  It has been a shining beacon awaiting us throughout this journey.  I will never forget sitting in the PT waiting room visiting with his speech path.  We were talking about the mom’s and the babies from years past, before modern medicine… With a flip of her hand towards him she said “Like him…without his surgery and swallowing help… he’d be dead before his first birthday.”

I had to work really hard on keeping my exposure.  Her words cut through me like a knife.  She was right… I have heard countless stories of babies from the early 1900s who had died because they “could never eat right”  “were never very strong”  “got lots of pneumonias”  “Had breathing problems” etc…  They were like him….. he was like them…… their mom’s had to watch them slip away and bury them…. They had to lose their lives…. Yet somehow we were fortunate enough to live in not only this era… but in this part of the world… and my child had access to what he needed through this journey to be able to go on and live to see his first birthday…… 

For those with the typical Laryngomalacia, one year is often the turning point of “growing out of it.”  So, for Gabe, he needed the surgery, but he has also needed to grow and build those floppy muscles into strong, lean, breathing and eating machines.  We are now in the final lap of the “one year marathon”  Perhaps after one year the cycle of respiratory distress, hospitalizations and steroids will wind down and even stop?  One can only hope.  It has been said that the promise of “one year” is a fallacy.  I don’t know what the future holds, but I am a mom who is hopeful for my child.

Maybe one year will be the mark where he is actually willing to look at the food I present to him without gagging, and swallow it without throwing up…. We will continue with feeding therapy and keep him a big strong boy, whatever that takes.  My heart hurts when he struggles.

All of the above will matter on the day we bake a cake and gather to celebrate Gabe being 1 year old… but what will really matter most… is that he is alive.  This strong, resilient, loving, smiley, happy boy who never complains, adores his family, enjoys the attention of nurses, doesn’t fuss, and who has taught me much about love, life, parenting, and faith… is alive…. And I couldn’t be more grateful. 

Written by: Gabe's mom, LM Supermama