For our first edition here, let’s just get acquainted. In whatever format you choose, write a post sharing who you are, the basics of your child’s story and one thing that really stood out to you from your child’s first major hospital or medical experience and why. (For carnival rules and information click here.)
Jacqui’s Story
So much was riding on that one day — all of our dreams, years of heartbroken prayers, hopes still fragile from years of infertility and repetitive miscarriage. It was all coming down to this one sunny day in September, and we wondered as we drove to the hospital that morning how it would end. We cried through the entire thirty minute drive to the hospital, not knowing if we were going to be saying hello or goodbye. Would we hear her cry? Would she need to have a trach? Would she breathe at all? Would we get to hold her? What if…? But I couldn’t bear to finish the thought of my worst fear.
Months earlier we had learned the devastating news on an early ultrasound. Our baby had a large mass on the right side of her face and neck. Opinions were mixed on the actual diagnosis. Originally we were told that we would likely miscarry, that she probably had Turner’s Syndrome. That she might have Down’s Syndrome, Trisomy 18, or a host of other complications that we lost much sleep over. Later we were told that the mass was a teratoma and that she would likely die at birth or during a surgery to attempt to secure an airway. We were pressed to consider ‘termination’ or at the very least, an amnio. We adamantly refused both. We began fighting to find a perinatologist who cared whether she survived and found one a three hour drive away. A complex birth plan and monitoring system was put into place to give her the best odds possible for her survival. A modified EXIT procedure would be performed in an attempt to make sure she had a secure airway throughout the birth.
In the OR suite, I lost count of the number of medical personnel in the room at somewhere over twenty. There was the perinatologist’s team, a surgical team, an ENT surgeon and his team, a respiratory therapy team, a NICU team… and probably others. I felt conflicting emotions of resentment over the number of people in the room (mostly because this birth was so different than we had hoped) and overwhelming gratitude that so many people were there to help try and keep our baby safe. And I started to quietly cry when they told me they were starting the delivery, wishing I could keep her safe just a little longer, hoping — praying that she wasn’t about to die.
I remember hearing a funny little squeak, and wondering what it was. I looked up from my white knuckles to Ken’s awestruck face that suddenly burst into a mile-wide grin. That sound had been our baby’s first beautiful cry. Her second attempt was loud and long. They held her up for a moment for me to get my first glimpse of her. I laughed as tears rained down my cheeks and Ken joyously whooped, “Do you hear her, honey? She made it! She’s OK!”
Then the room was a bustle of serious, purposeful activity. I watched from an aching distance while they intubated her as a precaution, and started an IV. Ken whispered reassuringly in her newborn ears as she tightly gripped his finger. They wheeled her over for a moment and I got to stare into her bottomless ocean-blue eyes and whisper, “I love you, Jacqui…” before they whisked her off to the NICU.
Much of the rest of our hospital stay was a blur. Back and forth trips to the NICU, several floors away from my room. Waiting for what seemed like forever as she endured a CT scan and an MRI before we learned that her mass was a lymphatic malformation, and something that we would not be able to medically address until she was at least six months old. The moment of elation when they took her off of the ventilator and she breathed on her own. Struggling through the paradox of being told we couldn’t remove her from the NICU until she could eat on her own while the nurses stuffed her with tube feedings under medical orders. Worrying over her very scary breathing pattern.
Her breathing. That is the one thing that stood out to me more than anything during that first hospital experience. It was so labored sounding. She snored and often stopped breathing all together, resuming only after she was jostled. I was afraid to leave her in the NICU, but they did have her hooked up to a cardiac monitor. I asked the attending physician about it and he told me there was no cause for worry. That newborns often sounded like that. She was just “junky” from the birth and it would clear up in a few days. A dark cloud of doubt gathered in my heart as I cautiously sat back to watch and wait.
When it was time to go home, her breathing hadn’t improved. She scared me. I was afraid I would fall asleep and she would stop breathing and never wake up. I asked the attending to send her home with an apnea monitor. He refused. Flat out emphatically refused. Even when I tried to press the matter. Said she was fine and that she didn’t need one. I asked if the lymphatic malformation could swell up like lymph nodes do if she caught a cold. He shook his head no. Told me I was worrying too much, but something in his eyes as he said it unsettled me. He left and I tried to pinpoint what it was about the conversation that bothered me. The substance of it flitted just out of reach from my sleep-deprived brain. In my arms, Jacqui sputtered and stopped breathing for the hundredth time. I jostled her and she inhaled raggedly. “What if…,” my heart whispered, “What if he’s sending her home with you to die?” I went cold. Numb with fear. Then I flashed white hot with determination. Not if I could help it.
After we got home, we took shifts sitting up with Jacqui keeping her breathing until our appointment with her pediatrician the next day. As we walked into the office the next morning I whispered to Ken, “We come home with an apnea monitor, or not at all.” We got our apnea monitor.
One week later, that apnea monitor saved her life. Jacqui caught her first cold virus. In the middle of the night, her lymphatic malformation began rapidly swelling and shutting off her airway, just as I had feared it might. Her heart rate monitor alerted us and we got her to the local ER just in time to intubate her before her airway was completely shut off by the swelling.
Jacqui spent the next nine weeks in the NICU. Six weeks on a ventilator. She had a tracheostomy. A G-tube placement. MRI’s, CT scans, IV and PICC line placements, CT guided injection therapy of her lymphatic malformation. A host of heroic and horrific experiences that no newborn should ever have to endure. That no parent should ever have to watch.
And it was just beginning.
Jacqui is five now. She’s been under anesthesia for various surgeries and procedures twenty-five times now. Twenty-five, and I know in my heart there will be more. And it never gets easier. And I worry. I worry whether we have made the right choices for her, whether tomorrow will bring some new hardship for her to endure.
But mostly I’m grateful. Grateful that for some reason that I still fail to comprehend, God chose us. For some reason, He believed we were the right parents for this amazing little girl. It humbles me. Inspires me to live up to that sacred trust we have been given. Because of her, our life is filled with a joy all the more precious for the sorrow we have known through her. And in those moments where I long to completely give up, I remember that she was a gift. A gift that I was entrusted with. She is counting on me and I refuse to fail her.
What About You? Tell Me Your Child’s Story…
parenting children lymphatic malformation tracheostomy G-tube sclerotherapy motherhood Finding Courage Through Sharing Blog Carnival Finding Courage Through Sharing NICU medically fragile blog carnival
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