The Test is Positive

Nothing causes an emotional flood in a man more than hearing the words “I think I’m pregnant.” My wife Amy spoke these words to me nine months into our marriage. Excitement prevailed as my primary emotion during Amy’s first trimester but we kept the news to ourselves. We made the big announcement to our family on Thanksgiving day when Amy hit the 12-week mark. The blackest of Black Fridays followed.

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Amy went to her job at a local clothing boutique that day. The store was inundated with savage bargain shoppers when a sense of doom washed over her. She ran to the bathroom where fear overwhelmed her — blood! She called me and I ran to the store. I took her to my emergency room – Diagnosis: Spontaneous Abortion. There were no words, only devastation.

We intended to follow her doctor’s advice — don’t try for at least a year — but threw caution to the wind on our first anniversary the following January. Six weeks later a most vibrant plus sign radiated on a home pregnancy test. Fear was now the only emotion prevailing. Amy’s doctor scheduled a prompt ultrasound to alleviate our panic; the ultrasonographer quickly accomplished this. “There’s the the baby! Its heart is
beating and Oh!!! There’s the other baby and its heart is beating too!” Twins — we burst into tears!

I attended a conference on organ transplantation two months later. One of the speakers was a kidney/pancreas patient. His talk engrossed me because I have Type I diabetes. He spoke of being diabetes-free and the hope for a future that existed within him. My thoughts turned towards my blossoming family as I listened. I asked myself if there was more I could do to ensure my future. I broached this subject with a transplant coordinator from the organization (pun intended) sponsoring the conference. She excitedly spoke of a clinical trial underway involving pancreas-alone transplants in healthy diabetics. She made a phone call and I left the conference with an appointment for evaluation.

The transplant surgeon practically rubbed his hands together while looking at me. I was a blue ribbon candidate! I swear if he had a pancreas on his shelf he would have ripped me open and slammed it in that day! I was just as excited but my wife (now four months pregnant but looking eight) was scared. The following months included ultrasounds, blood tests and echocardiograms for both Amy and me. Amy also squeezed in pre-term labor, flash pulmonary edema and bed rest. The twins, Zoe and Freddie, arrived three weeks early happy and healthy (Zoe, a peanut at 6lbs, 13oz; Freddie, a beast at 8lbs, 14oz). Life was grand but the transplant beeper on my hip represented a guillotine waiting to fall.

Life with newborn twins was exhausting. IMG_0932Sleep deprivation, feeding and healing consumed Amy’s world. Zoe was happy most of the day but would scream and cry for two hours every evening. You could set your watch to this nightly event. Freddie was diagnosed with reflux and ensuring adequate caloric intake challenged us. Additionally, we got mobbed every time we ventured in public. Strangers oohed and aah’d gawking at the twins. “Twins! What a blessing. It must be so wonderful!”, they’d say. All that I could think was, “I got a set I’ll sell you cheap.” My thinking changed when Zoe got a fever in her 6th week of life. I took her to our local ER for evaluation. As I held her for a lumbar puncture (spinal tap), I could feel nothing but love for my little blue-eyed angel.  It turned out to be a mere ear infection much to our relief.

Freddie started prematurely graying my hair with his feeding issues but then led me full force into early male-pattern balding. One day I was admiring my son (MY BOY!!!) under the sunlight shining through our skylight. He suddenly went wide-eyed then winced. My clinical mind knew I saw something wrong. I grabbed my pen light, opened his eye and there it was – a malformed pupil. It looked like a keyhole seen in patients following surgery for cataracts. I called his pediatrician who reassured me this wasn’t an emergency. She would see him at his weight check visit later that week. My reassurance went from 10 to zero following his appointment. She determined Freddie’s irises were not fully formed, something called a coloboma. She also noted defects behind both of his ears. This information gave her concern for something genetic, specifically CHARGE syndrome.

Our next steps involved seeing multiple specialists including Genetics. Zoe also underwent evaluation because she was his “wombmate”. The specialists determined Freddie had CHARGE effects but not the syndrome. Ongoing monitoring was required but they believed he escaped the worst aspects of CHARGE. Zoe showed no evidence of the syndrome. Just as it started to feel like we could breathe again, Freddie ended up in a pediatric ICU due to an apnea episode related to his reflux disease. He would spend the next year on an apnea monitor and have several more episodes.

I learned so much about being a nurse through these experiences. Lessons on care and compassion taught by many of the people unexpectedly finding their way into our lives. Additionally, the love between Amy and I grew exponentially. These tests intimately weaved us together; we discovered a strength that enabled us to face anything.

That’s when the guillotine fell.

“Wake up, WAKE UP!!! What’s that noise?”, my wife asked me rousing me from sleep. From foggy to wide awake in two seconds I replied, “That’s my transplant beeper…”

Next Installment: Spare Parts

 

9 thoughts on “The Test is Positive

  1. Your children are so lucky to have you and your wife as their parents. I can just sense the amount of unconditional love you’ve got for your bundles of joy. All the best to you all! My prayers for your entire family…

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  2. Adam, I didn’t know you also had twins…we need to get a cup of coffee soon, I could use some advice. 11 month old twins and a 2 year old foster son makes for some draining but rewarding days, I get the sense that you’d understand. Reading about your life and seeing the Tozer quote reminds me you are living 2 Cor. 1.

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  3. Adam, I don’t know if you remember me from Rhoads 5 but we worked together and I always admired you as a nurse. I am enthralled by your blog. Been reading for over an hour! You are such a talented nurse, writer and just overall an amazing person. I wish you all the best. Thank you for being so inspiring

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