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Iris Upon A Star

Tag Archives: pulmonary artery sling

Be Brave

28 Saturday Jun 2014

Posted by LRH in Uncategorized

≈ 6 Comments

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Anais Nin, Dr. Michael Rutter, Dr. Stephen Langley, Iris, pulmonary artery sling, tracheal stenosis

Early this morning I found myself sitting on the edge of Iris’ bed. She was sleeping peacefully .. probably dreaming about our recent trip to Disneyland and Palos Verdes. As I stared at her, my thoughts cycled through a mental scrapbook of the past year.

One year ago today, Iris underwent open heart surgery and tracheal reconstruction. Every minute of that day is as vivid as if it were happening again in real-time. I remember kissing Solana goodbye as we left for the hospital, and she excitedly prepared to head to camp with our nanny. I can see the faces of the people on the tram that morning as they headed up the hill to work. They looked tired, and curious about the little girl joining them that morning. I can feel the tram gently swaying back and forth .. I actually paced my breathing to that rhythm. I can hear the voices of Dr. Langley and Dr. Rutter. Who would’ve thought that a doctor from England (Langley), and a doctor from New Zealand (Rutter) would be operating on a little girl from China .. in Portland. They calmly, and confidently, answered my last-minute questions. Between the range of emotions, that I had little control over, and my garbled speech, I’m surprised they understood a word that I said. But they did, and they continued to reassure me.

I remember Iris’ face. So innocent and unaffected by what was happening around her. I felt guilty. Guilty that I was unable to explain to her what was about to happen. Guilty that her pure, sweet, little body was about to undergo a dramatic incision, and that the next several days, weeks, and months would present challenges no four-year-old should experience.

But along with that guilt, was the awareness of Iris’ brave spirit. Every step of the way throughout this journey, she has shown me, and everyone around her, what it means to be brave in the face of the unknown. June 28, 2013 was no different. And each day since .. Iris has continued to demonstrate how to live a brave life.

Life shrinks or expands in proportion to one’s courage.

I left Iris’ room this morning, and went to meditate. It’s a practice I’ve done for many years as a way to center myself as I begin my day .. and as I’ve done for the past year, I finished my meditation with these two words:

Be brave.

Here’s Iris last week at Disneyland: (with our motto on her shirt)

CAsummer2014 148

.. and the three of us in Palos Verdes:

CAsummer2014 398 (3)

Have a wonderful summer!

Love and Hugs,
The Hickey Girls

Our Journey

12 Sunday May 2013

Posted by LRH in Uncategorized

≈ 8 Comments

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Doernbecher, pulmonary artery sling, tracheal stenosis

When I was matched with my daughter, Iris, I received medical reports indicating she had a heart condition known as pulmonary artery sling.  In the few days that I had to review her limited medical information and make a decision, I spoke to multiple doctors at Doernbecher Children’s Hospital.  I feel blessed that they were knowledgeable of her condition and able to give me the necessary assurance to proceed with her adoption.  It was a serious, but repairable, condition.  Of course, as a mom, in the back of my mind I was hoping that some information got lost in translation … that when I finally brought her home, she’d be evaluated and I’d find out it wasn’t as serious as originally thought.

Unfortunately … her diagnosis was confirmed the week we arrived back in the U.S.  An ultrasound showed that she did, in fact, have pulmonary artery sling … a serious heart defect that can only be repaired via open-heart surgery.

My heart sank.

I knew, going in, that it was a possibility … but as I sat in the cardiologist’s office, with little Iris on my lap, reality set in.  And the tears flowed.

Days passed and I was able to wrap my arms around our situation and Iris’ path to health.  I found comfort in knowing that a brilliant surgeon at Doernbecher had experience with her condition and would be the one to operate on her.

In the meantime, Iris has been getting stronger each day, but physically she can’t do what other children her age can do.  She has labored breathing on a good day and when she exerts herself, it worsens to the point where she is too tired to keep up.  She stops herself.  It worries me ….

Our next step was to get a CT scan, and a bronchoscopy to determine if there is any damage to her trachea.  Those tests were performed a little over a week ago and the results were such that her doctors wanted to review her condition during their weekly conference in order to receive as much input on her case as possible.

That conference was yesterday.  Iris’ full diagnosis is: Pulmonary Artery Sling with Tracheal Stenosis.  Two serious conditions affecting her heart and airway .. each require major surgery.  While there is a surgeon at Doernbecher that can perform the operation for the pulmonary sling … there is not a surgeon with experience in this location of tracheal stenosis.  She will most likely undergo one surgery, repairing both conditions …. but her operation will occur at another hospital.  We don’t know where yet, but the search has already begun and Doernbecher will remain by our sides through this.  They are as determined as I am to find the best possible surgeons for Iris.

Yesterday the tears flowed again.  Overflowed.  But as Iris’ cardiologist, Dr. Laurie Armsby, so gently said to me; “This journey will be an emotional roller coaster and there will be some bad days.  Today is one of them.  But there will be good days too.”  I believe that.  Completely.

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Anais Nin anniversary balloon dilation bronchoscopy China Cincinnati Children's Hospital Doernbecher Doernbecher Children's Hospital Dr. Armsby Dr. Henry Milczuk Dr. Kelly Ryan Dr. Langley Dr. Laurie Armsby Dr. Mark Reller Dr. Michael Rutter Dr. Milczuk Dr. Rutter Dr. Stephen Langley God Hawaii Hefei Iris perspective pneumonia pulmonary artery pulmonary artery sling Reflection Rose Kennedy stent tracheal stenosis warrior

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