Tag Archives: Dr. Langley

Anniversary

28 Tuesday Jan 2014

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One year ago today I opened the door of our hotel room in Hefei, China, with Solana excitedly bouncing up and down next to me, and little Iris calmly walked into our family. Her cheeks puffy and red, her legs wobbly, and her beautiful brown eyes looking straight into mine. Recognition.

Within a few minutes, our Chinese guide asked her who I was and Iris responded, “Mama” … I remember gasping. Six months prior, I sent a pillow to Iris’ orphanage. It was silk-screened with a large photo of me, and a smaller image of me with Solana. I didn’t know if it ever made it to Iris, but clearly it did. Iris slept with it every day for six months. When she walked into our room on January 28, 2013 she did not fully understand what “family” meant, but she knew we were hers.

We loaded into a van and Iris climbed onto my lap as though she had been doing it every day for the past 3 years. We drove to the civil affairs office and the bank, for meetings and paperwork which consumed our day. As we prepared for bath time that night, I began removing her countless layers of clothing. Coat, sweaters, shirts, undershirts. What I ultimately found was a tiny, seemingly underdeveloped body .. diminutive compared to her head. In fact, she was all head. Her arms and legs felt like mush, and although she could stand and wobble a few steps, that was the extent of what she could do physically. I was caught off guard, and scared. Was this the result of her heart defect .. or was something else going on in her tiny body. I emailed photos to Dr. Langley at Doernbecher. I called our guide and asked if I could take her to the hospital in the morning. I prayed. And I prayed.

I so badly wanted a sign. Any indication to let me know that she would be fine. That we would be fine. I was in and out of sleep all night. Waking to pray; to God .. to my dad in heaven. Looking anywhere and everywhere for a sign. When the room finally started to come alive in the morning, I found myself staring at Iris. Her cheeks swollen to the point of being shiny, and even redder than the day before.

China2013 019 (4)

But she was snuggled up next to her sister. She was with her family, and I knew. She would be fine. We would be fine. The sign I was searching so desperately for .. was in front of me. It was Iris.

We did go to the hospital to have her checked out. Fortunately the doctor knew basic English and was able to communicate that Iris’ orphanage was understaffed and she was left in a crib 90% of her day. What I was seeing was the result of poor nutrition, muscle atrophy and the effects of her heart defect. His words to me, “Good nutrition and activity will help her a lot, and she needs her heart fixed. It’s very serious.”

In the twelve months that have passed, and one incredible medical journey, Iris has taught me about strength, resilience, and the infinite love we are capable of.

Happy family anniversary Iris … my little warrior.

This photo was taken in the van one year ago. My precious family:

ChinaVan

The Red Thread

16 Monday Sep 2013

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“An invisible red thread connects those destined to meet, regardless of time, place, or circumstances. The thread may stretch or tangle, but never break.” – Ancient Chinese Proverb

As I sit in Iris’ room at Doernbecher tonight, I am reminded of this proverb. An invisible red thread connected me to both of my daughters and them to each other. At the right time. At the right place. Life has presented challenges and tested every part of my core, but I honestly cannot imagine my life any other way. It is exactly how it was meant to be and, even on challenging days, I feel grateful.

So today’s news:

The balloon dilation went well. The complicated part is that the vessels coming off of Iris’ left pulmonary artery are severely hypoplastic and very close together. It makes ballooning them tricky because ballooning one might compress the other, making it difficult to get the wire in it to perform the balloon dilation. Dr. Armsby placed wires in two of the vessels before she ballooned them and was, therefore, able to balloon them both … but they’re still tiny and Iris will need future procedures. It’s the nature of her unique heart. Its imperfections are what makes it, and her, so strong and beautiful. At this point, Dr. Armsby plans to balloon the vessels once a year, and in 2-3 years they will be a sufficient size to have stents put in. The stents will be replaced every few years until Iris is fully grown. Nothing is certain, but this our plan as of today.

Here is a photo of Iris’ pulmonary arteries (the lines going up the left side of the photo are her sternal wires). You can see the line coming up from the bottom that the catheter followed to the larger opening. That opening is her main pulmonary artery, and the left and right pulmonary arteries branch off from it. The right pulmonary artery (shown left in the photo) is normal with great blood flow. It extends out and then branches off. The left pulmonary artery doesn’t extend out in the same way. Since it was wrapped around her trachea, part of it was removed … so those teeny tiny branches come off almost immediately, which is problematic:

Irisballoondilation

So today was a good day in the sense that we have a better understanding of our path. There will be plenty of doctors’ appointments and more procedures in her future, but Iris’ health is 180 degrees from where it was a few months ago … which takes me back to the red thread.

A red thread connected me to my daughters … but it also connected Dr. Langley, Dr. Rutter, Dr. Armsby, and Dr. Milczuk to us. At the right time. At the right place.

Here is Iris sleeping peacefully tonight in her hospital bed. I truly have more blessings than I can count:

IrissleepingDCH

Modern Medicine

20 Monday May 2013

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This week I visited with Dr. Stephen Langley, Doernbecher’s chief of pediatric cardiothoracic surgery.  He’s a guy that you pray you never need, but are grateful for if you ever do.  Dr. Langley showed me (and my wonderful sister who joined me for the appointment) the 3D CT images of Iris’ heart.  The images made our jaws drop.  Not because of her heart defect, but because the images were so detailed … they honestly didn’t look real.  Modern medicine is amazing!  I’ve seen images of pulmonary artery sling online and in medical books, but looking at my daughter’s heart while Dr. Langley described the repair was incredibly helpful.  I feel like I have a solid understanding of her heart condition and the necessary repair.

Her trachea is more complicated.  Here is a photo that shows her trachea coming down and then it branches into two bronchi.  The left bronchus (shown on the right) is significantly narrowed … and that’s an understatement.

Iristrachea

This is the tricky part.  There are only a handful of specialists experienced with this type of airway reconstruction.  But the team of doctors looking after Iris has great connections throughout the U.S. and beyond and I’m confident they will direct us to the surgeons that are the best fit for Iris.

Iris’ team includes Dr. Langley (who, interestingly, is involved with a non-profit that provides cardiac care to orphans in China .. Little Hearts Medical), Dr. Henry Milczuk (Iris’ otolaryngologist) and Dr. Laurie Armsby (Iris’ cardiologist .. she’s also involved with Little Hearts).  Words cannot describe how grateful I am to have such a remarkable team of doctors looking after my daughter.  They are reviewing her case again on Wednesday and hopefully I’ll have a better sense of direction at that time.

Thank you for your continued prayers and kind messages.  It means the world to us.