Reflections

28 Sunday Jun 2015

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SolanaIrispraying

We don’t see things as they are, we see them as we are.

The contrast in scenes from 2 years ago, to today, takes my breath away. No one can fully prepare to see their child go through a traumatic surgery, yet I wouldn’t trade the experience for anything. It has given me greater perspective, and also shaped both of my daughters .. giving them a view of life, love, family, and friendship, far beyond their years.

Solana’s love for her little sister makes my heart swell. She was nervous for Iris, but never shied away from supporting her. Instead, she visited Iris in the hospital each day, gently stroking her hair, singing sweetly to her, taking her for rides in a red wagon, celebrating victories, and offering encouragement every step of the way.

IrisICU

Iris, at 6 years of age, fully understands that life is a gift. She’s seizing it with an almost unfathomable vigor. She knows she has physical limitations, but she pushes those limits daily .. hiking, swimming, dancing ballet, and showing the world that she is a warrior in every sense of the word.

IrisHiking

My journey with my daughters has reshaped nearly everything I thought I knew about life. I’ve found a deeper strength in myself, a greater acceptance of myself, and a love that transcends fear, challenges, and loss.

This amazing journey has reaffirmed what I hope to teach my girls: To fight for what they believe in, and respect others doing the same. Use their voices .. especially on behalf of those who can’t. Trust their faith, and don’t be afraid to lean on it. Embrace and explore their intellectual curiosity. Never forget that love is all around them. Focus less on life’s limitless possibilities, and more on the simple thought that there is so much life .. in life.

SolanaMommyIrisPalosVerdes

We wish you a wonderful summer! Love and hugs, The Hickey Girls

Warrior

28 Saturday Mar 2015

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Warrior: a person who fights in battles and is known for having courage and skill

I often refer to Iris as my little warrior.  She has experienced a level of physical trauma that at once rocked my core .. but ultimately took me on a spiritual journey that strengthened my faith, adjusted my outlook, and forged my purpose.

We spent the past week on the Big Island for spring break.  It has been one of the best vacations of my life.  To watch Solana and Iris explore nature, take in the rich and colorful history of Hawaii, and push their physical boundaries, has been pure joy.

Physical activity does not come easy for Iris.  She spent the first four years of her life in a crib.  The muscle atrophy she developed, combined with her heart defect and tracheal stenosis, left her little body underdeveloped and weak. When we were first united, her breathing was labored .. at rest.  She had no muscle strength for anything beyond a slow walk.  She couldn’t climb steps, skip, hop, kick a ball, or run.

She now does all of those things, and, as of this afternoon .. swims!  She has been swimming regularly as part of physical therapy, but she always wears a life jacket or water wings due to her muscle weakness and respiratory limitations. She has longed to swim without them.  She frequently tells me that she dreams of being a great swimmer.  And if there’s one thing I know about my little warrior .. her body may not be the strongest, but her determination is.

This afternoon she decided to give it a shot, and that moment turned into two hours of swimming.  Solana was cheering for her and offering high-fives .. and Iris was beaming with pride.  Iris doesn’t believe in playing small in life .. because she now has a choice.  She doesn’t remember much about the first four years of her life, but she remembers being weak.  Her surgery not only strengthened her heart, but it opened the world up to her.  She now has a body that wants to be tested.  She’s acutely aware of her limitations, but, at six years of age, she also knows that life is best experienced by challenging those limitations .. or better yet, proving they don’t exist.

Here we are in front of Kilauea:

IMG_6801 .

… and my little warrior swimming!

https://vimeo.com/123508113

Tomorrow we head back to the NW, feeling rejuvenated, and incredibly blessed.

Aloha,

The Hickey Girls

Moments

03 Wednesday Sep 2014

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Life isn’t a matter of milestones, but of moments

Today is the first day of kindergarten for Iris. A magical milestone in a child’s mind.  In my mind, though, it is a moment. A moment to be present, and take it all in .. like the countless moments, big and small, that fill each day.

I watched her walk into her new class this morning with excitement and curiosity in her eyes, and I couldn’t help but reflect on what she has been through. This day .. this moment .. was not a certainty for her, or us. And the journey that brought us here is defined by love, trust, and a remarkable man.

When you’re matched with a child from the China Waiting Child Program (children with medical conditions), you have 72 hours to review their file. This time becomes a frantic, emotional race to review the child’s medical files, connect with specialists, and understand short and long-term health challenges .. all in an effort to make the most informed decision for your family, and the child.

When I was matched with Cheng Chun (Iris), there was an added complication because I was not familiar with her specific congenital heart defect. My adoption agency gave me a list of specialists that regularly review medical files, and I also reached out to my local contacts. Over the next 72 hours, I had lengthy conversations with four doctors, and received opinions that teetered between unfavorable, and frightening. I had a huge pit in my stomach as I tried to process the severity of Cheng Chun’s condition, the complexity and risks of surgery, her long-term prognosis, and the impact to Solana. I had a few more phone calls to make, and next on my list was Dr. Mark Reller, head of cardiology at Doernbecher. I told Dr. Reller about the opinions I received, and my fears. Dr. Reller’s opinion was dramatically different from the others, and he optimistically said, “You need to call Dr. Stephen Langley. He has successfully performed this surgery with great outcomes.”

Hope.

Dr. Langley and I connected less than an hour before I needed to give an answer to my adoption agency. Dr. Langley walked me through the surgery, recovery, short-term challenges, and long-term prognosis. His next statement is forever imprinted in my mind; “If you adopt this little girl and I perform her surgery, I will do everything in my medical power to give her the best chance for a long, healthy life.” I still can’t say, or write, those words without tearing up. I had only met Dr. Langley once briefly, but I was well aware of his reputation and integrity, and I knew he wouldn’t make that statement unless he was confident that he could fulfill it. So I believed him. With every part of my being .. I believed him.

I hung up the phone with Dr. Langley, called my adoption agency and said, “Yes!”

That was April 2012.

On January 28th, 2013, Solana and I were united with Iris in Hefei, China. In the coming weeks I learned that Iris’ condition was even more serious because of the malformation of her trachea, but Dr. Langley had planted a seed of trust, and although I was scared, I knew Iris was in the best hands possible. On June 28th, 2013 the promise within Dr. Langley’s words was fulfilled as he and Dr. Michael Rutter (the amazing otolaryngologist from Cincinnati Children’s Hospital) worked side by side, seamlessly, to repair Iris’ heart and reconstruct her trachea.

On that day, Dr. Langley not only repaired Iris’ heart .. he expanded mine.  Exponentially.

Last week I had the pleasure of attending a reception for Dr. Langley. A large group of colleagues, friends, and patient families gathered to celebrate this brilliant surgeon. As I listened to toast after toast, several words and phrases echoed around the room: Integrity. Team Player. Trust.  Compassion. Respect. Admiration. Gratitude. It appears that Dr. Langley has not only played a huge role in our lives, but the same was true for everyone else in the room.

So on this first day of the school year, I’m overflowing with pride and excitement for my daughters, and I’m thankful for Dr. Langley. He, indeed, gave Iris the best chance for a long, healthy life .. and he has given my family the best reason to celebrate, and cherish, the moments.

Here’s a photo of Iris and Solana with Dr. Langley at his reception last week:

DrLangley3

… and a photo of Iris and Solana as they headed to The International School this morning:

firstdayofschool2

Love and hugs,

The Hickey Girls

Be Brave

28 Saturday Jun 2014

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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

Before and After

04 Sunday May 2014

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Iris had her second balloon dilation on Friday in an effort to allow more blood to flow to her left lung. Her open-heart surgery resolved the larger issues associated with her congenital heart defect and tracheal stenosis, but there remains diminished blood flow to her left lung as a result of these conditions. Her first balloon dilation was back in September and the improvement from then to now is so dramatic that pictures communicate far more than I can.

Here is a photo from her balloon dilation that Dr. Armsby performed in September that shows normal blood flow to her right lung (shown on the left in the photo), and diminished blood flow to her left lung:
Dilation2014-6

And here is the photo from yesterday:
Dilation2014-2

Absolutely spectacular!

The photos are taped to my refrigerator for now, but there’s a strong possibility I will enlarge and frame them. Those beautiful branches in the photos are filled with blood flowing to Iris’ lungs. And is it ever flowing. She still doesn’t have normal flow, but from where she started to where she is now is nothing short of remarkable.

Here is Iris before her procedure with her Blazer rally towel: (and right before Dr. Kelly Ryan, our favorite anesthesiologist, walked into the room)
Dilation2014

Solana giving her a good luck kiss:
Dilation2014-4

And in recovery after her procedure:
Dilation2014-6

Recovery is my least favorite part of the day. Iris wakes up scared, in pain, and attached to heart monitors, her IV, and a myriad of other equipment and tubes. I’m thankful that they’ve always allowed me into the recovery room before she wakes up. I’m the first person she sees when she opens her eyes, and her little hands immediately reach out for me. Solana came into recovery with me this time and stood next to Iris’ bed, gently stroking her hair and whispering to her. The nurse was a little teary-eyed watching this scene play out. I’m so proud of both my girls.

We’ll follow up with Dr. Armsby in a month, and Iris will have a lung scan in the fall. Based on the success of the balloon dilations so far, Dr. Armsby thinks we may be able to wait 18 months before the next one .. fantastic news!

Iris is home resting, and I find myself pre-occupied in the kitchen .. staring at the most beautiful before and after photos I’ve seen.

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

Giving Thanks

28 Thursday Nov 2013

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Today marks the 5 month anniversary of Iris’ surgery and the 10 month anniversary of the day she was united with Solana and I. It’s been a crazy whirlwind but I wouldn’t trade these 10 months for anything.

As I count my blessings today, I’m thankful for the love and support of family and friends, His guidance through this challenging and remarkable year, Solana’s compassionate and loving soul, the amazing doctors (Stephen Langley, Michael Rutter – Cincinnati Children’s, Henry Milczuk and Laurie Armsby) who did what they do best and, in the process, gave Iris not a new life … but a better life. And of course, Iris … my little warrior.

We wish you all a wonderful Thanksgiving.

Here’s a glimpse into our journey over the past 10 months:

https://vimeo.com/80636716

Wagons

18 Friday Oct 2013

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Iris took her first ride in a little red wagon at Doernbecher in early July. She had just been transferred out of the PICU, detached from most of her tubes and equipment, and well on her way to recovery. I pulled her up and down the hallway of her unit … sometimes escaping the double doors for a trip around the hospital to fetch her favorite treat … a hard-boiled egg from Starbucks in the lobby. She loved it. It was a chance to explore and feel like a child when she was going through something that was anything but an innocent, childlike experience.

DCH2013-2

Today we were back at Doernbecher. Iris had a follow up bronchoscopy with Dr. Milczuk to check her airway. Iris’ tracheal stenosis was caused because her left pulmonary artery was wrapped around her trachea causing a malformation and extreme narrowing. During her main surgery Dr. Rutter (Cincinnati Children’s Hospital) cut her trachea in half horizontally and then made a vertical slit along the front side of one half and the back side of the other half and slid the two together. So her trachea is now shorter but wider than it originally was. It’s still much narrower than a normal trachea but Iris has something to work with … and she’s making the most of it. I was excited today because I thought if the bronchoscopy went well she wouldn’t need another one for 6 months. It’s hard to imagine what it would be like to have that long of a break but I wanted it … for Iris.

It went well. Fantastically well. If Iris remains stable this winter (fingers and toes crossed), she will see Dr. Milczuk in clinic next spring. No procedure necessary! Her airway is clear and there hasn’t been any narrowing since it was reconstructed. WOW!

So today Iris took another wagon ride … all the way down to the front doors of the hospital. I’m not sure if it’s her last wagon ride at Doernbecher because she still needs additional procedures related to her arteries, and I’m not sure if today’s wagon ride felt differently to Iris … but it did to her mommy.

DCHwagonride2

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

Home Stretch

30 Friday Aug 2013

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Iris is entering the home stretch.

She had her echocardiogram yesterday and an appointment with Dr. Armsby. Her echo looked good. Dr. Armsby was pleased that Iris’ left lung is getting sufficient blood flow. That was a concern since her left pulmonary artery is so tiny. I was able to see the right pulmonary artery on the echo for comparison. The size difference is dramatic.

So the next step will be a procedure in the cath lab on September 16. Aside from follow-up appointments, this will be Iris’ last procedure. Dr. Armsby will perform a balloon dilation to increase the blood flow through Iris’ left pulmonary artery. The success of the balloon dilation will determine whether or not Iris will need a stent. Fingers crossed.

It’s hard to believe we just reached the 2 month anniversary of Iris’ open heart surgery. The only sign that she’s been through a major surgery is her beautiful scar. She’s healthy and strong, and breathing far better than she was prior to her surgery. In fact, earlier this week we were walking the dog and Iris started running. Really running. I knew she’d stop herself when she tired, so I let her go. She didn’t run far, but what mattered was that when she stopped she wasn’t panting. Solana watched in amazement and said to me, “Iris ran. She couldn’t do that before!” Running took too much out of Iris so she avoided it, along with other physical activities. She still can’t keep up with other kids .. but considering her remarkable recovery from having her heart repaired and her airway reconstructed .. it won’t be long before she’s keeping up. And passing by.

Here’s a picture of Iris and Barbie hanging out waiting for Dr. Armsby:
Irisdocappt

And here’s a picture of Iris and Solana on an airplane later last night. With Iris’ continued good health, I finally felt comfortable venturing beyond arms-length from the good doctors at Doernbecher, so we hopped a flight to San Francisco for the holiday weekend …
IrisSolanaSF

We wish everyone a wonderful Labor Day weekend.

Hugs to all from the Hickey girls!