Tag Archives: Doernbecher Children’s Hospital

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

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:
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And here is the photo from yesterday:
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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:
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And in recovery after her procedure:
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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.

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

Home

03 Wednesday Jul 2013

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It’s difficult to find any words right now because this moment is truly unbelievable.

Iris was discharged from Doernbecher today and is home. Yes, 5 days after undergoing MAJOR surgery involving her heart and airway .. she is home.

Iris has a long recovery in front of her, but her surgery was successful and she’s doing amazingly well. We came home with a handful of prescriptions, and she needs to wear a humidified air mask for a few weeks while her trachea is healing. There will be plenty of follow-up appointments and potentially another procedure in a few months .. but she’s well on the road to recovery.

I have so much gratitude for the team that made this day possible: Dr. Stephen Langley, Dr. Michael Rutter, Dr. Henry Milczuk and Dr. Laurie Armsby. They are brilliant doctors, and incredibly compassionate human beings. My daughter’s health .. and honestly, her life .. could not have been in better hands. Between their expertise, His guidance, and Iris’ brave spirit .. she will have the chance to run, play, dance and explore all of life’s wonder.

Here’s my tiny, but mighty, daughter .. ready to go home!
DCH2013-9

Progress

02 Tuesday Jul 2013

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So much has happened over the past few days. Iris has been disconnected from her breathing tube, feeding tube, heart monitor, drain tubes, central line and pacing wires. She went for her first true walk yesterday .. 3 days post surgery .. and was transferred out of ICU. I am in complete awe. These steps do not happen without pain, and there have been plenty of tears .. but those tears fall from the eyes of my brave little girl. At 4-years-old she just underwent open heart surgery combined with airway reconstruction, and is now talking, walking, eating, smiling, laughing .. and on the verge of being discharged from the hospital.

There is still a long road ahead of us, but each day brings progress.

Here are a few photos that capture Iris’ journey at Doernbecher …..

Sunday morning. Despite all the equipment hooked up to her, she was resting comfortably:
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Here she is out on her first walk Monday morning: (the nice ICU nurses gave her the stylish leggings)
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Practicing her coughs:
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Thank you for your kind notes and voice messages. I do read them, and listen to them, and I’m strengthened by your support.

Hugs.

24 Hours

29 Saturday Jun 2013

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Twenty-four hours ago they wheeled Iris back to surgery. Dr. Stephen Langley performed two repairs on her heart (closing her ASD and repairing her pulmonary sling) and Dr. Michael Rutter, from Cincinnati Children’s Hospital, reconstructed her airway. As they told me afterwards, it could not have gone any better. It was a huge surgery, but it went smoothly and with no surprises. The wonderful nurses that were in the operating room called me throughout her surgery to update me. Those calls were a reassuring lifeline to my daughter.

She’s in ICU now and will be here for a few days. Nothing can really prepare you to see your child with more tubes and lines connected to them than seems imaginable. I found comfort in knowing that this is part of the process and, more importantly, part of her healing. In the coming days .. little by little .. those lines and tubes will slowly begin to come off. She had a rough night last night battling pain and fever but I know better days are ahead. She’s a little warrior and she’s strong.

Her surgery is described as life-altering. Dr. Langley told me that she’s going to be completely different, physically, when she recovers. As difficult as yesterday was, it was also an amazing blessing.

There are no words to express my thanks to Dr. Langley and Dr. Rutter. They are the best in their fields and they have given my daughter the chance to have a long, healthy life.

IrisICU