Back On Track

20 Tuesday Aug 2013

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Dear pneumonia … you didn’t stand a chance.

It lingered, but is now completely out of Iris’ system and she picked up right where she left off. She and Solana have been making the most of these gorgeous summer days.

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And … Iris got her ears pierced.

I took her to Claire’s and, after looking over the available earrings, she decided on the “rainbow daisies” … if you know me, you can imagine my delight. As Iris was sitting on my lap waiting to get her ears pierced, a large family gathered to watch. The grandma was outspoken (understatement) and decided to take bets, with her family and other customers, on whether or not Iris would cry. Normally I would have found her behavior rude, but instead I started giggling. And when the rough-around-the-edges grandma proclaimed loudly, “I betcha five bucks that little girl is gonna cry!” … I couldn’t contain my laughter. Really grandma?

I should have placed a wager but my reward was watching the astonished looks on their faces as Iris talked and smiled through both ear piercings. No tears. No flinching. Guess grandma failed to see the beautiful, and clearly visible, scar on Iris’ chest.

Mission accomplished Iris. She’s part super hero … squashing challenges and naysayers with her smile and charm.

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Iris’ medical journey continues next week with an ultrasound followed by a visit with Dr. Armsby. Her balloon dilation (and possible stent) procedure has been scheduled for September 16 and she’ll spend one night at Doernbecher so they can monitor her.

We continue to move forward. Our new normal is working out just fine … I honestly could not feel happier or more blessed.

Hugs to everyone.

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Drat

10 Saturday Aug 2013

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Drat: a mild expression of annoyance

It was bound to happen. Iris has been cruising through her recovery for four weeks .. surprising everyone with how quickly, and strongly, she bounced back.

Then pneumonia came calling.

Iris had a high fever and labored breathing for a few days. No congestion, but enough of a change in her condition to worry me. We went up to see Dr. Armsby, stopping for a chest x-ray first. Her vitals were normal and, for a moment, I felt perhaps I had been hypersensitive to her symptoms .. considering all she’s been through, I am on high alert. The x-ray confirmed that she did, in fact, have fluid build-up in her left lung.

Drat.

She’s been on a high dose of antibiotics since then with very little change aside from her fever normalizing. She hasn’t developed any congestion, which is great, but she’s still winded doing normal activities. So the pneumonia didn’t hit hard, but it is lingering.

Iris won’t be doing this for a few more weeks: (I took these the week before pneumonia snuck up on her)

.. but she and Solana are still having a great summer, filled with endless laughter .. and Iris will be back on her bike and playing in fountains in no time!

Thank you again for your prayers, calls, notes and visits. We are forever grateful.

4 Weeks

26 Friday Jul 2013

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It’s hard to believe that 4 weeks ago I was sitting with Iris in ICU as she was waking from surgery.

The day began with a tram ride up to Doernbecher at 5:30am. There were only 4 other people on the tram with us that morning and they all worked at Doernbecher/OHSU. They looked adoringly at Iris, with no clue that this little girl was on her way up the hill to have open heart surgery.

We checked in at the lobby, received our bracelets and proceeded up to the surgery waiting area. It was empty and quiet. So quiet. Iris was called back to the surgery prep area within minutes and that began a procession of nurses and doctors stopping by to get her ready. Dr. Langley and Dr. Rutter stopped by to say hello and address last minute questions. And then Dr. Kelly Ryan came by. Kelly is an anesthesiologist and she comes highly recommended. She explained that her primary job is to ensure that Iris is comfortable and safe throughout surgery. Kelly discussed the medications she’d be using and gave me a good overview of how they impact the body. She then asked if I had any questions or concerns. I responded, “just keep her comfortable and safe.” That’s all I wanted.

When your child is taken back to surgery at Doernbecher, you are allowed to walk with them to the “orange line.” Kelly walked with us. I remember approaching that line and feeling my knees buckle beneath me. It is a moment, as a parent, of complete vulnerability. Handing your child, and your trust, over to another person. I gave Iris a hug and told her that I love her. I then glanced up at Kelly and, without saying a word, she looked into my eyes and ever so slightly nodded her head. A gesture that was, at once, both subtle and powerful. All I could see was compassion and confidence. Kelly knew exactly what I was feeling, and the look in her eyes provided me with more comfort than any words could.

I turned to walk away. The walk back seemed like a mile. Tears streaming down my cheeks. Legs failing me. It was the complete loss of control over my emotions. I walked into the waiting room sobbing loudly. My sister and niece immediately embraced me and we started walking down the hall so I could catch my breath.

When I finally did, I pictured Kelly Ryan’s face. And I knew … Iris would be comfortable. And safe.

I’m thankful every day for Iris’ amazing team: Dr. Stephen Langley, Dr. Micheal Rutter, Dr. Henry Milczuk, Dr. Laurie Armsby, and Dr. Kelly Ryan.

Iris continues to improve. She saw Dr. Armsby this week and received another good report. Her chest x-ray looks great. Her ultrasound is scheduled for the end of August and her next procedure, to potentially put a stent in her pulmonary artery, will be in a few months.

Until then .. we’re enjoying the sunshine, and counting our blessings at every opportunity.

This is Iris today .. showing me her “heart”:

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Breathing Clearly

17 Wednesday Jul 2013

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We were back up at Doernbecher today for Iris’ follow up bronchoscopy with Dr. Milczuk. Her procedure was fairly quick (good sign) and Dr. Milczuk was smiling as he approached me afterward (very good sign). He showed me images of her airway on his laptop and I wish I had the photos to post because the difference in the before and after images is literally night vs. day.

Dr. Milczuk is pleased with her progress so Iris won’t need another bronchoscopy until September.

When we started this journey, Iris needed repairs for; pulmonary artery sling, a large ASD (atrial septal defect), and tracheal stenosis. Her ASD is repaired. Her tracheal stenosis is repaired. Her pulmonary artery sling is repaired. The only step remaining is to put a stent in her pulmonary artery because it’s tiny. Too tiny. So once she’s healed, she will have a stent put in. We don’t know the timing yet but should find out during our appointment with Dr. Armsby next week.

Iris was so hungry before her bronchoscopy today. The procedure was late morning and she wasn’t allowed to eat since last night. All she wanted was an egg. Some kids crave candy, Iris craves hard boiled eggs. Fortunately I found one at the Starbucks in the lobby and had it waiting for her when she woke up .. which helped her get through the anesthesia fog. My remarkable little warrior and her simple pleasures.

We’re very thankful for this good day.

Here is Iris before her procedure:

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Steady As She Goes

11 Thursday Jul 2013

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My father would love this title.

We are maintaining our course. Iris continues to do well, and I continue to be in awe of her recovery. She had her drain tube stitches removed on Monday and she’ll have a follow up bronchoscopy next Wednesday to assure that her reconstructed trachea is open and clear. If all goes well next Wednesday, she won’t need another bronchoscopy for 2 months. Good news since they have to put her under general anesthesia each time.

The best news so far is that Iris seems unfazed by what she’s been through, and she’s shown no apprehension to return to “the hill” for follow up appointments. That is a blessing. She’ll have plenty of questions as she gets older and gains a better understanding of what she’s been through .. and what her beautiful scar represents .. but we’re taking this day by day and surrounding her with positive energy.

We’re loosely homebound. We get out to run errands and take Solana to and from camp, but it’s important that Iris remains in a humid environment as her trachea heals so we’re home most of the time so she can receive the necessary humidity to nurture the healing process.

She’s happy and doing most of the things other 4-year-olds are doing; playing Legos, coloring and giggling to no end with her sister.

We’re so touched by your notes, calls and visits. Thank you for your love and support.

Here’s a photo of the girls from the 4th of July .. what freedom looks like to us:

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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!
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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.

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Surgery Day

28 Friday Jun 2013

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Iris is in surgery. Our day started early, but she was a trooper as she’s been throughout this journey. I was able to speak with her entire team before she went into the operating room and to say that she’s in good hands is a huge understatement. I fully believe my daughter is in the care of the best of the best today.

Her surgery is scheduled for 8 1/2 hours and fortunately they’ll be updating me along the way. My sister, niece and a dear friend are by my side for support.

I can’t thank you enough for your continued prayers and positive messages. We know that we are surrounded with love today and that He is watching over us and guiding Iris’ team.

Here’s a photo of my brave little girl right before they took her into the operating room. I know grandpa is smiling down and giving her a “thumbs up” too.
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Here We Go

21 Friday Jun 2013

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Here we go.

Iris’ surgery is scheduled for next week at Doernbecher.  Dr. Rutter is coming out from Cincinnati to perform her airway reconstruction, along with Dr. Milczuk, and Dr. Langley will repair her heart.  They estimate she will be in the hospital 10 days to two weeks and then we’ll return home for the remainder of her recovery.

So many thoughts and emotions run through me each day, but mostly I find myself feeling thankful.  Thankful to Iris’ biological parents.  Thankful for the day Iris came into our lives.  Thankful for the abundant joy my daughters fill my heart with.  Thankful for Solana’s compassion throughout this journey.  Thankful for the wonderful doctors that care for Iris.  Thankful for the support of family and friends.  Thankful for the comfort I have found in my faith.

So we enter the biggest challenge of our lives … and I am reminded;  kites rise highest against the wind.

Soar my little warrior … soar.

Thank you for your continued prayers.