Red Tie

In 2014 the Children's Heart Foundation held their first Red Tie Ball, even though Lucy was in the hospital at the time, we were able to attend.  I fell in the love with the event for a few reason:

1. Obviously.....raising money for CHD research.  Without this funding, advancements that have helped children like Lucy live past their first birthday and some into adulthood would not be possible.
2. A night out with my husband.  Anyone with children will tell you they can put strain on a marriage.  When you add a chronic illness and A LOT of time spent apart due to splitting time at the hospital that strain can multiply.  So "nights out" however infrequent are so important
3. Honoring those in the medical field that have had an impact on our lives.  I think sometimes in the wake of critical illness, the doctors, nurse practitioners and nurses take a back to seat to ups and downs of this journey.  The Red Tie Ball is a perfect setting to celebrate them.

The past two years, Lucy's doctor's have been recognized.  Her surgeon, Dr. Ilbawi and her cardiologist, Dr Husayni.  This year, Sarah, a nurse practitioner in the PSHU was honored with the Heart of Gold Award and I was humbled to be chosen to introduce her.  Her impact is beyond words, but I tried hard to encompass how much she means to our family.

Here is what I said:

Roughly four years ago, my husband and I stepped into Advocate Children’s hospital for the first time.  Unbeknownst to us, this hospital would become our second home.  Our daughter, Lucy was diagnosed Hypoplastic Left Heart Syndrome and she has done nothing by the book.  At one of our first appointments, I remember asking about recovery time, little did I know those numbers would never apply to us.  Lucy made us wait two months in the hospital before she was ready for her Norwood.  A routine catherization turned into an extra surgery and this summer after her Fontan she made us go back to the operating room to fenestrate, TWICE.  We have spent a good amount of time in the hospital, so it’s no surprise that the staff also became our family.

I met Sarah in 2014, during our first inpatient stay with Lucy.  While we didn’t have a lot of interaction, I have one memory of her from that time. We are standing in bed 6, quickly approaching 90 days in the hospital.  Lucy was technically not critical, but she cried a lot which was keeping us in the ICU.   We were discussing a move to the floor and Sarah looked at me and said,

"We would send Lucy down to the floor, but they will call up every time she cries.   If you want Lucy to move down there, you’ll have to move into the hospital."

Sounds like a dare, right?  Over the summer I had the opportunity to get to know Sarah.  What sounded like a dare, was just the truth.  My daughter was going to need someone to be with her 24 -7 and Sarah knew that.

Her brutal honesty coupled with her wit and humor help to soften the blow of the reality that is CHD.  It’s what kept me grounded over our 100 day hospital stay. It’s what put a smile on my face at least once a day.  How do you tell a mom whose been bedside for 60 days, there’s no way you’ll be out of the hospital in the next month and still make her smile.  That is Sarah.

Aside from her humor, her knowledge and ability to explain all things medical to a parent that is just trying to survive is impeccable.   Sarah spent countless hours in Lucy’s room discussing all of her issues, the approach and alternatives, medication and their impact, reviewing x-rays until I was comfortable in my understanding.  I often get complimented on how much I understand, and that is a credit to Sarah.

All these characteristics make Sarah an amazing nurse practitioner, but what truly makes her heart gold is her passion for her kids.  She is a fierce protector and advocate of her patients.  She has protected Lucy through and through, and she has stood in when I couldn’t be in the room……two trips placing NJ tubes, a bedside upper GI, an ENT scope and the removal of five chest tubes at the same time.  Lucy has some serious anxiety when it comes to the hospital.  But every time we go for an appointment or labs, one of the first things she says is ‘where’s my new friend Sarah?” and that is proof that Sarah’s impact far extends the hospital room.

I am honored to present this award to Sarah because from a parent and patient perspective she truly exemplifies a heart of gold.

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 As I saw Sarah surrounded by families and colleagues at this event, it is clear she is respected, admired and loved.  I am truly grateful for her knowledge, her input, her humor and her friendship.