Thanksgiving Message, Written by Jeanne Shields

Lauren at CHONY pre-transplant

I will admit that I did not truly understand or appreciate the meaning of Thanksgiving before this year.   For me, Thanksgiving was about finding the perfect turkey, scouring the pages of Bon Appetite for the best side dishes, eating dinner with those I loved, saying a blessing over the meal, and then bracing for the holiday gift buying rush.

It is a life altering experience to have an 8 yr old child in the  ICU on cardiac and respiratory life support awaiting a heart transplant.  While she was held in a drug induced coma, I had many days and nights to reflect on how we lived our life.  It is so easy to get caught up in the hustle/bustle of the day.  I realized I had let many things slide through the cracks.   My career was important and I loved it but it secretly put a wedge between me and my family. I was caught in the desire to succeed.  In an instant, as my daughter’s health went from perfect to failing, the perks that went with the career suddenly meant nothing.  All that mannered was the health of the little girl whose face peeked out from behind the blanket. I realized I had not spent enough time with her.  I realized even though my son excelled in school and swimming, he still needed his mom and was so worried about his sister.  The things that I had worked so hard to acquire meant nothing, indeed, I wished I had none of it, it was truly not important at all.

Our children’s pediatrician had said to me many times that the most important thing in life is your health.  How true is this?  I wrote constantly about the days spent in the hospital.  I journaled almost every day. I think this entry sums things up….

March 2, 2009…….

I am waiting.  I know it is close. Her heart must arrive soon.  I only wish I knew when.  I think to myself maybe if I knew, I would be able to feel a little better right now.  I need to be strong for her and when she says, “I want to go home mommy”, I could melt.  I want to cry out with her and say, “Yes, me too!” instead   I reassure her…over and over…”soon, soon, soon”.

When she’s settled and calm, I look out at the city and think about some of the many things that I miss….

The dog, barking like crazy when someone comes to the door.
Looking out the window and seeing the deer eat the hosta plants in the back yard.
The sound of the alarm clock.
The way the bed feels when I first lay down and the mattress feels cold.
Watching the TV at night in my bed…for 5 minutes…before falling asleep.
Toasting a bagel.
Hearing the sound of a lawn mower on a Saturday morning real early.
Looking through the mail at the end of the day.
Sitting at the kitchen counter with the kids eating guacamole.
Shopping at the supermarket.
Planning a meal…and cooking it…and eating it!
A bathroom that I can step on the floor with bare feet.
A place at night that, when ready for bed, can be made dark and quiet.
A morning where I can sit up in bed and feel at peace and well rested.

These things that I missed are truly some of the things in life to be thankful for.  They are the type of things that we easily take for granted.  They are the small things.  What our family has also learned is gratitude of our friends, neighbors and complete strangers.  We learned that the people around us truly make us who we are. They are the invisible arms that hold you up when you feel you can’t stand anymore.  Through our situation I have seen such wonderful acts of kindness that I can’t help but feel hopeful for our future.   Our family has vowed to pay our gratitude forward in anyway we can.  I fear we could spend the rest of our lives doing so and never repay the deeds of those that sent love and encouragement.

For us, Thanksgiving has new meaning.  We will still enjoy our dinner with loved ones, but we will celebrate life and love, be thankful for those that have touched our lives and pause to take in the simplicity of the meaning of the day…  unending gratitude for all things, big and small.

How our story begins

In April of 2008 our journey began.  It was the week before Lauren’s 8th birthday.  Lauren was becoming increasingly tired.  I also noticed that her abdomen was a bit distended.  I had no idea that these symptoms would continue to worsen as the days went on.  On April 15th, two days after her birthday, she was admitted into Westchester Medical Center.  At the time they did not know what was wrong.  What they did know was that there  was not only fluid in her stomach, it was in her lungs, rib cage and surrounded her heart.  Lauren was in the midst of heart failure.

This was hard for us to understand.  You see, our family for the most part, was always healthy.  We hardly kept Tylenol in the house.  T hear that our normally active and healthy child had heart failure was a shock to say the least.

We transferred Lauren to Morgan Stanley Children’s Hospital on April 20th, 2008, after we were told that Lauren had cardiomyopathy.  We were hearing great things about the hospital and wanted to give Lauren the best chance to get better.  Lauren stayed at Columbia for 3 months while she was given high doses of steroids to try to heal her heart.  They made no promises of how it would turn out.  We were told one-third of the cases get better, one-third stays the same, and one-third gets worse.  There was no telling where it was that she would end up.  Of course, we all wanted her to be in the one-third that got better but honestly, her heart had gotten a little stronger over the three months to the point where if it stayed the same, she would be able to live a functioning life.  That would have been ok, too.

Lauren did enjoy some time at home.  She took lots of medication and visited Columbia for check ups every 3-4 weeks.  I noticed at Christmas that she did not seem well.  She was starting to get sick in the mornings before school.  Many mornings she would make it to school only to get there and get sick in the nurse’s office.  On January 9th, 2009, the school nurse called me to say that Lauren was very sick and needed to be picked up.  I could hear panic in her voice.  When I got to the school Lauren looked as white as a ghost.  I took her immediately to Columbia to get checked.  When the doctor looked at her he confirmed that her heart failure had returned.  She needed to be admitted.

She was managed initially with IV steroid medication again.  This time, however, they were not working.  Lauren was getting worse by the day.  On February 3rd, Lauren was put on the Heart Transplant wait list with the highest status.  Lauren needed a new heart.  The days waiting seemed so long.  Lauren was getting weaker and was constantly getting sick.  At one point she sat with a basin on her lap and told me that she wished her new heart would come because she did not think that her old heart was “going to make it”.

Her instincts were correct.  On March 5th, she needed ot be placed on cardiac and respiratory life support.  Her heart was not going to be able to wait.  During the time she was on cardiac support (Bi-Vad) she was held in a drug induced coma.  These were very hard times for our family.  It was particularly difficult for our son Brandon was is 14 years old.  Lauren did not handle the Bi-Vad machine very well.  She continually bled and needed transfusion after transfusion so she did not bleed to death.  On the morning of March 18th we were preparing for an exploratory heart surgery to try to stop the bleeding.  At 3 pm that same day we received word that Lauren’s donor had finally been found.  Lauren would get her heart…in the nick of time.

On the morning of March 19th Lauren came off the elevator from her transplant surgery and looked so beautiful.  Her face and arms had a warm pink color that I was not used to seeding.  We were having our girl back finally.  My husband, son and I were delighted.

It took days for Lauren to wake up after they stopped the sedation.  She remained on respiratory support and kidney dialysis for days.  Sometime during this time she suffered a stroke.  We did not know this had happened until after she woke up and had seizures two weeks later.  The combination of life support, malnutrition, and stroke made her extremely weak.  She needs lots of physical therapy.

We spent two weeks at Blythdale Children’s Hospital in Valhalla for rehabilitation before coming home.  Lauren currently goes to out-patient therapy at Helen Hayes Hospital three days a week.  When she first came home, she could not stand, walk or lift her arms above her head.  She worked all summer on physical therapy.  When she wasn’t at Helen Hayes she was at Morgan Stanley Children’s Hospital having clinic visits.  Currently, she goes every three weeks for check ups and has a biopsy monthly.  We are blessed that her new heart shows no signs of rejection.