But I don’t hate this day.  I never have.  Growing up I saw it as a day to celebrate my amazing mother.  After Abby was born, my perspective on the day changed drastically.  I was made a mother by a beautiful little baby girl with black curly hair and big blue round eyes and she was nearly perfect, except for her broken heart.  I have never experienced a day of motherhood in which I did not feel blessed beyond measure to have whatever time I was granted with my daughter.  That feeling extends to my five little boys, even though they have healthy hearts, my experience with Abby has taught me that every life is a treasure and every mother should not take that life for granted.  I have experienced moments in which Abby’s very life hung in the balance.  Every shallow breath was measured and every heart beat, broken and tired, was counted.  Ever since I was a mother, Mother’s Day has been a beautiful reminder to me to cherish every moment with my children I had been given.

Down this path of the broken hearted, I have met other mothers who hate this day.  They dread it year after year after year.  They hide away from the commercialism and the general joy of a day that for them brings nothing but pain.  They sorrow over the children they dreamed of who never were.  Or maybe their arms remain painfully empty while yearning for the child that once filled that place with warmth and joy.  Either way, I can only imagine the anguish that a day like Mother’s Day must bring to their heart.  I have cried with them and for them and tried to let them know I understood why they hated this day.

This Mother’s Day, I would be lying if I didn’t admit that I thought of Abby’s donor’s mom numerous times.  This Mother’s Day would be the first with empty arms.  This would be the first that a child was missing when the kids showed up with burnt toast and watery eggs.  This would be the first that a handmade card was not ecstatically delivered with a gleaming smile.  This would be the first that THAT giggling, happy child would not be there to throw arms around her neck and tell her, “Happy Mother’s Day!”  This will most likely be the first of many to come that she lays down her head at night, and cries to sleep over her broken mother’s heart that has a hole in it that that child once filled.

And yet, it was the first Mother’s Day ever that I celebrated with a child with a whole heart.  My first without a broken hearted girl.  It was exactly one month ago today that Abby’s donor’s mom made a decision that saved Abby’s life.  So this Mother’s Day, I honor her, and the thousands of other mothers like her.  Mothers who know in their heart that they do not want any mother to go through the pain they must suffer, ever, and so they choose to give a gift that will hopefully prevent another mother from experiencing such a loss.  They empathize, even in their time of personal anguish, with others enough to say yes when the doctors ask if she would donate her child’s organs. 

I stand in awe of all donor mothers and your understanding of words so many of us read in the cards and hear about from pulpits on this day.  Words such as LOVE, CHARITY, SACRIFICE, COMPASSION, COMFORT, NURTURING, CARING, BEAUTY, and AMAZING are all captured in that one act.  You are the mothers I have thought about this Mother’s Day.  Thank You.  Thank you for teaching me about these words in your pure example.  Thank you for saving my daughter’s life.  Thank you for helping to heal my daughter’s perfect broken heart.

Abby was also having terrible issues with insomnia at this time.  The hospital, her aching muscles and scoliosis, and her reaction to new medicines was really making sleep a near impossibility for her.  It was during one of these restless nights where we were up every hour or so dealing with these problems that I had a dream.  In my dream it was nearing the 12th hour–and by that I mean that Abby’s anti-rejection medicines need to be taken strictly 12 hours apart as part of keeping rejection of the new heart at bay from breaking through the medicine’s defenses.  It was literally minutes from the 12th hour in my dream and I was frantically trying to get Abby her medicines.  The only problem was that they were all mixed into this HUGE bowl of Skittles!  I hope you all laughed…because I woke up laughing, but also a bit flustered.  You see, in the hospital someone else was in charge of getting Abby the right meds at the right time and the right doses, but subconciously I knew that once we went home this would be my responsibility.  In a house of eight, with five of those being little boys under the age of 9, you can imagine how hectic our house can get.  I was really fearful of keeping all of these medicines straight.

A few days later we were beginning our discharge instructional teachings.  After a heart transplant, these teachings and discharge instructions take a while.  They spread them out over a couple days.  One of the requirements was that we had to have our pharmacy fill all of Abby’s prescriptions and bring them to the hospital so Emily, the Transplant Nurse Coordinator, could go over every medicine, make sure the dosage was correct, and make sure we understood how and when to administer it.  I stayed at the hospital with Abby while Justin went to fill the prescriptions.  He came back to the hospital with two large green sacks filled to the brim with prescription medicines.  Although we had discussed all these medicines numerous times with different people on Abby’s transplant team, and although she had been getting these in the hospital already, seeing them all in sacks in Justin’s hands really gave me a short bout of panic. 

This sounds silly…dreams of pills in Skittles because I am so fearful of getting everthing straight and a near anxiety attack at seeing the bags of medicine…but let me show you why:

That is sixteen different medications for those of you keeping track.  The pill box helps us keep track of all of them at the right times.

Abby’s daily pill intake looks like this!  These pills are what are keeping her heat beating.  These pills are what are keeping her body from rejecting that heart.  These pills keep her body from attacking the heart.  These pills also keep her blood pressure in check since she was having problems with high blood pressure in the hospital.  These pills replace her body with precious nutrients that the anti-rejection meds strip from her.  These pills help her body get rid of excess fluid build up.  These pills help her non-existent immune system fight off bacterial, viral, and fungal infections since her body can’t do that on its own right now.  These pills are Abby’s lifeline right now.  Getting them to her is imperative.   These medicines need a very precise amount in Abby’s system, thus the strict 12 hour regimen, to keep all her systems functioning properly.  If an hour or two go by when the meds are wearing off in her system breakthrough rejection can occur.  Our daily schedule revolve around these pills right now.

So, although my reactions to these medicines may be funny and a bit extreme, I think given the importance they play in Abby’s life right now, you can understand my anxiety over getting them to her and getting them to her just right.

We also are getting used to AM and PM rituals that include taking Abby’s blood pressure, temperature and heart rate and recording them, as these can often indicate problems that warrant immediate calls to the nurse coordinator.  Luckily, Abby has been steady and sure so far.  Additionally, if Abby goes outside, she must use suncscreen on every part of her skin that is showing and wear sunglasses, as she is at an increased risk for skin cancer now.  And lastly, when Abby goes to clinic visits, she must wear a mask to help prevent her from catching anything. 

Our new regimen is a bit crazy…but getting easier the more we do it.  Some of the pills Abby will be able to taper off over the next few months.  Abby’s body was slow to kick in at first but now, her Prograf levels are high so she has already been able to remove three pills of the handful she takes every day.  Eventually, she will only require 5-6 twice a day at exact intervals.  Until then, we are grateful that these medicines are around and that the last ten years have seen a dramatic improvement and understanding in how these drugs can be used to help these transplanted hearts work for their new recipients!

Dr. Kaza came out after Abby’s heart transplant to let us know how things went and that Abby was stable and looking good.  We talked for a bit and my need to know finally got the better of me.  I asked if after seeing Abby’s old heart, they may know what had caused Abby’s heart failure.  He explained that Abby’s coronary arteries, like many children with congenital heart defects, were malformed.  She has extra arteries, small arteries, and arteries that twist and turn in a very complicated manner.  During Abby’s very first Tetralogy of Fallot repair, her surgeon, Dr. DiRusso, had a difficult time placing the transannular patch to relieve her pulmonary stenosis because of her copmlicated coronary arteries.  The patch pushed her heart up into an unusual position.  As the scar tissue grew it continued to pull her heart into a strange and unnatural position.  Ten years later, when Abby needed a new pulmonary valve, the scar tissue had occluded her complicated coronary artery system.  The transannular patch that was used during her valve replacement was laid directly on top of her Left Anterior Descending (LAD) coronary artery, which was hidden by scar tissue.  The valve which was placed was as large as the surgeon could possibly go, which is a very common practice for valve replacements in children, as it prevents multiple surgeries as the patient outgrows it.  The patch pushing down on the LAD and the large valve pushing in on the LAD made a partial occlusion.  As the scar tissue began to grow around the stitches of the new valve, it completely closed off the LAD–and the blood flow to Abby’s left ventricle.

Dr. Kaza told me he would take the blame…but that is NOT what I wanted.  I did not care what caused the problem.  All Abby’s surgeons acted in her best interest.  Dr. DiRusso worked with what he had and saved her life in the face of less than optimal circumstances.  Dr. Kaza, who has operated on Abby every time other than her first, is a skilled surgeon who acted in a manner concurrent with current practices.  I absolutely do not blame anyone for circumstances they couldn’t have possibly forseen.  Abby’s heart and coronary artery anomalies all set up the perfect storm.  I have never looked to lay blame.  What I have done, is wanted knowledge and understanding.  I hope that some one else may benefit from it.

Obviously nothing would have changed Abby’s outcome.  But, had I heard a story like hers, I might have done something different.  After searching on Google, I discovered that left ventricular heart failure has been noted, very infrequently, but at times it has happened after pulmonary valve replacements.  Abby’s LAD damage would have happened no matter what.  Her first surgery had to be done.  Her valve replacement had to be done.  BUT, had I asked for more frequent follow up for the year following her valve replacement, we might have caught her LAD occlusion much earlier.  Knowing what I know now, I would encourage all of you who need pulmonary valve replacements to request more frequent follow up appointments for 12 months after the replacement.  Catching her heart failure earlier, may have prevented the need for a transplant.  Her LAD occlusion very likely could have been treated and managed.

Abby’s heart transplant has been as smooth as possible so far.  But the road ahead is long.  She is on a strict regimen of 15 different medicines to regulate heart rate, blood pressure, stomach acids, suppression of the immune system, steroids, blood thinners…and more.  We take her pulse, blood pressure, and temp twice daily to watch for rejection.  She has two clinic appointments a week and weekly biopsy’s of her heart for the next while.  This regimen will be weaned to something less rigid over time but Abby’s future is very uncertain.  So far, Abby has done amazingly well with her new heart, but the road ahead is certainly not easy nor guaranteed.  If I could have avoided it, I would in a heartbeat.

Knowledge is power…and I hope that in some future case, where a pulmonary valve replacement is a necessity, someone remembers Abby’s story.  I hope that someone requests more frequent follow ups for their TOF child after valve replacement because of Abby’s experience.  I hope that maybe a surgeon or cardiologist might remember Abby’s story and choose to check their patients more frequently following certain types of open heart surgery that have the possibility of occluding the coronary arteries.  I hope that someone remembers Abby’s story and saves a perfect broken heart.

Dear Donor,

That name seems so cold and informal considering the role you now have in my life.  You saved my daughter’s life.  I’ve thought about you a thousand times in the last week.  I’ve wondered how your family is coping without you.  I know they must be missing your smile…your voice…your presence.  And yet a part of you is here, forever united, to our family.  I’ve listened to it, the gentle pulse of your strong, healthy heart, beating inside my daughter’s chest.  Your heart.  Her body.  Working together to give her life.

We know nothing about you but that your heart was a good match for our daughter.  Your name, your hobbies, your life are all unknown to us.  For now, that is okay.  For now, the jumble of emotions I have felt concerning you are all I am ready to deal with.  The gratitude, love, sorrow, guilt, and joy in my heart is all I am able to cope with…for now.

But I want to keep you close…always remembering that it is you and your amazing family that gave my daughter a chance at life.  I want to let you know how grateful we are for Abby’s gift.  I want you to know the girl whose life you saved.  I want you to know that every day you are thought of and loved and remembered by our family.  Your gift to us will never be forgotten or treated lightly.  While your moments of this earthly life were cut short, I want you to live them all with Abby.

Abby came out of a seven-and-a-half hour surgery with your heart supplying her body with what her broken heart could not.  One of the first questions Abby asked was “Do other people feel their hearts beating all the time?”  It had been so long since her heart functioned, that your strong heart overwhelmed her.  She asked a number of times if her heart was beating too fast.  She worried that it was beating better than it should.  For the first time in her life, she experienced a whole and healthy heart, pulsing with life from her fingertips to her toes.  The physical emotions were overwhelming.  It has now been seven days since her surgery, and she is just barely getting used to feeling your heart beat.

The nurse practitioner came to check on her only hours after surgery.  She was still intubated and could not talk.  The nurse began listening to Abby’s heart and Abby pointed to her ears with both fingers.  The Nurse said, “Do you want to listen to your new heart, Abby?”  Abby nodded.  The nurse practitioner put the stethoscope to Abby’s ears and Abby broke into a grin from ear to ear.  Your heartbeat brought a smile to her face.   Just hours before going in to surgery, Abby had asked to listen to her broken heart beating in her chest.  The sounds were slow and faint…and Abby knew when she heard it that her heart was very, very sick.  Your heart gave her hope.  Hope that she will live to do the things she loves.  Hope that she will one day see a show on Broadway.  Hope that she will finish middle school.  Hope for her first crush on a cute boy.  Hope that she will drive a car.  Hope that she will have days and days and days of sunrises and sunsets and hours in between to fill with the business of living.  And you will be with her every step of the way, giving her the ability to do so.

Thank you will never be enough.  It will never say what I feel in my heart.  It will never suffice for how I feel towards you and your family.  I hope to take you with us on Abby’s journey from here on out.  I hope that over time you will get to know Abby and that through my letters to you, we can come to draw closer to you.  I hope that we will have years and years to draw closer in heart and spirit.  I hope that somehow through my letters to you, I will come to know you and I will come to understand even more the ways that your heart has given me more than I will ever realize.

Thank you for giving my daughter this life.  Thank you for your perfect UN-broken heart.

Sincerely,

Nicole Wardell

Abby’s amazing class and amazing Mrs. Cameron and amazing friends and amazing family and amazing friend’s parents and amazing  community have all come together to do something amazing!  I have been so privileged to watch as this community rallied together around a cause…a cause that is my beautiful daughter.  Watching as the vision and determination and commitment of one bloomed into the vision and determination and commitment of a few more and a few more and a few more until an entire army of Abby supporters had come together to make an amazing night happen.

Abby’s medical costs will be around for the rest of her life.  She will be on expensive medicines for the rest of her life.  She will need an additional surgery on her spine for scoliosis in a year or so.  We will be driving an hour each way two or three times a week to the hospital for tests and follow ups and biopsies and caths.  These costs add up and for that reason, lots of people have come together to help us with a benefit concert and auction to ease the load these will put on our family.

Most of you know that the concert will be a fun night featuring T Minus 5!  The concert is at Ogden High School’s newly refurbished auditorium this Saturday, April 21st at 7:00 PM.  You can buy your tickets in advance at the T Minus 5 website or you can buy them at the door.  The silent auction begins at 6PM before the concert outside the auditorium.  The list of items being auctioned includes the following:

AUCTION ITEMS

Monster Quilt by the Serial Quilter

Handmade Christmas Cards & Painting

Jimmy’s Floral $20 Gift Card

1 Month of Yoga

Walker Cinema Movie Passes

X-Men Origins Wolverine DVD

Subway Sandwich Cards (six free sand.)

Crafter’s Tool Kit

Lotion

Shampoo/Conditioner

Toad’s Fun Center Gift Cards

Kitchen Kneads Cake Mixes & Gift Cards

$20 Sunsationals Gift Card

4 Free Day Passes to The Front Climbing Wall

Papa Murphy’s Gift Cards

Gift Certificate to Bliss Dress for little girl’s dress

Ogden Marathon Entrance

Frisbee, Ball, and sports bag

Leprechaun Decorations

Girl’s Dresses

Cooking Class for 2 Farmington Harmon’s

Dutch Oven Cooking Basket w/ Cook Books

Handmade sassy Headbands and Hairpins

Embroidery Art

Wallets

Moxie Girl Lap Quilt

Gourd Art

Biking Helmets

Water Bottles

2 Swim/Facility Passes Marshall White Center

Lifetime Kayak

Handmade girls Hats with embellishment

KidGrow Handmade Gardening Apron Sets

Get Away Today Disney Gift Basket

$50 Disney Coupon

Crafting Supplies

Cooking Supplies

Fresh Market $50 Gift Card

Handmade Afghan

Cake Topper

Layer by Layer $500 Wedding Cake

Layer by Layer $200 Birthday Cake

Crocheted Burp Cloths/Dish Cloths

5 Active Myotherapy Massages

Paul Cardall Book and CD and Bookmark

Vintage Cupcakes Gift Certificates

1 Month Triathalon Training

Kris’ Cuts & Styles and Cut Hut Gift Certs.

Yard Pros Yard Work—6 Man Hours

Wise Guys Gift Certificates

Great Harvest Gift Basket

4 Gift Cards for one free meal at Village Inn

$15 Gift Card Sizzler

$15 Gift Card Olive Garden

Jazz Player Jeremy Evans Signed Shoes

Wireless Mouse/Laptop Case/Lg. Bag

Babysitting Gift Certificate

Eyelash Extensions

On Location Portrait Session by Summer Green

Hawaiian Crib Quilt

Cookie Lee Jewelry

Signed Jazz Basketballs

Handpieced and Handmade triangle quilt by Joanie Dorsey

And more items are coming in!

SO, we would love your support.  The support and love from each of you that can make it to the concert means so much to us.  THANK YOU…ALL those who have helped plan, put together, donated, spread the word….and LOVED Abby!!!  We look forward to seeing those of you who can come Saturday night…and I’m working hard on trying to SKYPE Abby in…even for just a minute or two…so she can see an auditorium full of people who are there to love and support her in this journey with her new perfect heart!!

But, I will try.

April 9, 2012:  The List

On Monday we were called in to Primary Children’s Medical Center to sign the last couple pieces of paperwork so Abby could be listed with UNOS (The United Network for Organ Sharing).  This is the organization that manages The LIST.  We signed the paperwork and picked up our pager.  The Nurse Transplant Coordinator explained that she felt that Abby would have a heart very soon.  As we left the hospital with our pager I have to admit that I felt a sense of anxiety.  My chest felt heavy and the knowledge that at any moment, the pager could go off or my cell phone could ring telling me it was time was a bit overwhelming for me.  I began second guessing if this was the right decision, after all, Abby had just finished a play at the playhouse.  She was able to go to school all day and carry on with life like normal, other than being a bit tired now and then.  The rest of the day on Monday I was a nervous wreck.  I told Abby that I was having a hard time dealing with it and she tried to calm me down, reassuring me that this was the right thing to do.  Every time the phone rang I grabbed it.  Every time one of the kids toys beeped or buzzed I grabbed for the pager.  If you ever waited anxiously for an important phone call, you know exactly what I’m talking about.  That night my dreams were bizarre and my night was restless.  I kept hearing phones and pagers in my dreams.  By Tuesday morning I was worried that going on like this for too long would be unbearable.

But, Tuesday also proved to be a busy, busy day.  We had unexpected, but welcome company from out of town.  And, the reporter from the TV station and newspapers came to Abby’s school to do a news story on her.  You can see the news stories here.  We had a fun time seeing the news being made and the kids in Abby’s class were excited to be able to share the hard work they have been doing for Abby’s benefit concert and silent auction on April 21st.  By the end of the day I had completely forgotten I was anxiously awaiting a call or page.  I realized that I just needed some time to get used to it all.  By Wednesday I was back to my old ways of leaving my cell phone laying on the counter and leaving the pager laying around the house; however, at 4:15 PM I was on my way to pick up Abby’s little brother from pre-school.  It was raining lightly and the skies were gray.  I felt a distinct pit in my stomach and had a feeling.  The kind of feeling that is easy to confuse with an overactive imagination.  I felt strongly that something was going to happen…soon.  I brushed the feeling aside, thinking it was just me subconsciously trying to remind myself not to get to comfortable.  I brushed the feeling aside, but double checked to make sure my phone and pager were in my pocket.

Wednesday night I had tucked all the boys in bed and had tucked Abby in bed. Although she didn’t want to go to bed…she told me she didn’t think she could fall asleep.  I made her though–wanting to have some time to myself and knowing she needed some badly needed rest.   Our house guests had left earlier that day and I KNEW I should clean the house and get the laundry caught up.  But I didn’t.  I went downstairs to catch up on the GLEE I had missed earlier in the week.  Abby showed up shortly after I turned the TV on and sat down on the couch.  I sensed she wanted to talk.  She was a bit upset and worried.  She asked what would happen if her heart came in the middle of the night and the surgeon was too tired to operate.  I tried to explain that surgeons are “trained” to operate regardless of the circumstances or time of day or night.  She was really worried about it though…visibly upset.  She then explained that she felt really strongly her heart would come in the middle of the night…THAT night.  I was a little shaken.  Now we both had had “that feeling.”  I reassured her the best I could, and pulled her next to me so we could finished watching Glee together.  She didn’t get to bed until 11:00 PM, but some things are more important than bed time…and Wednesday night with Abby was one of those things.

April 12, 2012: The Call

We made it through Wednesday night with no phone call or page.  Thursday morning was a gray, overcast day with a light drizzle falling.  The morning was our usual hectic getting ready for school routine.  Abby got a bit of a late start after our late night of movies but was eaten, showered, dressed and ready to walk out the door at 8:10 AM.  She was just getting her backpack when the house phone rang.  I picked it up and looked at it and the display read Primary Children’s.  My heart skipped a beat and I knew immediately that this was the call we had felt a premonition of the night before.  I answered and Emily, the transplant nurse coordinator said, “Hello!  We have a heart for Abby.”

I felt fear, anticipation, hope, sorrow, anxiety…and a whole range of emotions at once.  The family heard my conversation with Emily about what would  happen now, when we had to be there, and what we should do and they began gathering around.  Abby’s brothers were scared and cried over the thought of Abby having another open heart surgery.  We had about two hours to be at the hospital.  My house was a complete, disorderly mess with laundry piled up, dishes in the sink and at the table, all the little boys in pajamas, and barely any food in the fridge since that day was shopping day.  But all that would have to wait.

Abby was calm as could be.  She asked us to call her class so she could let them know.  We made a few calls to family members and neighbors.  Thirty minutes later, after help arrived for the boys, we were in the car and driving to Primary Children’s Medical Center for Abby’s new heart.

April 12-13 2012: The Miracle

We got to Primary’s at 10:00 AM and quickly found that we were still in the waiting mode.  There was no certainty as to when Abby’s new heart would arrive.  At first we were planning on some time in the late afternoon.  While we were waiting we were given a room on the floor and we watched TV, facebooked, played games…and tried to pass the time.  Abby had labs done and an IV started.  By 4:00 in the afternoon we were still waiting with no word on time.  Abby had been on food restrictions since we left that morning and was starting to get hungry and a bit restless.  We were told that it wouldn’t be until at least 10:00 PM…maybe later.  We had visits from some fellow heart moms and Abby’s grandparents who drove down from Montana who were at the hospital and by 10:00 PM Abby was tired and hungry.  We encouraged her to get some sleep and by about 11:00 she was sleeping and Justin and I decided to do the same.  We were told that they were having a hard time placing the lungs from the donor and we still didn’t have a definite time.

I slept on and off, drifting in and out of strange dreams.  I couldn’t help but think about the donor family.  Somewhere a family was saying good-bye to a special child.  They had decided to donate their organs and were now waiting…just like we were.  But instead of waiting for new life, they were waiting to watch their child leave this life.  The thought was heartbreaking.  And the thought that in their moment of anguish and grief, they made a choice that would give Abby a chance at life touched me and  I came to understand more wholly the meaning of words that most people only casually use…words such as sacrifice and charity.

At 4:30 AM Abby’s nurse came in and told us it was time to go.  Abby’s heart was on its way here and she was due in the OR room to get prepped.  We walked down the hallway and Abby looked up at me and said, “I’m a little bit nervous now.”  She’s amazing, isn’t she?  It was the only time she showed any bit of apprehension or fear, but even though she was nervous, she remained calm.  We saw Dr. Kaza who told us the heart was on its way and looked like a strong heart.  We told her we would be there when she woke up and left her in the capable hands of Dr. Kaza and his team.

The operation ran smoothly, with regular updates.  At one hour in, the lines were all placed.  At three hours in she was just going on bypass.  At four hours her heart was coming out and the new heart going in.  At six hours the new heart was in and she was being taken off bypass.  Seven and a half hours later Abby was done.  Her old perfect broken heart was now removed and her new perfect heart was beating in its place.

We experienced a miracle…or at least a series of miracles, that have given us a new heart for Abby.

Her recovery is is slow but gradual.  We are experiencing the ups and downs of recovery.  A slow beating heart, missing P waves, high levels or low levels  of certain properties of the blood, some valve regurgitation…but all these are common after transplant.  All these are things that we are hopeful will clear up within the coming days or weeks.  We won’t know anything about rejection or how Abby’s body is receiving the new heart for a couple weeks.  But so far, her team seems pleased with how well the heart is functioning and how well Abby is recovering.

The days and weeks and months ahead seem a bit overwhelming.  And I have to admit a part of me just wants Abby’s old broken heart back.  The one that wasn’t failing.  The one that had repaired Tetralogy of Fallot and nothing else wrong with it.  But that wasn’t the path Abby’s heart defect would take her.  Instead we are venturing into the realm of the broken heart made whole through organ donation.

We have bright hope that her new heart will remain whole and strong for years to come.

Last week we had based a decision to attempt to go ahead with the back surgery off of the preliminary results.  The preliminary results of Abby’s exercise test were great…I mean really excellent.  Her workload was 84%!  For a girl in heart failure that is amazing; however, as Dr. E was preparing everything to present to the board yesterday, she looked closer at the full report the nurse had printed out on Abby’s test.  The rest of the numbers were not so good.  In fact, the rest of the numbers on the exercise tolerance test combined with some of the lab work results showed some very dangerous signs.  Dr. E. is fairly confident that Abby’s amazing workload number is a combination of Abby’s ridiculously nearly non-existent body mass index (BMI) and Abby’s voracious determination to conquer and overcome anything that is put in front of her.  The 84% was a false positive.  Abby’s exercise test also showed that Abby was working in the anaerobic range nearly the entire test and the other 13 or 14 little boxes with numbers on the test results that measure things I don’t understand all had dropped, significantly, since her last test in November.

After explaining all this, Dr. E. said she thinks the best course for Abby is to list her for a heart transplant.

I know we were expecting this.  I know I’ve been talking about this since October.  But, the experiences of the last few weeks had given us some hope that maybe we could put off this transplant for a few years.  To be honest, every year counts.  Every year we could have put it off is one more year Abby has her own heart and doesn’t have to worry about rejection or the new heart failing.  Every year she has her own heart is one more year I don’t have to worry about the statistics of increased chances of CAD (coronary artery disease) after transplant, or increased risks of cancer after transplant, or increased risks of catching every major and minor disease that is floating in the air, or the overwhelming knowledge that most heart transplants last 10-15 years and then, you do it all over again.

I would be lying if I didn’t admit that all this hit me.  I felt sick to my stomach.  We went from getting ready to fix Abby’s back because her heart was looking so good to needing to list…NOW.  Abby had a Make-A-Wish in the works planned for May and Dr. E. strongly suggested we don’t defer listing until after the trip.  For some reason, Abby is masking her heart failure symptoms and Dr. E. wanted me to be very clear on the fact that Abby’s heart is MUCH MUCH sicker than any of us had previously understood.  Every one of the members of the board yesterday said they would list immediately.

So, today Dr. E. is having the financial coordinator send a letter to our insurance company, since transplants have to be preauthorized.  This could take up to a week to get the approval back from them and after that Abby will be “on the list.”  This is a formality because they have already been in contact with our insurance previously and we know Abby will be covered.  But, it is important to have in place before she is listed.  Abby will be listed at a 1B, the second status level.  1A is for patients living in the hospital and basically being kept alive by intravenous drugs and machines.  1B is the next status level, critical but not living in the hospital and not on IV drugs.  In addition to being a 1B, Abby has no antibodies.  That means she is eligible for ANY heart that comes.  Because of these two things, Dr. E. feels very confident that Abby will have a new heart fairly soon after listing.

As for Abby, I told her over the phone–like a frenzied mother who has no common sense would.  We had some miscommunication yesterday and I was going to pick her up from school but she was already home thanks to a sweet friend’s mom.  I knew she had friends coming over to work on a video project so I let her know I really needed to talk to her before her friends got there.  She explained it was too late because her friends were there and then wanted to know WHY I needed to talk to her so urgently.  If you know Abby, you know she is persistent and so I told her briefly what Dr. E. had told me.  She shut right down on the phone and wouldn’t talk to me.  She said we should talk about it later.

Upon arriving home a few minutes later, Abby was surrounded by a group of girls and my mom.  She had apparently hung up the phone with me and broke down into sobbing.  My mom put her arms around Abby and explained to her friends what had happened and they gracefully took Abby into their arms and even cried with her.  Because that is the kind of friends Abby has.  They love her with a love and compassion that is well beyond their years.  They understand that sometimes there is nothing to say or nothing to do but just cry along with her. And they told her how amazing she was and reminded her that she will not be alone through all this, because they will be there to love her through this.  To those of you who were with Abby at this time of finding out she was being listed…I can’t tell you enough how grateful I will always be that you were there.  You gave her more comfort and love than this mom could have given her and you all continue to amaze me at your understanding and empathy that goes well beyond your twelve years of age.  Thank You for comforting Abby’s perfect broken heart.

This video is how I feel all over again.  The words of the song describe so perfectly all that I am feeling in regards to all this unexpected news…but I know that with the support and love of SO many of our friends and family and you, we will make it through this.

Ollie Hebb

Ollie Hebb was 1-year-old and loved to help his mom do the laundry.  Last week, Ollie fell into the washing machine and drowned.  He survived on life support for a day and then was taken off.  This story makes me cry.  I can’t imagine being Ollie’s sweet parents and losing the life of a precious child, especially in such a tragic accident.  In their moment of utter heartbreak and despair–a moment  I can’t being to imagine–the Hebb’s made a decision.  It probably took a nod of a head and a signature on some paperwork.  Ollie became an organ donor before life support machines were turned off.  Ollie’s organs were harvested and sent to other pediatric patients whose lives were slowly ebbing away, giving them a new chance at life.  The entire scenario is overwhelming to me.  I think of making this decision in a time of such heartache and I stand in awe of Ollie’s parents.  I think of the children and their parents who received his organs and their feelings of overwhelming gratitude and sense of loss they must surely feel for the beautiful child who gave theirs a chance at life.

This month is National Donate Life Month.  Donate Life America is running a 2012 campaign to register 20 Million Donors in 2012.  The stats are as follows:

14,144 organ donations were made in 2011.

As of March 31, 2012, pediatric patients waiting for transplants was 1,801.

113,115 total patients are waiting for organ transplants.

(Above statistics from www.donatelife.org.)

Interestingly enough, in writing this post I hopped over to UNOS (United Network for Organ Sharing) and as of today at 6:14 PM, 113,717 patients are listed as currently waiting with 72,615 of those patients ACTIVE candidates.

In 2010, UNOS reports that approximately 300 children receive heart transplants each year.

Those are just numbers and statistics to most.  But to the 113,000 patients waiting, those stats are the difference between life and death.  To the 300 pediatric cardiac patients who received heart transplants last year, those numbers are an answer to prayers and hopes.  Abby does not fit into any of these statistics–YET.  Today, Abby’s heart is working enough that listing is down the road a ways.  Once her heart deteriorates enough, she will be one of the nearly 73,000 patients actively waiting for a new organ.  Recently Donate Life was proud to announce that they reached 100 Million registered donors.  100 Million Americans have registered to donate their organs.  BUT,if patients are still dying each year while waiting for organs, more donors are needed.

I know this choice is personal.  I gladly checked the organ donor box on my driver’s license application the day I turned sixteen.  I thought nothing of it.  Now that we have Abby and have come to love and know so many others who have benefited from organ donation, I have really taken the time to think about organ donation.  If my child were laying on a hospital table, being kept alive by life support with no chance of recovery, would I have been strong enough before learning about Abby’s heart failure to choose to donate?  I HOPE I would.  No one can say for certain because I was never in that position.  Children can’t register to donate organs.  Only a parent or legal guardian can make the choice to donate organs.  I have discussed this issue in length with my husband, who has been honest and open enough with me to say the decision would be hard for him, and I think if most parents think about making that kind of decision, it would be a very difficult one to make, especially during such a terribly emotional time.

So, to the nearly 300 of you who chose to donate your child’s heart to another child who desperately needed it last year and in previous years I want to say thank you.  To the 300 who will choose to donate hearts this year during a time of unimaginable pain–I stand in awe of you.  The words sound wholly inadequate, but they are said from the depths of a mother’s heart.  Some time in the next couple years, Abby will be waiting for a decision like you have already made.  In the face of a parent’s greatest tragedy, all her hope will hang on that one decision.  Ollie’s parents made it last week, and today, a small child is recovering in a hospital with Ollie’s heart giving them LIFE.

Please consider becoming a donor.  Please help spread the word about organ donation.  In the midst of terrible tragedy, an amazing legacy of heroism, selflessness, and inspiration can live on through the miracle of organ donation.  When all other options have been exhausted, this is the last ray of hope for many children born with perfect broken hearts.

STEVE SMITH/Special to the Standard-Examiner Abby Wardell (third from left, back row) participates with other cast members in "Joseph and the Amazing Technicolor Dreamcoat" at the Terrace Plaza Playhouse

Standard Examiner reporter, Jamie Lampros, featured a wonderful article about Abby and her heart defect.  You can read the article here, or you can read the same article on the Standard Examiner blog here.  We were so pleased with the response we have received so far from this article and were even more thrilled that Abby was able to discuss important issues surrounding heart defects including pushing for mandatory pulse ox testing, detailing some of the frustrations of growing up with a heart defect, and giving hope and encouragement to others in the same situation.  Lampros called Abby “Amazing” and I couldn’t agree more!  While our last surprise media experience turned out to be somewhat discouraging, this story on Abby was wonderful.  I hope that if you have a minute, you drop Lampros a line and let her know how much we appreciate her work for Abby and for all our broken hearted warriors.  You can leave a comment on the story to thank her for her work.  Let’s show her as much support as we gave Mr. Trentelman.

And, speaking of amazing Abby…yesterday’s round of tests and hospital visits proved she deserves this title.  Abby’s heart function has shown an increase!  The biventricular pacing, or CRT (cardiac resynchronization therapy) worked, along with the medicine regimen, at least enough to give Abby’s heart a boost.  Very few people are candidates for biventricular pacing, and even fewer pediatric patients.  The hopes of having Abby’s heart improve with this type of pacemaker therapy was a long shot.  At a great website, CHFpatients.com, the reasoning surrounding this kind of treatment for heart failure is discussed.  Very rarely is the left ventricle paced in conjunction with the right ventricle.  This kind of treatment is somewhat new and is mostly only used in adult populations.  Abby’s team felt it was worth a shot for her as she met all the requirements for CRT.  And that shot worked…at least enough.

Enough that Dr. Everitt felt that she was willing to present Abby to the board next week to see if Abby could have her scoliosis surgery before transplantation.  This scoliosis surgery has really given us a lot of frustration towards how to best treat Abby’s heart failure.  Without the scoliosis surgery looming over our heads, we would be content to let Abby go on like she is now until she showed more severe signs of heart failure whether that was in two weeks, two months, or two years.  Only then would she be listed.  Abby’s curved back, which is now progressing at a rapid pace, was a problem though.  Her back surgery needed to be done within a year or 18 months at the most, otherwise the progression of her spinal curve would be severe enough that treatment would be nearly impossible.  Listing Abby for a heart transplant before her heart had completely given out was the only option we thought we had so Abby could get her back fixed.  Having the back surgery after transplant was not a great option either, as the bodies ability to heal and fight of infection would be greatly diminished due to the transplant medicines.

Now, if the board of surgeons and cardiologists approve it, Abby will be able to have her scoliosis surgery before transplant.  The surgery will be risky…very risky.  A special team of cardiac anesthesiologists, cardiac nurses, and OR staff who have worked with heart patients before will be in the operating room monitoring every breath and every beat and every vital sign.  Of course, an ECMO machine will be on hand in case of serious complications.  We know the risks are high, but we have no good or safe way of proceeding.  A choice has to be made and we, along with her cardiologists, feel this is the best way to move forward.

Abby’s road still leads to transplant, but not before her scoliosis surgery, both of which are HUGE hurdles this little fighter has to make it over.  And to be honest, I feel that she will.  This direction feels right to me.  This way of moving forward has made the most sense to me since learning about Abby’s heart failure in October.  So, our good news includes a major scoliosis surgery most likely taking place in the next six months, but for our perfect broken hearted girl, the looming surgery is hard to gear up for, but one she knows needs to be done, and she has taken the news like she always does, with the grace and optimism of an angel on earth.

These questions and others like them are inevitably part of raising a child with a heart defect like Tetralogy of Fallot.  The opinions are varied.  While some parents feel no restrictions are best, just like the doctor ordered, others have a hard time feeling good in giving their heart child free reign to exercise or engage in physical activities.  The fears of how strenuous exercise will affect an already fragile heart weigh heavily on their mind.  As children with heart defects get older, these complications will be multiplied as the child themselves will begin to ask to play sports or be involved in activities that are physical in nature.  I went in search for the answers for myself.  I want to know what is best for my TOF girl.  The answers I found may be of interest to you too.

We have been told by Abby’s cardiologist since she was very young that she “will limit herself” and her body will “know when she needs to rest.”  If Abby wanted to play soccer or swim or run was all determined by her body cues.  If she was tired, she should rest.  If she was out of breath, she should stop exerting.  This sounds nice.  No restrictions is the gist.  But let’s put this to the test.  Abby has been a VERY driven and determined child since birth.  If something  was hard to do, Abby was determined to conquer.  Not only is Abby a go-getter, but her small size has always bothered her.  She is a full head and shoulders smaller than all her friends and has always made up for being small with a larger than life zest for life.  Abby has been known to push the limits from the time she was in school.  Keeping up with peers and living a full life is something that Abby strives for.  If they are playing a game in PE and she feels winded or tired, she will attempt to push through it.  That’s what you learn in PE isn’t it?  Push through the pain.  Just give us ten more.  Don’t stop now.  No pain no gain.  So, in a world where she is taught that to gain anything, you must push through even when you want to stop, coupled with her determination, the cardiologist’s advice that she will know when to stop does us no good. I would have to go elsewhere to find specific recommendations for Abby’s physical exertion.

I found a wealth of information in an article titled “Phsyical Activity Recommendations for Adolescents with Repaired Tetralogy of Fallot: Review of the Literature and Guidelines for Practitioners.”  The article was written by two APRN’s, Rachel Caplan and Patricia Jackson Allen.  Right of the bat the article states that “adolescents living with Tetralogy of Fallot have not been provided clear, understandable information regarding their congenital heart defect (CHD) and its implications on their ability to participate in physical activities” (191).  The article cites many studies in which parents and patients both admit that they are unclear on if they can participate and how much exertion is okay.  It has been found that parents often misinterpret information given by physicians and pass this misinformation on to the CHD patient.  As many as 39% of TOF parents restrict their child’s activity levels unnecessarily due to misinformation.

The article stated that all parents should have a  deep understanding of their child’s heart defect.  Let me repeat, a DEEP UNDERSTANDING.  Not a basic synopsis.  Only 28% of parents could correctly identify their child’s specific heart condition in a diagram.  Why would this be important?  In order for a parent to make an  informed decision as to which physical activities are appropriate for their CHD child, they need to know how the heart is affected and what effects will in turn be placed on the body.  Does your child’s CHD affect the right ventricle or left ventricle?  Are the arteries affected?  Are the pulmonary functions affected?  Is blood flow, blood pressure, or blood volume increased or decreased as a result of your child’s CHD?  Do they have valve problems?  Regurgitation problems?  The answers to all these questions will directly affect which activities and sports are appropriate and encouraged for your child.  Since you don’t always get a clear cut answer as to which physical activities are okay from the doctors, you need to know to act for yourself.  You can’t rely on what other parents have let their child do, what Shaun White is able to accomplish, or what your child wants to do, because every case is different, and there is no one size fits all answer.

The article stated that in 2007 the American College of Cardiology Foundation at the 36th Bethesda Conference came to a consensus that “children with TOF who have had a complete TOF repair who have normal or near-normal right heart pressure, have mild or no right ventricular volume overload, have no evidence of a significant residual shunt, and whose ambulatory electrocardiogram or exercise test shows no atrial or ventricular tachyarrhythmia abnormality can participate in all intensities of static and dynamic sports” (197).  The article highly recommends that ALL heart patients who will be participating in sports or physcial activities have a complete exam which includes exercise tolerance tests, pulmonary function tests, EKG’s, ECHO, X-Ray and physical exam by a cardiologist and/or sports cardiologist before participating, making sure the cardiologist knows that the visit is specifically to determine how much physical exercise is appropriate for the patient.

The physical guidelines given by the foundation suggested 30-60 minutes of daily moderate to vigorous activity for all TOF patients with repaired TOF and NO other complications.  That being said, the article also stresses that “individuals who have significant residual abnormalities after corrective TOF surgery, and who also have a history of syncope and/or arrhythmias, may be at risk for sudden death” (193) when participating in sports.  TOF with pulmonary regurgitation, artery anomalies, or other surgical complications should refrain from strenuous activities and stick to low intensity sports and activities.  It is also noted that TOF patients should be careful when playing contact sports and/or sports in which fainting may cause severe bodily injury.  Tables are included in the article which include guidelines and recommended sports for TOF patients.  The article is a PDF file and will not allow me to cut and paste but I would LOVE to email you the tables if you would like!  It is also important that you have regular follow-up visits with your cardiologist and keep them informed of the CHD child’s activity level.

It is important to understand that NO other parent or CHD patient can decide for you how stringent you should be on physical activity for your child.  Evidence has shown that exercise is valuable for heart patients but every heart patient is different.  The only people who should decide on what activity levels are appropriate for your child are you and your child’s doctor.  Each patient is different and your child may have limitations mine does not just as mine may have circumstances that prevent physical exertion that your child is free from.  This blog post is meant only as information I found interesting and hopefully helpful.  I am not advising one way or the other if your child should participate in sports and/or which sports they should be allowed in.  The article  helped me clarify my understanding of the importance of physical activity for my TOF child, relay some fears of how physical activity might affect her,  as well as the importance of understanding her broken heart and the implications that broken heart has for Abby’s physical well being.

Caplan, Rachel & Patricia Jackson Allen.  “Physical Activity Recommendations for Adolescents with Repaired Tetralogy of Fallot: Review of the Literature and Guidelines for Practitioners.”   Pediatric Nursing, Jul-Aug 2011  37(4): 191-9.  Retrieved from Academic Search Premiere.  21 Mar 2012.  Web.