Monday, August 11, 2014

Jessica's story: CHD, Silly Socks & more

Jessica's Story:

(note: I wrote this story in 2000 and added the few updates at the bottom.  These are not current updates but are for the dates mentioned) 

When Jessica was 2 weeks old she was diagnosed with multiple 
heart defects. Some of these are: 

1. Ventricular Septal Defect (VSD), 2. Oerriding Aorta, 3. Hypoplastic Pulmonary Arteries & Pulmonary Stenosis, 4. Right Ventricular Hypertrophy, 5. Pulmonary Atresia  6. Pulmonary Branch Stenosis, 7. Nonconfluent Pulmonary Artery Branches and  8. MAPCAS: Major Aortopulmonany Collateral Arteries (MAPCAs) 

To read more about these CHDs (Congenital Heart Defects) please click here:  Tetralogy of Fallot - Jessica Style. 

Jessica was in congestive heart failure and was hospitalized. Jessica spent much of her life in and out of the hospital. Jessica was struggling to gain weight and every little cold or illness would send her into the hospital. She was very "blue" and would cough and choke a lot. Jessica was diagnosed with GE Reflux and put on medication for that. Finally the pediatric cardiologists felt that she needed surgery when she was 5 months old, even though she only weighed 10lbs.  Jessica suffered a stroke with her first heart surgery and her right side was weakened. The stroke was in the speech area of the brain and by 18 months of age, it was obvious that she was having extreme difficulty with speech and was trying desperately to communicate.   Our home-bound teacher recommended sign language. We worked with the teacher and speech pathologist and only 6 months later Jessica could sign over 80 words! Slowly the speech came.... being facilitated by the sign language.  The neurologist didn't think that Jessica would ever be able to speak well enough to be understood because how delayed her speech was, so she was extremely surprised when Jessica beat the odds and learned to talk VERY well!  Jessica was also delayed in other areas due to the stroke. She didn't sit up until she was about a year old or walk until she was two. Her heart and body were weak, but her spirit was not! She was determined to do what she wanted to do!

When Jessica was 3 years old her shunt needed to be replaced.  When they were opening her sternum they accidentally cut the shunt.  She hemorrhaged out and it took them 8 minutes to get her onto the heart/lung machine.  Since the shunt took blood to the lungs and that had been compromised, she went that long without getting oxygen to her brain.  Jessica started having seizures the day after surgery which were different than the seizures than the ones she had with her first surgery.  We were to find out later that she had suffered a 2nd stroke which affected four new areas of the brain.  
It seemed like something would come up every day and then she would stabilized.  The real threat came four days after surgery when we were called to the hospital early in the morning by an infectious disease specialist who told us that Jessica had contracted a blood infection that could cause all her tissue to leak and could be fatal.  He told us that they had started her on antibiotics but they weren't sure they had caught it in time.  Shortly after that call we received another call from the hospital, this time from the cardiovascular surgeon who told us that Jessica was hemorrhaging again.  She had lost 1/3 of her blood volume in four hours.  He said that she had another bleeder and that he would most likely have to do surgery to find it.  He didn't expect her to make it through another surgery.  He felt that if they did surgery, all her scar tissue would start bleeding and she wouldn't make it through.  He asked us to come to the hospital to spend her last hours with her.  He said that they wouldn't operate for a few more hours but he did want us to come in.

After we got the phone calls my husband and I were crushed.  My husband became angry (which is normal) and went to take a shower to get ready to go.  I fell to my knees and prayed.  Before the surgery Karl (my husband) and I had prayed and had been able to say "thy will be done" but we didn't expect to have this happen so far out from surgery.  I prayed that I would be able to accept His will and that my baby girl wouldn't suffer.  As I was praying I felt the warmth of the Spirit of the Lord engulf me and I knew that I would be able to say "good bye" to my little girl when the Spirit prompted me to.  I called our bishop and he met us at the hospital.  All this happened on a Sunday so he left all his meetings to be with us.  Karl's parents were able to take our older son, Justen who was 5 years old at the time.

The nurses found a room where we could talk privately with our bishop.  The nurses knew us well by that point and really cared about our family.  I was anxious to go in to see Jessica so Karl and the bishop spoke together without me.  
Jessica was in a medically induced coma in order to prevent her from moving and causing herself to bleed more.  There was hardly even one spot available on her body for me to touch due to all the tubes, wires and tape.  As I tried to talk to her it didn't feel like she was even there.  She was swollen from the infection and it was really hard to see her like that.  I did not tell her good bye because I didn't feel the Spirit prompting me to do so.  When Karl and the bishop were done talking Karl told me that he was ready to say "Thy will be done".  We went into her room and spent some time with her.  I told my dear husband that if they had to take her into surgery I would tell her that it was ok to go to heaven even if I didn't feel inspired to do so.  The cardiovascular surgeon was keeping a close eye on her.  He told us that they were doing blood work every 15 minutes.  They had an OR waiting for them but he wasn't going to take her to surgery until she "forced their hand".  Little by little her bleeding was slowing down.  After several hours had gone by he came in to talk to us and said that it didn't make sense... he said that the blood count was normal and that her blood pressure was fine too.  He said that there was no way possible that a bleeder would stop on it's own or that she had THAT much blood hiding in her body that would suddenly drain out.  The blood was not old blood and she was such a little girl that the chest x-rays they kept doing would have revealed a pocket of blood that big.  He said, "A power far greater than ours saved your daughter today.  We did nothing.  We stood around and watched a miracle."
We were shocked, relieved and so very blessed to see such a miracle in our lives.  We knew that Lord had heard our prayers but it wasn't until both Karl and I were able to completely and honestly say, "Thy will be done" did the miracle come.  When I said that I thought that my baby girl would die... who knew that God's will was that she LIVE?
10 days after surgery she finally came off the ventilator. To our dismay she was blind and her left side was paralyzed. We thought to ourselves, what have we done!  We felt guilty for taking her in for surgery but of course without it she would definitely die as she was getting very "blue".   She seemed to be quite fussy and wasn't taking any comfort from us being with her.  When we were at home eating dinner Karl said, "Jessica is blind!  That's why she was acting the way she was."  We started talking about it and I called the nurses in the ICU.  I had them go in and do their own little unofficial tests and they called back to say that they thought we were right.  She didn't seem to be able to see anything and they put in a request for the specialists to come and examine her the next day.

So on the 11th day after surgery I was finally able to hold my little girl.  The neuro-opthamologist had done his assessment and said that she was blind and she had gaze paralysis.  Her eyes were both only able to look right and go up and down a little bit but she could not track anything nor turn her eyes to her left.  If she heard something on her left-hand side she turned her whole head.  
After several days of waiting, tests, and many prayers, Jessica received her eyesight enough to be able to see her mommy and daddy. She was finally calm and could take comfort in them. She finally came home from the hospital a couple of weeks later a very sick little girl who had to learn to sit up, stand, walk and talk all over again. But this awesome, strong-willed child showed everyone what faith and hard work can do. She did learn to do all those things again. I always said that her motto is: "I'm not going to let a little thing like heart surgery and a stroke get me down!"
Jessica after 3rd heart surgery, 1993 ~ Dr. Donnerstein &
 Dr. Goldberg with Jessica.

Jessica was 5 years old when she needed her 3rd heart surgery. Jessica recovered much better this time and 7 months later had surgery #4. The surgeon came out of surgery very discouraged and told us that "there was nothing more that they could do". Jessica's pulmonary arteries had not been growing. Within a few months of that surgery Jessica was becoming incredibly "blue" and was needing oxygen more and more. Finally a catheterization showed that the conduit which had been placed between her right ventricle and pulmonary artery was allowing a lot of blood to flow away from her lungs and into the heart. Surgery was needed again to close off the conduit to give Jessica more time and improve her quality of life. Jessica did much better this surgery, largely because the incision was only a few inches long. Jessica came home 5 days after surgery. 
It has been 5 years since the last surgery and Jessica has enjoyed 
this time with her family. Jessica uses a motorized wheelchair in 
order to conserve energy and is on continuous oxygen now. Jessica 
has surprised many people by being much more energetic than expected. 
Jessica has had to decrease the hours she spends at school so she won't 
fatigue too much. In fact, most days she stays at home and rests. 
She is continually fighting congestive heart failure, but remains the happiest young lady I know. Jessica enjoys drawing and writing stories. Jessica recently got an art set and spends hours drawing and being creative. She also loves to read short stories and play her game-boy. Some of the games she has are Pokemon Silver, Yellow, Blue & Red.  I bet you can you guess that she likes Pokemon!


Christmas Socks 

We are wearing or carrying Christmas Socks this year with the faith and prayer that she can be healthy and strong to enjoy this Christmas. This tradition was started with a little girl, Becca, who was critically ill following a heart surgery. A loving nurse gave Becca a pair of Christmas socks with the faith that she would survive to see many more Christmases. Becca did recover. Another year, a girl, Jessica Joy was having serious complications following a heart surgery and Becca's mother sent Jessica Joy's mother some Christmas socks as a token of her prayers and faith that she would recover. Jessica Joy also made a miraculous recovery. This story was told to an online support group called pdheart. Many people around the world have started wearing Christmas socks in support of this new tradition for our Jessica this year. We have been so amazed by the love and support we have received from many people all over the world. We invite you to either wear or carry Christmas socks right along with us. Jessica's mother's family will all be together for this wonderful holiday and we pray that she can enjoy this Christmas since she is terminally ill and her health is deteriorating quickly.

UPDATE ~ January 2001 

Jessica had a wonderful Christmas.  Most of the family were able to come, but the cousins that live in Utah were very sick and not able to make it for Christmas. They are planning on coming in the Spring for Easter. We are hoping that we will all be well enough to enjoy their visit when they come. Now that Christmas is over, our next goal is Spring. Several people have asked, "What type of socks should we wear now?  Easter socks?  Spring socks?" so they started wearing several types of socks for Jessica. Some people have been wearing heart socks or valentine's socks in Jessica's honor and in honor of CHD (Congenital Heart Disease) Awareness Day.  Over time people were wearing all types of silly socks in honor of Jessica - as an outward sign of their love for her and their hopes & prayers that she would continue to live and be happy.


CHD Awareness Day

Many states, including Arizona have signed proclamations making Feb. 14, 2001 officially CHD Awareness Day .  Many of us feel it appropriate to wear heart socks in honor of Jessica as well as the millions of others affected by this birth defect... which affects 1 in every 100 children born in the US.
(This proclamation signing has continued since then and is a yearly thing we are doing to raise awareness for CHD and to honor those affected by it.)


Update ~ September 2001

Jessica is doing rather well considering what her prognosis is. She is only going to school about twice a week, for half days, but she is still enjoying her life. Jessica's youngest brother, Austin, just started all day kindergarten and Jessica gets to spend more time alone with mom while the brothers are all at school.  Jessica continues to play her game-boy and of course, is still a huge Pokemon fan. Jessica also has liked the Power Rangers since she was 4 years old. Jessica says she wants to be a Power Ranger actor when she gets older. She will be the "Purple Princess Power Ranger" in a wheelchair and on oxygen.  She has a vivid imagination! Jessica remains very positive  and hopeful. Jessica's Uncle Stuart Aunt Clarissa are expecting their first baby next month. Jess can hardly contain her excitement. Mom & Jessica went to a baby shower for Aunt Clarissa.  Jessica really had a great time. Jessica's Aunt Karen and Uncle John are expecting their fourth boy in January. Jessica just loves all the new baby cousins! She has a lot of good  things to look forward to, and hopefully with her great attitude  and all the hopes and prayers and all our family and friends wearing Christmas socks, she will be here for this coming Christmas as well as the arrival of all her new cousins.

Jessica in 2001

Jessica with Mommy in 2001


Support Groups

We are involved in another local support group called Tu Nidito for families with children with critical or terminal illnesses. These children have all types of illness including cancer and even rare diseases. We have social workers help our families and we help each other through difficult times as well as joyous ones. Click here for more information on Tu Nidito


There is a bike race that is here called "El Tour de Tucson" on Nov. 17. All the money raised benefits "Tu Nidito".  An employee at Jessica's school, Carlos Leon, is going to race in Jessica's name. His goal is to raise $500 for "Tu Nidito" and he will be riding 111 miles! That's right! One hundred & eleven miles!


The Hershey Kissmobile visited Jessica's school and we had the opportunity to take a photo of Jessica and Carlos while it was there.

Several families from Tu Nidito got together to cheer on the bike riders.  Jessica's class made a huge sign which we taped to our van so he could see it as he rode by.

A dear friend of mine, Cathy Schweinberg, made this quilt block in honor of Jessica. Cathy volunteers for The Congenital Heart Defect Awareness Quilt Project.  Jessica's block in on quilt #18.  To go to the CHD Quilt site click here

The online support group that started the Christmas socks tradition for Jessica is called PDHeart. This group is world wide and also has many resources to help families with chd. They are a part of TCHIN (The Congenital Heart Information Network) which is Created and maintained by Mona Barmash. If your life has been affected by chd and want to join one of the e-mail support groups, including pdheart, Click Here.  You can also learn more about TCHIN, CHD and the children affected by it by  click on the image below.



Our church had a talent show and I dedicated the song, "Because You Loved Me" and sang it to Jessica.  Jessica has touched so many lives! As her mother, I have learned the true meaning of unconditional love. Jessica taught me to never give up and that God is truly in charge. Have faith in HIM and you can see miracles. I want to dedicate the song "BECAUSE YOU LOVED ME" sung by Celine Dion. Jessica may have needed my strength when she was weak, my voice when she couldn't speak, me to be her eyes when she couldn't see, but I'm everything I am because she loved me.

Jessica drew this picture of herself as an angel in 2001.

***I am working on writing the rest of Jessica's story.  Sadly Jessica passed away on October 4th, 2010 at the age of 22.  It was 10 years from the time we started wearing Christmas socks (which turned into any type of silly socks) until she passed away.  We are so very grateful to the CHD community and many family members & friends who have supported us along the way.  We continue to hold Jess close in our hearts and offer support to other families who are living with CHD or are bereaving the loss of a loved one.  I hope to have the rest of her amazing story of love, hope and faith soon.  Thank you so much for your visit.  Each and every comment is greatly appreciated.***
Within a couple of months there were about 12 countries and well over 2,000 people wearing Christmas socks in Jessica's honor.  It was a way for them to show their love and support as well as a visual way to show that they were praying for her.  One Jewish lady asked if she could wear Hanuka socks instead of Christmas socks and I said OF COURSE!!!  I received emails from other people of other faiths and they wore whatever type socks that made them think of Jessica. A local news station found out about the Christmas socks and they did an interview with our family.  It was October and people were wearing Christmas socks!   

Some people sent gifts, cards and even Christmas socks to Jessica from several different countries all over the world.  It was so fun for her to receive those gifts.  It touched our hearts that so many people would reach out to a terminally ill child.

After the holidays I started getting emails asking what type of socks they should wear next?  Valentine's Day socks, Easter socks, Spring socks, polka dotted, striped, bright colored and even socks with butterflies on them were being worn instead of Christmas socks. There were so many people who loved Jessica and wanted to show their love, support and prayers.

Over the years Jessica's health was yo-yoing and she came close to death numerous times.  In 2004 she started having lung bleeds which was extremely scary.  After some testing it was determined that there wasn't anything they could do for the lung bleeds and we were advised to put her into a home-hospice program.  Any one of the lung bleeds could be fatal and she was having them almost daily.  Jessica was admitted into hospice in July of 2004.  The hospice nurse went with me to an appointment with the pulmonologist and she recommended using morphine daily.  She said that the hospice had seen some improvement with other patients when they used a small amount of morphine daily.  To our amazement the morphine worked and Jessica was released (kicked out - lol) from hospice the summer of 2005.  

  Jessica developed Ischemia of the Bowels which is a terminal disease if surgery isn't possible - and Jessica's was inoperable.  That condition is extremely painful and was so hard on her. On top of that Jessica's heart was in congestive heart failure and she was having up to 10,000 PVCs (premature ventricular contractions = arrhythmia) every day.  Through all this Jessica kept up her happy demeanor and continued to bless our lives with laughter, smiles and hugs.

In 2010 Jessica's ischemic bowels got to the point to where she wasn't able to eat much at all.  She was hospitalized the week after her 22nd birthday in June (of 2010) for congestive heart failure.  She was retaining weight all over and we could definitely see it in her face and arms. We also had a visit from a pain specialist who recommended that we place Jessica in a hospice/palliative care program.  Jessica was admitted into EverCare (Now OPTUM)'s wonderful program in July of 2010.  The nurse became very concerned about Jessica not being able to eat much and she mentioned that Jess was showing signs of malnutrition.  On July 27th (one day before my son, Brandon's 17th birthday) Karl and I took Jessica to see the GI doctor.  Her pain was so bad, we didn't know what to do for her.  The doctor took Karl and I into another room away from Jessica so that he could tell us that Jess was in starvation mode.  He encouraged us to give her protein so that would help her gut work.  We asked him how much time we had left and he didn't know.  He said that if Jessica were to start vomiting or pooping blood to let him know ASAP.  He said she would only have a short amount of time left after that.  We also discussed that she may get to the point to where she couldn't eat anything at all.  He nodded when Karl said that usually people don't survive past 21 days without food.  

I started to tear up and Karl embraced me.  Dr. G. also teared up as he expressed that he wished he could do more.  He told us to take our time as we both started to cry.  The nurse came in and placed her arm on mine as I dried my tears.  How could I go back into the room and face my beautiful daughter knowing that she had started the dying process.  We hoped that we could delay this process for at least a few months but deep down inside I knew it was coming faster than I wanted it to.  I had known for almost a year that it was coming soon and I had done everything I could to get doctors to listen to me and help her pain.  Hearing the doctor confirm what I already knew was devastating.  Karl and I tried to put on our fake happy faces (which we had learned how to do years before and had become accustomed to doing) and went to Jessica.  She asked what we were talking about and I said something to the effect that it wasn't anything for her to worry about and asked if she was ready to go home. By this time I had also gotten used to fibbing to her so as not to get her anxiety going.  She suffered such severe anxiety, there was no need for her to suffer through that on top of everything else that was going on.

* ~ * ~ * ~ * ~   

~ Editing in progress ~

This last part has been the hardest for me to write. Jessica passed away on October 4, 2010 just over 2 months after our visit with her GI doctor.  Our hearts are forever changed since the death of our beautiful girl but we are so very thankful for the opportunity to be her parents.  I don't know what I did right before I was born in order to be Jessica's mommy but I'm soooo very glad she came to me, blessed my life in so very many ways and taught me how to love as the Savior loves us: Pure unconditional love.