February is CHD Awareness Month ~ Diagnosis

I am going to be posting CHD (Congenital Heart Defects) facts and sharing Jessica's story as a way of bringing awareness to CHD. 

Day 1 of CHD Awareness - Diagnosis:

Jessica almost died as an infant due to her undiagnosed CHDs. Miss Jess was born on 6-3-88. My labor was fast and furious! In fact, the nurse had to grab a doctor out of another room to come and catch her. lol I had a scan just two weeks prior to her birth and the technician seemed to spend quite a bit of time looking at the heart. We asked her if there was something wrong and she said no. I vaguely remember her going out of the room and then coming back with someone who looked at the scan and said that everything was ok. I was sent home and nothing more was said. After Jessica was born and sent to the nursery a doctor came in and said that she heard a heart murmur but it was most likely caused by the ductus which usually closes at birth and hadn’t closed yet. We were told "DON’T WORRY" many times but just be sure and take her to her 2 week appointment. All the concern was focused on Jessica’s polydactyly – she was born with 2 extra fingers and 1 extra toe – just like ME! We had no insurance at that time so we were given the phone number to a clinic that helps children born with different types of defects. We had no idea that we would practically live at that clinic and the hospital for several years to come. Jessica and I were sent home just 24 hours following her birth. We were told that they had done a pulse-ox test and it was low but in normal range and again to take her to her 2 week appointment.

A few days after Jessica was born she was jaundice so I took her in to see the pediatrician and was sent home with instructions to put her in the sunshine for a couple of hours each day. That pediatrician said NOTHING about a heart murmur and I was quite overwhelmed with having a 2 year old, a newborn, worrying about surgery to remove the extra digits and managing apartments while trying to recover from the delivery that I didn’t even think to mention it. A couple of days after that I went back to the hospital for breastfeeding support. Jessica was having a hard time feeding and I thought it was my fault. Granted none of the support staff were doctors but none of them seemed to notice that she was breathing hard and that was why she wasn't able to eat well. Even the day before her 2 week appointment when Karl accidentally inhaled chlorine gas when working on the pool at the apartments where we were managers and we stayed in the ER most of the day to get his O2 sats up, NOBODY, even the doctors and nurses who ooohed and awwwed over our baby girl, noticed that she was in trouble! That night Jessica would latch on and frantically try to nurse. She would pull back gasping for air and then fall into a deep sleep. She would wake up again only to repeat the previous scenario. If I hadn't already had an appointment the next day I would have taken her to the ER.

Karl was still recovering from his chlorine gas experience so I took Jessica to the appointment alone and a friend took my 2 year old son, Justen for me. When the nurse weighed her I noticed that Jess had gained 2 whole pounds so I tried to calm my nerves by telling myself that she really was gaining weight so she must be fine. That calmness was shattered when the first thing that the pediatrician (different one) asked, “Is she always this blue?” He did an exam and said that she was breathing too rapidly and that the murmur was really loud. He left the room for what seemed like forever to return and told me that Jessica had an appointment with a pediatric cardiologist in 2 hours at the hospital and for me to NOT MISS IT! The doctor, who I found out was a resident, had just done his peds cardiology rotation and told me that the PC (peds cardiologist) was a really good one and very nice.

Jessica shortly after she was born

**THE OFFICIAL DIAGNOSIS**

The Pediatric Cardiologist, Richard Donnerstein, did an exam and then had a technician do an echocardiogram. Dr. D. came in while they were doing the exam and then he brought in another doctor and yet another one. In the meantime Karl was just trying to stay awake and breathe (his lungs had been burnt out by chlorine gas the previous day). I couldn't grasp what everyone was saying or what they were looking at. Jessica had been sedated for the echo and I just looked at her wondering what was going on with my beautiful baby girl.

Dr. Donnerstein finally told me that Jessica had what they called Tetralogy of Fallot which consists of 4 defects, Pulmonary Atresia and Pulmonary Stenosis. There was absolutely NO connection between her heart and lungs that they could see. They suspected that the ductus had been open to allow some blood flow to her lungs but had recently closed causing her to be in severe congestive heart failure. They needed to do a cardiac catheterization to see exactly what was going on before doing surgery TONIGHT! We were told that Jessica may not survive the night without surgery so we needed to prepare for it immediately following the cath. 

It was about 6 pm or later when Jess was finally taken in for a cath. I didn’t know if I would ever see her again because just a few years prior my mom had needed a cath and had stopped breathing during it. Thankfully she was resuscitated and was doing well but I worried that my tiny baby who was in congestive heart failure wouldn't make it. A kind nurse took me under her wing and comforted me. I’ll always be grateful that she was there.

At about 11 pm Dr. D came and informed us that Jessica was not going to have surgery after all. They found hundreds of collaterals that were taking blood to her lungs and she was so sick that she probably wouldn't survive surgery. They had started her on heart meds and would see if they could do surgery the next day. “Go home and get some rest” is what we were told, she was “critical but stable” at that moment. My heart broke as I looked over my baby who was still sedated from the cath. She looked so sick, helpless and barely even alive. In my brain I kept hearing the words, “Jessica may not survive the night without surgery” so I was worried that she still might not make it. The nurses in the PICU reassured me that they would call me if anything happened during the night so we went home exhausted and emotional. Thankfully we only lived 10 minutes from the hospital.

Our friend kept our 2 year old son, Justen, overnight so Karl and I went home to our apartment. Inside were an empty crib and empty bassinet. We held each other and cried as our world came crashing down around us.

The following day we were told that Jessica was doing much better. The heart meds were really helping her and they wanted to postpone surgery one more day so that she could get stronger. I mentioned that I was worried that she had lost some weight and I was told that it was a good thing! She had excessive fluid from the congestive heart failure and that she needed to get rid of it in order to breathe better. I remember being floored as I realized that the 2 whole pounds that Jessica had gained (she was only 6 lbs 12 oz when she was born) was all fluid from CHF.

I also remember watching her in her hospital crib later that day and she moved in a familiar way. It surprised me because I had felt as though the baby that I dreamed about for 9 months and had taken home and loved for 2 weeks had died. That baby who I dreamed of growing up healthy who would do all the fun things I had enjoyed as a child had died. The baby I brought home from the hospital with me 2 weeks ago was gone and she had been replaced by this new baby who had a time bomb inside of her. This baby would probably die too and my heart couldn't handle that.

The next several days were a blur as my husband had to go back to work and school so I had to be at the hospital during the day with Jessica and take care of my son at night. Members of my church took turns caring for Justen so that I could be at the hospital with Jessica. The story was the same every day, “we need to wait until tomorrow to do surgery because Jessica needs to gain weight and get stronger before we do it”. On Friday the doctor asked “How would you like to take your daughter home tomorrow?” WHAT??? Up until that point I was told that Jessica would stay in the hospital until she had her surgery. Suddenly they wanted to send a little time bomb home with me? ME? The one who almost let her die? We had been told that if I had waited even just one more day to take Jessica to a doctor she would have died. Now they wanted to send her home with me? I was terrified! It didn’t help that the discharge nurse said, “If you mix these two up you will kill her” when she was going over the meds with me. Ugh! Thankfully she labelled the tiny oral syringes with tags which marked the exact amount that was needed to be given & the medication name on each syringe. She wrote down the exact times that each medication needed to be given so that I would have that to refer to.

I had a hard time grasping everything that was wrong with Jessica’s heart because I didn’t even know how a heart was supposed to work in the first place. I didn’t have time to go to the library and the internet hadn’t even been invented yet. I felt alone and helpless. Jessica spent almost as much time in the hospital as she did at home the next several months. She would catch a cold which immediately went to her lungs and she would be hospitalized fighting for her life. Poor Dr. D. must have gotten tired of drawing diagrams for me and writing down words for me to study and memorize. I’m not usually a slow learner but living on no sleep, caring for a 2 year old and a very sick baby while supporting my husband who was going to school full-time and working 2 – 3 jobs was very stressful… but I eventually started to catch on. Before too long I was explaining everything to ER doctors and drawing them diagrams!

Knowledge and experience gave me the confidence I needed to make the difficult decisions for my daughter. At first I felt like God had made a mistake by sending Jessica to me. I thought that she deserved parents who had some type of medical experience or at least had insurance, but as I sought God’s guidance I came to realize how fortunate I was to be Jessica’s mommy. I’ll forever be grateful that God had more faith in me than I had in myself.

  Jessica and her older brother, Justen

This is my religion. Mormonism: A Christ-Centered, Global Faith

My name is Nancy Jensen and I'm a "Mormon".  I'm sure you have seen those commercials on TV and sure enough, I'm one of them... and it's a good thing!   

My religion is not just something I think about on Sundays but it's a way of life for me and my family.  My son, Brandon, is serving a full-time mission for our church which is "The Church of Jesus Christ of Latter Day Saints".  Brandon is in Oregon and will come home in May of 2015.  He left on his mission on May 8th in 2013.  Yes, he will be gone for 2 whole years!  I get emails on most Mondays and I get to Skype with him on Christmas and Mother's Day.  Other than that I have to have faith that the Lord will watch over him just as I trust that the Lord is taking good care of my daughter in heaven.  Brandon is serving a mission here on earth and Jessica is serving her mission in heaven.

I hope that you will take a couple of minutes and watch this little video.  If you have any questions please leave me a message.  I love the gospel with all my heart and it has truly blessed my life.

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!
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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.
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       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.
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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.)
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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

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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
***NEWS BRIEF***
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!
THANK YOU CARLOS AND ALL THE EL TOUR BIKE  RIDERS!
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.

 

DEDICATION

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.

I miss your beautiful smile

I miss your sweet smile, my beautiful daughter Jessica. This is how I see you in my mind only without the oxygen and glasses. Smiling, dancing and helping everyone you come in contact with. Your heart was so big that it had to have CHD so it could be enlarged to contain only a portion of the love you had to give. I can only imagine how much more you do every day for others now that your broken mortal heart is no longer holding you back. Fly free my sweet girl, until I see you again. }i{ 

Because of Him

I have decided that it's time to blog again.  My life has forever changed since the death of my beautiful daughter, Jessica. I have changed.  My grief has changed again and again.  A lot has happened since I last blogged.  My middle son, Brandon, went on a mission to Oregon last year.  It has been such a blessing for him and for us.  He is doing the Lord's work and is really enjoying his mission.  I will post photos that he has sent soon but for today I wanted to post a couple of videos about Easter and the journey that I am on right now.

Easter was two days ago and the sacrifices that our Savior made for us all have been in the front of my mind.  My aunt LaRae died on April 7th, one day after General Conference.  I love her and her family so much!  LaRae is my mom's younger sister.  LaRae and Lamon have lived 2 hours away for many years.  LaRae has a son named Todd who is Jessica's age.  It was awesome to be pregnant at the same time as my aunt.  In many ways I feel as though Todd is like one of my own sons.  He is good friends with all my three of my sons and LaRae would bring him to family functions here when my mom would come to town.  It was good to see Todd and offer support to him, his siblings and his dad, Lamon at the funeral last week.  LaRae fought a valiant fight against cancer and as her health declined it brought back memories to me of when my own daughter was dying.  During this time a dear friend's daughter is also dying.  Jessi (my friend Jen's daughter) was born with CHD, hydrocephalus, down syndrome, and more.  Jessi has been battling leukemia for the last couple of years and the chemo has damaged her already compromised heart.  Jessi is in the hospital and doesn't have much time left.  Going through this with her mom, Jen, has also been very hard for me.  

With all this disease and death so near to my heart I have had to fight flashbacks of when Jessica died.  It's something that I know I will have to deal with since I have PTSD.  When I said good bye to my dear aunt, it felt like I said good bye to my daughter all over again.  I sobbed the whole two hour trip home.  I was ready for Jessica to come back now.  I was exhausted physically and emotionally.  Three days later, on Saturday, all my family got together at my brother's house to celebrate Easter.  I had gotten some rest by then and was feeling much better.  We had a wonderful time at my brother Stuart's house and I could feel my family's love.  I knew I could push forward again.

My husband and I went to church the next day and I went home feeling the Savior's love even more.  The missionaries come to our house every Sunday and I had found a couple of videos to share with Karl, Austin and the Elders.  We were all touched by the Spirit of the Lord and I knew without a doubt that the Savior suffered and died for our sins.  He rose from the dead so that we can all live again.  I will be with my daughter, my aunt, my nephew, my cousin, my grandparents and ALL those loved ones again one day.  I have the opportunity to repent so that I can be with them for all eternity.  Knowing this brings hope to my weary heart.   

The following video is John the Beloved's witness of Jesus Christ's ministry, His suffering in the garden of Gethsemane, crucifixion and resurrection.  It is hard to see even just a portion of what Christ went through in order to pay for our sins and to die the way he did.  The brutality of it all can be overwhelming but to see Him after He was resurrected is an incredible feeling.  I hope you feel the love of our Savior while watching this video.  Sometimes I can't believe that He went through all that for ME!  He did it for you, too.   

A pair of glasses

While packing things in my living room, I found several pictures that Jessica traced (which she loved to do!) and one coloring page that she colored.  They all made me smile... but when I saw her glasses and picked them up it was completely different.  These weren't even the last pair that she wore either.  Maybe it's the fact that I rarely saw her beautiful face without her glasses on and the fact that her glasses are here and she isn't.  I had been doing pretty well for a couple of weeks and then suddenly my grief hit me like ton of bricks.  It caught me completely by surprise.  I expect to miss her more around her birthday, angel day and on the holidays but this came on suddenly and without warning.  I let my guard down and that's when it struck.  

Grief is a fickle thing.  It has a life of it's own.  It can rear it's ugly head at any time.   The only thing you can do is take it one day at a time.  There is no timeline for it doesn't go by a calendar.  "Time heals all wounds" is a myth.  Time can help soften the pain but it won't fill that empty space in your heart.  The only thing that will fill that hole is when we are with our loved ones again in heaven.  Until then we must pace ourselves.  We mustn't feel rushed to "get over it".  We shouldn't listen to people who think we are "stuck in our grief".

I received some good advice from my uncle who buried his son 15 years ago.  He said, "Fill your time doing good things."  I love that.  Doing my arts and crafts has been very therapeutic for me but since I started volunteering at the LDS Family History Center I have felt like I have a new purpose in life.  I am serving others in a new way and it does my heart good to do so.  I love being a wife and mother.  I will always be those things.

It's been hard because for 22 years I was a caregiver to a specially-abled, medically fragile child.  It took a lot of energy just to keep her alive and as free from pain as possible.  She required so much emotional support that many nights I felt completely spent when I finally climbed into bed (many times as the sun was coming up).  I do not regret putting my heart and soul into my CHD child and my other 3 children.  I've lived to care for all 4 of them and love each of them with all my heart.  The whole time I was growing up all I ever wanted to be was a wife & mother.  I always wanted to have a lot of little children to play with and care for.   Occasionally the thought of being an empty-nester entered my mind but I would quickly shove it away thinking that I would deal with it when it happened.  I was fortunate that my beautiful girl was a "little girl" her whole life.  She never knew the evils of the world.  She was always innocent and as happy as she could be.  Her world revolved around Barbies, fairy tales, Harry Potter, Lord of the Rings and Pokemon.  The worst thing she could think of that someone could do was smoking.  She knew smoking was bad.  She brought joy to everyone around her and radiated love.  Suddenly all of that magic came to an end.  I wasn't "Jessica's Mom" anymore.  I wasn't a caregiver of a special-needs child anymore either.  I had retired from the hardest - yet best- job in the world.  And I retired in the worst way - by the death of my child.

Grieving - two years later

It's still so hard to believe that my "baby girl" is gone.  I still feel as though she is in her bedroom waiting for me to go attend to her.  The past several years she spent most of her time in her room, on her hospital bed, hanging out, playing her games, watching tv, drawing her sweet drawings and writing her stories.  Of course she didn't stay in her room for too long... she thought she needed to go and find me. Since my husband built me a craft room I've spent a good part of my time in there so Jessica would come and find me.  Every 5 minutes.  LOL  I've been adjusting to not having someone interrupt me every 5 minutes while working on a project.  I knew I would miss her coming in to talk to me and I do.  I cherish the memories of her hanging out with me and us working on cards or other projects together whether it's been in my craft room or on her bedroom.  I cherish the time I had with her.

Jessica and me making a card for Grandma's birthday.

 Jessica working hard on her project.  

Notice her Barbie castle in the background.

I had no idea that it would still be this hard two years after she died.   Oh, what I wouldn't give to have her here to make just one more card with me.   

I sang the song "Because You Loved Me" (by Celin Dion) at a church talent show.  We took the picture below at that event.

 I dedicated the song to Jessica.  It was almost as if this song was written about us.  I was her eyes when she couldn't see, her voice when she couldn't speak.... but she saw the best there was in me and gave me faith because she believed...

  I am everything I am because she loved me.  

I miss you my beautiful angel Jess.  I was so very blessed to have you in my life and to be able to take care of you for so long.  You taught me how to have a voice.  You taught me how to be strong when I was weak.  You taught me how to push forward when I wanted to give up.  You taught me how to look for the good in everyone and every situation.  You taught me to cherish the good times and smile through the bad.  But most of all,

  You taught me how to love as Christ does - to love completely and unconditionally.   

Thank you, my beautiful girl.  Mommy Loves You.

The Story of Christmas & Silly Socks

This is a post I wrote in the fall of 2000.  The updates are below the Christmas Socks Story.  
To read more about Jessica's CHDs (Congenital Heart Defects) click here and here. To learn more about Jessica's 5 heart surgeries please click here.  

CHRISTMAS SOCKS

We are wearing or carrying Christmas socks this year with the faith and prayer that Jessica 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 placed a pair of Christmas socks onto Becca's small feet with the faith that she would survive to see many more Christmases. Becca miraculously recovered. Another year, a young 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 (an online support group through CHIN).  And so the tradition of wearing Christmas Socks as a visual form of love, support and prayers was born.

I came online in the fall of 2000 looking for a support group that I

 could join so I could offer support to other families.  After posting an introduction about Jessica's status of being inoperable and declining in health, a lot of families began to reach out to us.  I went online to offer support and in return I received more love and support than I ever imagined!  People around the world have started wearing Christmas socks in support of our Jessica this year. We have been so amazed by the love and support we have received from all around the world. We invite you to either wear or carry Christmas socks right along with us.  My family will all be together for this wonderful holiday and we pray that Jessica can enjoy this Christmas since she is terminally ill and her health is deteriorating quickly.

UPDATES:
Within a couple of months of my first post about Jessica on pdheart 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 Hanukkah 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.
Jessica and Mommy with a floral arrangement sent to Jessica from a CHD family.

Here's just a few cards and letters Jessica received in the mail.  

  

Three generations.  Grandma Julie Taylor, Mom (me) and Jessica

back = Me; L-R = Aunt Mandy, Jessica and Aunt Karen

Wearing Christmas socks:  L-R

Aunt Alice (only one foot in photo), Aunt Mandy, Jessica (purple pants), Aunt Karen and me

Oma (grandma) Jensen with Jessica

pictured: Aunt Alice, Justen, Opa and Oma Jensen, Jessica and Marcus

Our family photo for Christmas 2000

Miss Jess after a haircut.  She LOVED it!

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.  I knew her health had been deteriorating for a long time but it was hard to hear that it was time for hospice again.  By the end of July Jessica was very ill and she completely stopped eating by August 1st.  During that time a lot of people pulled out the Christmas and Silly socks in Jessica's honor.  As Jessica continued to fade, more and more people were wearing their Silly Socks in her honor.  They even started an event on Facebook.  They had a special day of prayer and wearing Silly Socks for Jessica.  

Jessica, Renee (Jessica's best home-health aide) and I wore Christmas/Silly Socks when the facebook group wore them.  I'm on the left wearing two different socks, Jessica is the one with the purple pants in the center and Renee is on the right. 

Jessica passed away on October 4th, 2010 with her loving parents by her side.  She continues to be an inspiration to many.  She wasn't expected to survive childhood and yet she lived to be an adult.  She lived 10 more years after my first post about Christmas socks.  I know that all those people praying for her and pulling for her had something to do with it.  That support held us up through some very difficult times.  Words can't describe what that support means to me.  I continue to feel that love and support today.

I would like to continue the tradition of wearing Silly Socks in Jessica's memory to show love and support to all CHD kids and adults. 
Join our little group on FACEBOOK: Silly Socks 4 CHD