Wednesday, October 14, 2015

Silly Socks & Jess

This is a shortened version of the story that I posted online in 2012.  I posted the link to a longer version which has more photos at the end of this note as well as the link in the last sentence.  

Having felt quite alone as a CHD mom for the first 12 years of Jessica's life, I went online in 2000 to see if I could find a support group for families with children with CHD (congenital heart defects).  I found on email support group through CHIN (Children's Heart Information Network) called pdheart. I told our story of how Jessica had endured 5 heart surgeries, 2 strokes and that there wasn't anything else that could be done for her except comfort care. Jessica’s health was declining and we didn't know if she would survive until Christmas. The members on pdheart embraced us and wanted to know how they could show their support. It was a tradition on that support group to wear Christmas Socks for a child when they were going through a hard time so people all around the world started to wear Christmas Socks in Jessica's honor. The word spread like wildfire and to our amazement within a couple of months there were over 12 countries and at least 5,000 people wearing Christmas socks (or Hanukkah socks) as a way to show of their love, support and prayers. Jessica started receiving mail from all over the world as well. She LOVED the attention of course.

Christmas came and Jessica seemed to have improved a little. We enjoyed time with family and were so thankful for all the support. After Christmas was over I started receiving emails from my new-found friends asking what type of socks they should wear next! Soon Valentine's Day socks, Easter socks, Summer socks, polka-dot socks, and even toe socks were being sported around the world in hopes that Jessica would meet the next holiday and the next. After a while everyone started referring to them as "Silly Socks". 

There were many times that Jessica was at death's door and would come back to us. She had many issues including extreme heart arrhythmia, worsening congestive heart failure, bouts of nausea and worsening abdominal pain. She was diagnosed with Ischemia of the Bowels which is a very painful and terminal disease if surgery isn't possible and unfortunately for Jessica, there was nothing that could be done. In 2004 Jessica was placed in hospice due to daily lung bleeds. During that time loving people around the world were praying for and wearing their Silly Socks for Miss Jess. Jessica's hospice nurse took a shot in the dark and recommended morphine therapy to Jessica's pulmonologist and to everyone's amazement the lung bleeds STOPPED!!! 

During all of this Jessica continued to be as happy, loving and giving as she could be. Due to strokes, lack of oxygen to her body & brain (her whole life) and the diagnosis of DiGeorge, sweet Jessica never progressed beyond the level of a 7 - 8 year old. She was always our "little girl" who loved Barbies, princesses, Harry Potter, etc. 

In the summer of 2010 Jessica was nearing the end stages of heart disease and the ischemic bowel disease so we admitted her into a home hospice once again. When I announced the news to our friends on pdheart & other support groups, facebook and other social media, they once again rallied together to wear their Silly Socks for her - not for her to get better, but for her passing to be peaceful and for strength for our family. 

Our dear, sweet, beautiful Jessica Marie went to be with the Lord on October 4, 2010. TEN YEARS after the first Christmas & Silly Socks were first worn on her behalf.

I don't believe that certain socks have any particular powers but what I do believe is that God hears and answers prayers. Friends, family, church members, fellow heart families and even strangers all around the world from all walks of life, all faiths and even self-proclaimed atheists came together on behalf of one sweet, innocent, loving child. The miracle wasn't for her to be cured, but it was to bring all these wonderful people together for a good cause.  Thank you to all of you who have been such a wonderful support to us in the past and who continue to wear their Silly Socks & send messages of support.   

Every year on Jessica's birthday and angelversary we have a Silly Socks FB event where people share photos of their Silly Socks in honor of Jessica and to show their love and support for our family.  Jessica’s worst fear was that she would be forgotten.  “Oh, my dear sweet girl, how could you ever think that anyone could forget such a strong, courageous, loving child as you?”  We’ve met so many people since her death who have never met her who can still feel her legacy of love, hope and faith!  Jessica's quote, when I asked, “What would you want the world to know?” and she immediately said, “Tell everyone that I said to NEVER GIVE UP!  OK, Mommy?  You need to tell the world that I said to NEVER, EVER GIVE UP!”  NEVER give up HOPE!  NEVER give up FAITH! And NEVER, EVER give up on LOVE.

Here is the link to the original story that I posted in 2000 and edited in 2012.  It has photos from that first Christmas the socks were worn (2000).

Wearing Christmas socks:  L-R
Jessica's Aunt Alice (only one foot in photo), her Aunt Mandy, Jessica (herself -purple pants), her Aunt Karen and me - the Mom  

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 

Thank you for stopping by!

Friday, October 09, 2015

5 Year Angelversary & CCHD Conference

I hope you all will bear with me. Jessica's angelversary was on Sunday but I am still having difficulty accepting that it's been 5 years since I held my beautiful, amazing, sweet, loving daughter Angel Jess. The pain isn't as raw as it used to be and I am able to focus on other things but sometimes it feels like an eternity until I get to see her again. Since my presentation at the CCHD (Critical Congenital Heart Defects) I have felt my girl pushing me to share more of her story. There are many amazing stories that I haven't put into writing and I've been too grief-stricken to write about them but since my presentation I've realized how important it is for her story to be told. Jessica's legacy should be shared so that it can live on. She was the most brave, amazing, determined, loving, generous, miraculous "little girl" I'll ever know and I'm soooo grateful that I get to be her mom for all eternity.

I was touched by the concern of the doctors, nurses and midwives who attended and it was great to see one of Jessica's peds cardiologists again. After the presentation he told me that Jessica was a pioneer. It was because of mine & my husband's decisions to have her go through certain surgeries and procedures that many CHD children are benefiting from having them available now. Jessica was the 9th child to ever have the surgery called "Unifocalization of the Collaterals" in all of the US. At the time it was the only hope for Jessica of ever receiving her complete repair. Sadly it did not work for Jess but it is saving lives every day now. They do the surgery at a much younger age now but it wasn't available for Jess until she was 5 years old.

I also had to fight the school district for them to honor Jessica's DNR (Do Not Resuscitate) orders. After over 2 years, I was able to talk to the legal team and we came up with an agreement that DNRs would be honored if there was an Emergency Plan. Believe it or not, it came down to me that someone on the Board of Directors said, "We're not in the business of having dead children on campus". That was the reason they didn't want to honor the DNR orders. They were worried that an ambulance wouldn't take her to the hospital if they didn't start CPR. I found out that they would so that helped my case. Jessica earned the right to die peacefully. Besides, her heart was enlarged so if they started compressions it would only damage her already compromised heart and if they did mouth-to-mouth (as it was done back then) they would have to take off her oxygen so that would have been doing more damage than good. As I was telling this story I held up the original "Emergency Plan" that was the first one ever to be done in the school district. Since then both Karl and I have met people who have thanked us for setting it into place because they had children with DNR orders too.

I had the opportunity to talk to the person in charge of newborn screening in all of Arizona and I shared a flyer that was sent to me by Hazel Greig-Midlane from the UK (THANKS AGAIN!) and we are going to work together to create one to send home with every mother of a newborn baby. The flyer lists all the symptoms that a baby with CCHD - Critical Congenital Heart Defects - would have. Oh how I wish I had had one to put on my fridge to help me know that my daughter was in congestive heart failure. Jessica almost died because I didn't know she was dying. We were told numerous times that if we hadn't brought her in that day she wouldn't have survived through one more night.

This is why CHD & CCHD Awareness is so important. We need to save the lives of babies with CCHD by educating new parents about them. Far too many parents don't know the symptoms and aren't as fortunate as we were. We almost missed out on the best 22 years of our lives with Miss Jessica Marie. We are forever grateful for those years.

Many of you have told me that you miss hearing stories about Jessica and I think I am finally ready to start writing and sharing those stories. Thank you all for your continues support and love. <3 span="">

Thursday, August 13, 2015

Tetralogy of Fallot with Pulmonary Atresia - Jessica style

A friend asked me to help her as she is going to school and needed to interview someone who has experience parenting a Special Needs child.  She thought of Jessica and me and I'm so glad that I had the chance to help out.  I spent quite a bit of time on it today and am including a link about Jessica's heart surgeries so that I don't have to write all of that again.  Here is what I wrote in answer to these three questions:

1- What exactly was Jess's congenital defect?
2- How many surgeries did she have and what was done
3- How did her defect (and surgeries) affect her school and academic learning?

Jessica’s heart defects were: (I am using my own words to describe the heart defects)

1 - 4. Tetralogy of Fallot which consists of 4 heart defects:


     1. Ventricular Septal Defect (VSD): Ventricular Septal Defect (VSD), is a large hole in the septum (heart wall) between the bottom two chambers (ventricles) of her heart.

     2Overriding Aorta: The Aorta is a huge artery that takes blood from the heart to the body.  An Overriding Aorta is when that artery sits directly over the VSD and allows blood from both of the bottom two chambers to go up into the Aorta and out to the body.  A normal Aorta usually sits right on top of the Left Ventricle.  


     3Pulmonary Stenosis:  Pulmonary Stenosis is where there is narrowing in the pulmonary artery (which takes blood from the heart to the lungs to receive oxygen).  Jessica’s narrowing was as severe as it gets.  It was narrow all the way through.  To top it off Jessica’s pulmonary arteries only branched out to 1/3 of each lung. 


     4Right Ventricular Hypertrophy: Right Ventricular Hypertrophy is where the wall of the heart around the Right Ventricle (the bottom right side or chamber of the heart) is thickened because of the extra work placed on it to pump blood out to the body rather than just to the lungs.

Jessica also had the added complicated CHDs of the following:

5. Pulmonary Atresia: Pulmonary Atresia is where the pulmonary valve that comes up from the Left Ventricle to go out to the lungs is either not working, closed off or not even there at all… as in Jessica’s case.  Jessica wasn’t even both with the piece of Pulmonary Artery that hooks up to the heart; in other words, Jessica had no direct connection between her heart and lungs.  The huge VSD is what saved her life.

6. Pulmonary Branch Stenosis:  Pulmonary Branch Stenosis is where the pulmonary artery branches (where the artery divides into “branches” to take blood out to the lungs) are all very narrow.

7. Nonconfluent Pulmonary Artery Branches:  Nonconfluent Pulmonary Artery Branches means that the pulmonary artery branches don’t branch out to all parts of the lungs.  Jessica's only reached to 1/3 of each lung.  

8. MAPCAS: Major Aortopulmonany Collateral Artery:  MAPCAS: Major Aortopulmonany Collateral Artery(s) is where there are small blood vessels that come off the Aorta and take blood to the lungs that way.  The problem with these blood vessels (often just referred to as collaterals) is that they are taking blood that has the oxygenated & unoxygenated blood mixed together. 

To let you know how rare Jessica's combination of heart defects of just the two:  Pulmonary Atresia and VSD are, In a 2012 study using data from birth defects tracking systems across the United States, researchers estimated that about 1 out of every 10,000 babies is born with pulmonary atresia whereas 1 in every 100 babies are born with CHD.

I edited the image below to point out Jessica’s CHD.

 Here is the original image which includes a normal working heart, Pulmonary Atresia with Tetralogy of Fallot (lower left) and MAPCAs (lower right). 

I gave my friend Amanda the link to Jessica’s 5 heart surgeries but Jessica had quite a few other surgeries as well.  She had to have her extra 2 fingers and 1 toe removed; she had numerous cut-downs on her arteries when they were doing cardiac caths, she was kicked by a horse in 2008 and developed a massive hematoma which had to be operated on.  That left a huge gaping hole which had to be packed every day.  This took an extra amount of time to heal because Jessica’s body didn’t get enough oxygen to the cells for it to heal quickly.  Jessica endured 2 strokes during her first 2 surgeries.  That information is included in the link I sent you about her 5 heart surgeries.  Here’s that link again:

Jessica spent a good part of the first few years of her life at the hospital, doctor’s appointment, labs, going to OT, PT & Speech therapies, etc.  Most babies and young children learn as they do things.  Jessica’s heart was so enlarged and the function was so poor that she could barely sustain life at first, much less have the energy to do things.  On top of that she spent several months recovering from major surgeries which most children don’t have to do.  Jessica’s body was weak so even with the different therapies she wasn’t able to reach milestones at the same time as the healthy children her age.   She sat up on her own when she was one year old and she walked at age 2. 

Over the years her body got stronger… for a little while anyway.  She was able to learn but at her pace.  She seemed to stay on a learning curve similar to her peers except that it was lower than theirs… both physically and academically. 

We participated in a genetics study in 1989 and it turned out that Jessica had DiGeorge Syndrome.  This syndrome can cause many different learning delays as well as medical issues including CHD. 

Over the years it seemed that Jessica had leveled off at the age level of a 7 – 8 year old.  For many years she seemed to be stuck in her routines, activities she liked to do and learning new things became harder for her.  Towards the end of her life she started regressing to an even younger state especially emotionally.  Her anxieties got out of control especially at night.  She started crying more easily and getting her feelings hurt more easily too.  Her pain was way up so I’m sure that had a lot to do with it but she knew that she could die and that scared her too.  

On top of that in 2004 Jessica was placed into a home hospice because she was having lung bleeds.  Those MAPCAs (collaterals that come off the aorta and out to the lungs) were bursting and bleeding into her lungs and any one of them could have been fatal.  The hospice nurse came with me to an appointment with the pulmonologist and she (the nurse) recommended that we try morphine therapy to relax the lungs and it worked!  Jessica was kicked off of hospice because her lung bleeds had stopped.   Jessica had soooo much anxiety during that time… as she was coughing up blood she would cry out, “I’m not ready to die!” as she choked on the blood.  It took me awhile to help her calm down when it was over and then I would have to go and find my youngers sons because they were scared and were trying to comfort each other.  It was very upsetting to our whole family and went on for months where she would cough up blood daily, sometimes several times a day.

Jessica also had ischemia of the bowels which was where the blood vessels going to the gut were very narrow much like her pulmonary artery.  She also didn’t have enough oxygen in the blood that actually got to her gut so over many years her bowels were dying and becoming necrotic.  It was a slow, painful death.  It was very hard on all of us to watch her suffer through so much.

Jessica wasn’t ever able to get enough oxygen in her blood which made her look blue or even dark purple.  Of course that meant that her brain never received enough oxygen either.  Even when wearing oxygen much of Jessica’s blood wasn’t able to reach the lungs to pick up that oxygen.  The oxygen served as a relaxing agent on the pulmonary arteries to help them open up a little big to make her more comfortable. 

We will probably never know the exact reason why Jessica remained as a little girl, only able to understand things at a 7 year old level.  She had several individual things that could have caused it such as delays from being sick, strokes which affected 5 areas of her brain and lack of oxygen to her brain… all I know is that she was perfect just the way God intended for her to be.  

Monday, August 10, 2015

My Son's Mission and His Testimony

My son, Brandon, served a full-time 2-year mission for our church, The Church of Jesus Christ of Latter Day Saints, in the Oregon, Salem mission.  Brandon worked hard and saved up money after he graduated from high school so that he could serve this mission.  Yesterday he shared his testimony and how he gained it on Facebook and he gave me permission to share it as well.

"You will often hear me say that I love Oregon, that I would go back as soon as I can if I had the chance. What you don't know, is that I died in Oregon.
You see, before I left, I was an uncertain, selfish, lazy, prideful son of a gun. I knew not my Savior, and I definitely did not know his gospel. I was a punk kid who would angrily argue with anyone who I did not see eye-to-eye with.
Then, something fantastic happened. I was transferred from beautiful Prineville Oregon over to the meth capital of the Northwest, Lebanon Oregon. I was stuck with a missionary who was even more of a selfish jerk than i was, and we had nobody for us to teach. We fought often and I was never happy. One day, after a particularly hard week, we had our quarterly interviews with our Mission President.
President Samuelian, albeit short in stature, was a giant of a man. He knew his Savior, he spoke with power and authority, and he loved his missionaries dearly. The first 5 minutes of our interview, I proceeded to complain about my situation, about how I hated my companion, how I hated my area, and how I didn't understand why he put me in this situation. Then, in a way that I would become all too familiar with, President Samuelian got quiet. He was listening to the Spirit to know what he needed to say to help me.
"Elder Jensen," he began, "are you done?"
"Yeah, actually, I think so," in a matter-of-fact sort of way, I answered.
"Okay," leaning forward so he could look me right in the eye, "let me tell you something..... It's not, about, YOU."
I was stunned, confused, and unsure of what would happen next. President Samuelian proceeded to tell me how selfish I was, about how I didn't have the love for others that I needed, and that I would never be happy like this. His voice struck me to my very core, I knew what he was saying was true.
There were tears. There was weeping. Mostly (actually, entirely) coming from me. He proceeded to teach me that I needed to change, or that I would never have a successful mission.
I began to die at that point. A long process where my heart and soul would suffer more pain than I had ever thought possible. I had many companions out there, each one slowly killing me until, eventually, I perished.
I was also born in Oregon. There, though the love and sacrifice of The Lord Jesus Christ, I was able to take upon myself his name and be able to wear it upon my chest proudly. I learned of him, and I acquired the attributes I needed to become a true follower of his Gospel. The one true Gospel. Selfishness, Pride, and uncertainty gave way to Love, Humility, and Confidence. I was reborn. The process is not complete, by any standards, but I know that I am on the right path.
I died in Oregon. I was also born there too.
I encourage you all to come to know Jesus Christ and to be reborn. He is the only way to peace and lasting happiness. The only way to salvation. His arms are outstretched towards you, all you need to do is to reach for him.
Ask and ye shall receive, knock it shall be opened unto you."

Here's a few photos from his mission.

Thank you for stopping by!

Saturday, August 08, 2015

Poem for Jessica by Mandy Taylor

Poem for Jessica

By Mandy Taylor (Posted on FaceBook on August 8, 2010 at 5:00pm)
For those of you who don't know, I love poetry. I don't write or read it anymore as often as I should.

This particular piece came to me a few years ago in a dream and wouldn't let me rest until I had written it down. I sent it to Nancy shortly after I wrote it and she asked me to find a copy now. I thought I'd share it with everyone, too. Feel free to re-post or direct others here if you desire.

Always the Princess

My family began with my parents' first son
And continued because they couldn't have just one!
Mama hoped next for a beautiful girl
With celestial eyes and hair she could curl.

So I came, then, in answer to prayer,
Her very own princess, though bound to a chair.
Mom and I play, giggle, and talk
Of all things to come when with angels I'll walk.

"Heaven is perfect, my princess," Mom says
As she irons and smooths my favorite dress.
"There you'll never be lonely or gasping for breath.
You'll have more family to love even after your death."

"I like it here, Mama," I say with a tear.
"I'll miss you and Papa. I'll only know fear."
She says, "Hush, now, princess. You've been there before.
God loves you, as I do, and has blessings in store.

Let Him now enfold you as you fall asleep.
I pray every day your soul He will keep.
Fear not if tomorrow in His presence you wake.
It is one step in a journey we all someday take.

I and Papa will follow when God for us calls.
We'll find you and hug you in His glorious halls.
If He calls you and offers His heavenly rest,
Go, my sweet princess. He knows what is best."

"Our family--begun with your very first son--
Is forever! Forever!" Mom smiles, "Yes, the victory's won.
I love you, sweet princess, do not needlessly stay.
We will see you in heaven, in God's glory, one day."

Thursday, May 28, 2015

Jessica's Disney Princess on Ice Adventure

*This post was originally published on 1-12-2008 which was almost 3 years before Miss Jess passed away.  I found a video that I wanted to add to this post so it's there now.  I hope you enjoy these photos and memories.  They sure bring me comfort and joy.*
Here are some pictures of Jessica's adventure to "Disney's Princess On Ice" show that we went to in October. (I know, I'm extremely behind on posting pictures so in the next few weeks I'm going to be my attempt to catch up and post more photos!)

Our local Tu Nidito support group and the ice show planned a little surprise for the girls to meet Belle and Cinderella at the Z-mansion before the show. They also gave us 4 free tickets to see the show so Karl and Austin went with Jess and me.

(As always, click on any photo to see a larger image.)

Here is Princess Jess all dressed up and ready to go to meet the Disney princesses!

Miss Jess in the courtyard of the Z-mansion waiting for the princesses to get there.

Jess and Mom

Jessica made necklaces for the princesses and I helped her wrap them up.  Here's a little video of her giving the princesses their gifts.  The princesses were very surprised that someone was so thoughtful to make and give them gifts.


Princess Jess with Cinderella and Belle

Cinderella and Belle wrote little thank you notes to Jessica which really made Jessica's day.

Here are the autographs. One of the assistants to the Disney princesses took Jessica's notebook to get the autographs. There were too many girls and not enough time for they all to get autographs.... so the assistant sneaked the notebook to the princesses after they left the courtyard. Wasn't that nice?!

Now it's time for the show! These are some photos that I took with my own camera. Since Jessica is in a wheelchair, we were at the very top of the seating area. Fortunately we were right in the center so we still had a great view. My camera also has a zoom function so I was able to get a bunch of great photos of the show. I'm only putting up a fraction of those photos here. [I can hear you all sighing with relief!]

Aladdin and Jasmine

Aladdin carrying Jasmine as they whirl around the ice rink!

Wow... look at them skate!

This is Ariel's story now. She is in the center of the photo. Click on it to enlarge and see if you can find her.

Ariel and Flounder

Intermission fun with Austin and Jess: Daddy bought Princess Jess the Ariel wand. Yes, it lights up and even sings too!

Cinderella all ready to go to the ball

Prince Charming asks for this dance

Getting ready for a big jump - too bad I missed the jump! LOL

This time Tinkerbell is in the ball and it shoots out sparklers!

The finale: All the princes and princesses skate beautifully!

I am so glad that we had the opportunity to go to this show. Jessica really enjoyed it and still talks about it. It was nice that Austin wanted to go to spend time with his sister. Justen and Brandon didn't really care to go but we would have had to purchase their tickets (which we would have done) but they wouldn't have been able to sit with us so they stayed at home. I am so psyched that I got so many great pictures! I had better work on scrapbooking them!

Wednesday, February 25, 2015

Saying Goodbye ~ but only for a time

Continuing with CHD Awareness I am posting a photo from a very difficult time in our lives. I haven't shared it with anyone until now. This was something that I knew was going to happen from the time Angel Jess was only 6 years old but since she kept pulling through each and every major illness, heart issues, GI issues and even lung bleeds it seemed almost impossible that my worst nightmare would actually come true. Sadly, this is what CHD looks like for far too many families.

It was hard for me to share this tender moment of Karl and I saying goodbye to our beautiful daughter.  We carefully chose her pink casket with the light pink lining.  We were given a beautiful tiara for her to wear and a friend sent her a heart pillow with roses on it to place in her hands.  We didn't get a photo of that pillow which made me sad but things happened so fast. It arrived late and someone brought it in to us right before the services started.  It's ok, we truly appreciate the beautiful gift.

One day in July of 2010, out of the blue Jessica started talking about her cousin Marcus who had passed away in 2008.  She suddenly changed the subject towards herself and that she wanted to be buried in a white dress with pink flowers on it.  We had no idea that she would need it in just a few months!  When it became evident that she did not have much time left, my sister Karen sent us this beautiful white dress and I hand-sewed the pink flowers onto it. The dress is spread out on top of a Harry Potter quilt that one of Jessica's teachers (Barb) made for her. 

Here's a close up of the little pink roses and lace.

One of Jessica's e-pals, Matt (also a CHD survivor), sent her this little angel many years ago.  I pinned it onto the dress as a symbol of his love.  

I posted more photos of the flowers that we received in this post HERE.  

My husband Karl and I have been married almost 30 years (in April!).  We were married in the Mesa Arizona Temple of the Church of Jesus Christ of Latter Day Saints.  We believe in being sealed together forever in these temples where there are no "until death do we part".  Our children are sealed to us forever as well.  If you look to the left of my husband's shoulder you can see a photo of that very same temple hanging on the wall.  We did not put that photo there.  It was already on the wall.  How amazing it is to look at this photo and to see that reminder that Jessica will remain our daughter for all eternity!  

Our Mesa Arizona Temple of the Church of Jesus Christ of Latter Day Saints also has a Visitor's Center where the public can go and learn about our beliefs.  If you don't live close enough to go there and would like to know more then please visit LDS.ORG .  There's a lot of good stuff on there!  

There isn't a day that goes by that I don't think about my beautiful Angel Jessica Marie.  I miss her so very much but I am soooo thankful that she will never again suffer the pain and trauma that she endured in this life.  She was so beautiful in this dress and I envision her dancing, singing and chasing butterflies in heaven, free of all the diseases that plagued her body.  

Fly free my beautiful angel princess!