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!  

Tuesday, February 17, 2015

February is CHD Awareness Month ~ Heart Surgeries

Jessica following her 2nd heart surgery age 3

This photo was taken after Jessica's 2nd heart surgery. My 5 year old son was scared to go into the PICU to see her and the only reason they allowed him in was because he was going to stay with my parents and I didn't want to send him away without him even seeing his sister and knowing that she hadn't died. A nurse took this picture to show him before he entered the PICU so that he wouldn't be quite so scared. We brought Jessica's doll and stuffed animal and placed them around and on top of her so that he wouldn't be afraid of her incision and the tubes and wires on her chest. {Too bad we didn't know back then that he had Aspergers (autism spectrum) back then and that's why he would freak out so much when he saw his little sister with tubes and wires, etc.} This was the surgery from when she hemorrhaged, had a massive stroke, was blind and paralyzed for a while and had a blood infection. At the time of this photo Jessica had barely regained enough eyesight to focus on something for a few seconds and then her eyes would drift up to the right. She couldn't control where they were looking and we didn't know how much she could see because when she could key in on something sometimes she would cry out as if she was afraid of whatever it was she was looking at. 

Jessica following her 5th heart surgery - age 7

Jessica posing with Dr. Donnerstein and Dr. Goldberg

The first photo is after Jessica's 5th heart surgery which went VERY well.  The other photo is of Jessica posing with Dr Donnerstein (on the left) and Dr. Goldberg (one in the back).  Both of these photos were taken right before we left the hospital to go home.   Dr. D and Dr. G are two of the pediatric cardiologists who cared for her over the years. Dr. D was the one who diagnosed Jess when she was 2 weeks old and he followed her until he retired when Jessica was 20. We joked that Jessica put him into retirement from all the stress she gave him throughout those 20 years. He came to her PC visits even after he retired but he came as a friend. He was very kind and caring. He stayed at the hospital all night the night that Jess was hemorrhaging and kept going back into surgery. Once a patient is handed over to the surgeon they usually step back until the after the surgery and the patient is released but Dr. D felt as though we were family. He was a great source of support to us all those years.
I didn't take many photos of Jess when she was in the hospital, especially when she was in the PICU. It was so very hard on me that I knew I would never forget and I felt like I was invading her privacy if I took pictures of her hooked up to all the machines and monitors, so I didn't take photos... but now I wish I had. I want others to know what an amazing soul she was and what she endured. Jessica's legacy of hope and love lives on but I feel like I could have done her story more justice with more photos of her difficult times. I am thankful that I went camera-crazy and took a lot of photos of the better times because sometimes those good memories are all I have to push out the flash-backs of the bad times.
To read more about her 5 heart surgeries please follow this link:

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 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

Monday, September 01, 2014

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.