Marcus's Butterfly

Three years ago my nephew, Marcus John Russell, was laid to rest following his brave battle against brain cancer.  Jessica was recovering from surgery on her leg and had an open wound... I couldn't leave her so we held our own memorial here at our house.  Just as we were getting ready to start our memorial a butterfly got into the house and flew to the light over our table in our family room.  It fluttered around the light and then fell onto the table. 

 It opened it's wings and allowed us to get a good look at it.  Jessica was a little nervous but we were all impressed that a butterfly flew into our house after dark!  We've never had a butterfly come into our house and aren't they supposed to sleep at night?

I grabbed my camera and took pictures. Karl took the envelope with it's little passenger outside and the butterfly flew away. We had our memorial and Jessica said, "Marcus sent us that butterfly, huh Mommy?" She kept telling me that Marcus sent it. 

Karl with Austin and Brandon

During our memorial some of us wrote notes to Marcus and then we went outside. Karl built a fire and we put the messages in it so the flames could symbolically take the messages to Marcus in heaven.

Jessica and Austin

We discussed many things that we loved about Marcus and how we would miss him.  We also talked about heaven and how there is no pain there and that Marcus can see and walk again.  We also talked about who was there with Marcus.

 Austin comforting Jessica and Dad coming to help 

 flames symbolically taking our love and messages to Marcus

Jessica and Austin

As we were getting ready to go back inside another butterfly came and fluttered around the light on our back patio. I already had my camera so I flashed some quick pictures. At first we thought it was the same butterfly as before but looking at the photos I can see that it's a different one. It could even be an orange moth but the first one was definitely a butterfly.

Almost two years later, as Jess lay on her death bed she promised to send me butterflies from heaven like Marcus did... and she has!

I love and miss my girl and my nephew, Marcus Russell. He did so much to comfort Jessica and help her move from this life to the next. I'll be eternally grateful to him. ♥

Grieving is Hard Work

Those who have never buried their child cannot know that pain... it is different than having another family member or loved one die.  I carried my girl in my womb for 9 months and had morning sickness that whole time. I gave birth to my Jessica, cared for her through all her special needs, many complicated medical problems, did therapy (OT, PT and speech), gave up so many of my own needs for hers and fought for every little thing for her for 22 years.  My heart yearns to care for her again.  To brush the hair out of her eyes, touch her cheek and calm her fears.  I spent so many sleepless nights calming her down, helping her see the good in her life and helping ease her physical pain.  So many little things I did for her that nobody even knew about because she was embarrassed that she needed my help with those personal things.  We had a bedtime routine that increased over time to where it took me hours to get her calm, tummy full and pain under control so that she could finally sleep.  I used to pop popcorn EVERY NIGHT and we would eat it together while watching TV in her room.  I can't eat popcorn anymore, especially the regular butter kind that she and I would eat.  There are still popcicles in our freezer that we bought for her last year hoping that she would be able to eat them but no, she couldn't even keep that down.

Most days I'm OK but that might be that I'm trying to ignore the closed bedroom door.  A small piece of me is hoping ... or wishing... that all I would have to do is open it and I would be able to rush in and hold my sweet girl.  I miss her so much... I think my heart will break into a million pieces.  I saw her heart give out.  Her heart fought a long hard battle and survived much longer than anyone ever expected, ... but not long enough.  It would never be long enough.  After she took her last breath and her heart's fluttering stopped we sat there looking ... and watching... are we SURE it was done?  Could it start beating again?  She had cheated death so many times before, why couldn't she do it just one more time?  We saw so many miracles during her lifetime why couldn't we have just one more?  The miracle that came was for her, not for me.  The real miracle is that she is no longer suffering and will never feel pain again!  She suffered for so very long.  I grieve over the pain she went through for so long and how I fought so hard to get someone to listen to me and help me ease her pain.  I couldn't get anyone to understand how incredibly ill she really was.  But I knew.  I knew her whole GI system was shutting down.  I knew her heart could only take so much and I knew her spirit was growing tired.  I knew I needed to cherish every kiss, every hug and every "I love you Mommy".

Eleven months ago I told my precious girl to "Go to the light", that it was time to go to heaven.  It was the hardest thing I've ever had to do.  I had fought for her to LIVE with all my might and strength for 22 years and 4 months... but at 3:27 am on October 4th, 2010, I told her to "Go!  You will be great!  You will be beautiful and happy and free!" just when I wanted to cling to her and cry out, "Don't leave me!!!!"  One quick look, one huge tear, one huge frown and one last breath and she was gone.  She was finally free of the body that held her back in so many ways... that kept her from doing all the normal things that most kids do... kept her from having the biggest dream of all... to get married and have a family just like Mommy and Daddy.

I know her dreams will come true someday.  It's just soooo hard to wait.  Last year she told me so many times how much she wanted to get married and have a family - she didn't want to die yet.  I told her about what life will be like when she is resurrected... she will no longer need her oxygen, no tubing to trip over and no oxygen tanks to take with her... she wouldn't need a wheelchair either, she would be able to run and play with her children and not sit in the wheelchair and watch.  She wouldn't turn blue and get short of breath... she would breathe freely and be able to do ANYTHING that she wanted to do.  Her healthy body would be able to have as many babies as she wanted and she would be able to take care of them herself.  She would have a good husband to love and who would be a good father to her children just like her Daddy.  She would get married and have her family - she would just have to wait a little longer.

Someone said to me yesterday, "You'll see her again in heaven".  Callus.  That doesn't help me NOW.  It could be 40+ years until I see her again... I don't think she (the commentator) would want to wait that long to see her little girl.  Another comment from someone else when I replied, "It's just such a long wait".... "if you think about it in her perspective it's not that long at all."  I didn't even respond to that.  Please.  If you want to comfort me don't brush my anguish aside.  If you can't respond in a caring manner then don't respond at all.  I tried not to let those comments affect me and I went about doing other things.  I don't always feel this bad but I HAVE TO FEEL IT.  I can't just brush it aside as if I never even had a daughter.  I did have a daughter - I STILL have a daughter, I just can't see her or touch her right now.

This weekend was my in-law's 50th anniversary celebration.  Each of their 4 children had a display table for their families to set up, anything we wanted to as a representation of our families.  We had pictures and a digital photo frame.  My sis-in-law recommended that I bring the photo display board that I had set up at Jessica's funeral.  I brought it and quickly added a few photos.  We had it set up next to our little table.  I saw quite a few people looking over the photos - I had her birth date and death dates on there so I'm sure everyone knew she had passed on.  I met some people I didn't know and there were quite a few people asking about my precious angel.  It was such a huge hole not having her there.  What made it worse is that Justen and Ravyn weren't able to make it so 1/2 of my children weren't there.  It was very nice to see the in-laws, some of whom I haven't seen in quite awhile.  A couple of the young nieces remind Karl and I of our little girl - who was a "little girl" her whole life.  We had a lot of emotions that night at the party and I sobbed on the ride home.

Yesterday (technically it was yesterday but I still haven't gone to bed so it's "today" for me - lol) was one of those dates.  It was exactly a year ago that we celebrated my birthday 16 days early so that Jessica wouldn't feel the need to linger on and suffer needlessly in order to be here for my birthday.

She was so thin and weak... I couldn't get behind her to hold her up without causing her too much pain.  It was a very difficult birthday for me... but little did I know that she would not only be here for my actual birthday (September 20) but she survived until Oct 4th, 2010.  Exactly eleven months ago.  

I can't believe that it's been 11 months since I last held my girl.  It seems like AGES and I'm so tired... I can't even begin to think of living my life without my girl for YEARS.  It's such hard work to grieve.  Even when you think you are doing ok, it's still there.  The void.  The yearning to care for your own child is still there.  Wishing to hear her voice again, hear her laugh and see her smile... it's even there when I sleep.  I dreamed that Brandon put one of our kittens outside, shut the door and walked away.  I was frantically looking for the kitten who I just knew was out there, afraid and alone.  I realized that my dream wasn't about the kitten, it was about my subconscious worrying that Jessica is alone and afraid.  She always needed me to be nearby.  If I left to go somewhere she would call me every 5 minutes asking when I would return.  Most of the time I worried about her welfare while I was gone... was she breathing ok?  Was she calm and happy or was she worried and scared?  In my heart I know that she is in a place where the cares of the world are laid to rest.  She is with people who love her and she is happy.  She is able to do anything she wants to do and I believe she is able to visit me whenever she needs to.  But my subconsciousness doesn't know this.  It worries because I can't see her, I can't ask her how she is doing and I can't hug her worries away.  I keep thinking that I held her up and carried her for 22 years... now it's her turn to help me from the other side of the veil.  I've worried about how I would grieve over my daughter's death for so many years... and now it's a reality.  I can't just wake up and go to her room and hold her.  She really is gone this time.   

I'm not sure if anyone will read this or not but I think I needed to write it for my own good.  I thought I knew what grieving would be like but it is different than I expected in some ways.  Each day is a new day... not one that I readily get up and am excited about.  It's like I get up and put on a 100 pound sack on my shoulders.  I don't want it but it's there.  The pain, the sorrow, the loss... it's actually even there when I'm asleep.  I've heard that you become stronger to carry that hole in your heart after you've buried a child but it never goes away.

Earlier in the evening I decided to write down a little of what I was feeling and several hours later (taking several breaks from writing) I think I'm done writing for the night.  Sorry if I rambled on and went on different tangents.  I've had a few people tell me that they wish I would go back to blogging since they hate facebook. I think that the main purpose for me to write is to get it out and also, if anyone should happen to read it, maybe they will become more aware of what a mother feels after losing a child.  Maybe they can avoid some of the pitfalls in the unwelcome remarks and maybe, they will just offer a hug or an ,"I'm so sorry" instead of trying to brush off the grieving mother's feelings.

Good Night blogland.

Butterfly Girl

I found this image online and it made me think of my beautiful girl, Miss Jess, in heaven who can finally dance and fly with the butterflies.  

I had a rough day today, you see, one year ago we found out from the GI doctor that our daughter was indeed in starvation mode... her GI system was shutting down due to her terminal GI illness. We didn't know that we only had 2 months left with our angel on earth. I keep having flashbacks of that day and the months following... so many difficult moments... but precious ones as well. Just wish I could kiss her cheek and hear her telling me how much she loves me one more time.

Of course one more kiss and hug would leave me wanting one more and one more.  At least I took the opportunity to get as many hugs and kisses and "I love you's" as I could while she was still here.  We had many private moments and talks which I cherish.  I hope that the good memories will help me going while dealing with the difficult ones as they come.

Last weekend we celebrated my parent's 50th wedding anniversary.  It was a wonderful event.  I hope to have photos back from my dear friend and photographer soon.  I missed my girl so very much but knew that she would have been way to sick to even attend the event had she still been alive.  I'm sure that she and her cousin, Marcus, were there enjoying the rest of my parent's children, grandchildren and great-grandchildren.  My parents both had siblings who were able to make it to their celebration too and it was so wonderful to see them again.  

My husband reminded me that I shouldn't forget to include my cousin, Martin, who died about 14 yrs ago from a brain tumor when I speak of Jessica and Marcus - and he's right.  I didn't know Martin very well since he was much younger than myself but he touched our lives in a way only he could.  When he was fighting his cancer we drove to the Phoenix area (about 2 1/2 hrs from our home) to visit him and my aunt and uncle to offer them support.  It meant a lot to them that we would go and be there with them.. . and it blessed our lives to be able to offer our love and support to them as well.  Caring for a medically fragile child for so many years has offered Karl and I an opportunity to be so much more compassionate towards anyone dealing with an illness, disability or special needs.  I have found that it's one thing that helps lift my spirits - offering support and love to others who are either caring for a loved one with special needs/medical issues or who are grieving the loss of a loved one.  

I hope to be back soon with photos of our amazing family celebration honoring my parent's 50th anniversary.  I'm so thankful for them and their commitment to the gospel and to each other.  

Happy Birthday to my sweet angel Miss Jess

Happy Birthday to my sweet angel, Jessica. 23 years ago my whole world changed as we entered into the world of CHD. I love and appreciate everyone who supported and continues to support us.  Someday I may feel up to posting more on here but for now, Jessica knows how much I still love her and think about her daily. 

Here are some photos from a web page I made back in 2000.  These are the 'early years'.  You can visit the site here.   I am adding a little extra explanation with these photos than what are on the angelfire website and have combined most of her story that is on this webpage.  Enjoy! 

Jessica shortly after birth.  Alert and ready to take on the world!

When Jessica was 2 weeks old she was diagnosed with multiple  heart defects. Some of these are: pulmonary artesia, VSD,  pulmonary stenosis and pulmonary branch stenosis.  click here to learn more about these heart defects  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 weak. 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. 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! 

Jessica was born with polydactaly (2 extra fingers and 1 extra toe).
Jessica was about 8 months old in this photo.  You can see the extra fingers here.

 

Jessica had surgery to remove her extra fingers and toes.  Here she is with her older brother, Justen

Playing peek-a-boo!

Jessica and her brother, Justen...1991
Jessica used mostly sign language at this age due to a stroke she suffered during her first heart surgery when she was 5 months old. The sign language facilitated the speech and language skills. She did learn how to talk... but she didn't learn how to STOP talking.  haha!  She once said about her talking all the time, "It's what I do best!"  She did a lot of things "best".

At age 3 when Jessica's shunt was to be replaced...the shunt was
  accidentally cut and she hemorrhaged out and went 8 min. with out receiving oxygen to her brain and suffered a 2nd, massive stroke and bled for days.
She also caught an infection in her blood and 4 days after surgery we
were called to the hospital early in the morning to spend her last hours
with her. She was bleeding, having seizures and with the infection surly
would die. God blessed us immensely and she stopped bleeding on her own
after losing 1/3 of her blood volume in only 4 hours. She was in a
medically induced coma for a couple of days in order to completely stop
the bleeding. 10 days after surgery she finally came off the ventilator.
To our dismay she was blind and her left side was paralized. We thought
to ourselves, what have we done! 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!" 

Here she is with Santa.  She was also afraid of him at that age but sat on his lap for the picture anyway... she began to realize that he wasn't such a bad guy after all.  hehe 

Pictured below: Jessica recovering post-surgery.  She had to have her arms strapped down or she would pull out her tubes and wires.  We covered her incision and 2 chest tubes so her brother, Justen, wouldn't freak out when he saw her.  He was always so concerned about his sister and hated to see her "owies".  I only have two photos of her in ICU - none with her intubated - because I knew I would never forget what she went through.  A part of me wishes that I would have taken those photos so others would see how strong she was and what she and other CHD children go through.  She looks so sad... she was very depressed until she went home.  She perked up when she was able to be at home and be with her brother.  Jess had to re-learn how to walk and talk..and even had to relearn how to sit up.  We had to start at square one all over again.

 

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 cath 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!  (My 3rd child, Brandon, was only 2 months old when Jess had her 3rd heart surgery... and when Jess had her 5th heart surgery I was 6 months pregnant with my last child, Austin.  After Jessica's 4th heart surgery and we knew she would not survive her CHD we thought she would never have another heart surgery and we decided it would be best for us to not have another child - how could I care for a dying child while being on bed-rest?  - I was on bed-rest with my pregnancy with Brandon - but I've learned to not tell God "I'll never do --- "  Because Jess had her last surgery when I was having my last child.  It was a good thing she did so well because once we got her home and she was doing well I developed toxemia and was put on bed rest.  I still don't know how I did it - but I couldn't have done it without the Lord's help.) 

Pictured below: Jessica at Project ABLE, a special ed preschool program through the public schools for children ages 3 - 5.  She sure blossomed through this program.  By the way, she was terrified of balloons and those were real balloons in the photo below.  She cried a little but I was able to get her to calm down for the photo.  Just one of the million times she was brave.

I made Easter dresses that match!  I don't remember the exact year that this picture was taken but Jess must have been about 6 yrs old at the time.  She loved that dress and hat.  This was before she had to wear oxygen 24/7.  She only had to have it when she had "tet spells"... where she would over-exert herself and get extremely short of breath and "blue".

Jessica on her way to Dietz Elementary school. Her last year in grade school!  Jessica's heart defects prevented her from walking around very much without having a 'tet spell' (explained above) so she needed a motorized wheelchair. By this time she needed the oxygen constantly.  She was such a trooper!  She learned how to drive her wheelchair very quickly and enjoyed the freedom it gave her.

Jessica swinging 1999.  Yes, she would swing with her oxygen on and I would have to make sure that she didn't get it caught onto anything.  That girl never learned to watch out where her oxygen was.  If she wanted to go somewhere - she would just go.  Many times the oxygen would get caught and come off.  She hated going back to unhook it so she oftentimes just kept going and I (or her brothers) would have to get it for her.  I would tease her that most of my appliances stop working when they come unplugged so why is she still going?  She would answer, "Oh Mom!" in a joking tone.  When Karl would tease her she would say, "Daddy!" in the same tone.

 

Jessica gets to sit in the search and rescue helicopter at a local fair and demonstration.  She was a little nervous but she did it!  We didn't get to ride in it but she was so proud of herself that she was able to get inside.  They showed us the medical equipment that they carry in the helicopter - sadly we knew what most of it was due to our experiences at the hospital.  She had already had all of her 5 heart surgeries by that time.

 Jessica and Dad... She sure loves her Daddy!

 September 2000 - I made that dress for her to wear.  She always liked wearing dresses for school photos.  We weren't able to buy them every year but I'm so glad I have this one.  It seems that they had Jess take off her oxygen for the school photos... trust me, she was needing it more and more so it's gotta be nearby.  

  In 2001 professional photographer from LA came to take pictures of Jessica and other children involved at the "Tu Nidito" support group. 

 Jessica and Mom

School photo - Spring 2003

 Sergio Lopez took the following pictures and many others of Jessica and our family on Aug 19, 2004.  Jessica had been admitted into hospice due to daily lung bleeds.  An anonymous family from our CHD online support group through TCHIN paid to have family photos taken.  I'm so glad we have these great photos!   

Fortunately our hospice nurse convinced the pulmonary doctor to start her on morphine therapy to prevent the lung bleeds... and it worked!  A year later Jess was released from hospice due to not having lung bleeds in several months! More photos from 2004 Jess and her parents, Nancy and Karl 

Jessica and brothers (oldest to youngest) Justen, Brandon and Austin

Our family

I'll try to post more to her life story later. Thank you so much for visiting and I hope you will leave a little comment for Jessica's birthday today.

Families Can Be Together Forever

I learned this song as a child and have always loved it. It helps me to remember that I will see my sweet Jessica again and that we can live together forever. I haven't posted since her passing - 5 months ago today.  I just haven't felt emotionally up to posting here but I have posted a lot on facebook. I like that I can post just a few sentences a day on fb and be done.  I'll try to post more here because I like that I can label my posts and easily look them up later.  The past few days I've been looking over my "Jessica" posts to find the fun events in her life.  She had so much pain and suffering that she endured... those are the thoughts that tend to flood my mind... so I am looking for the joyful moments and the smile on her sweet face.  These are the moments that I NEED to remember.  She will NEVER have to endure pain again!  I'm so very proud of her. 

Our family has been going through a lot as my youngest son is having a lot of medical problems. We are seeking treatments with several doctors, therapists and our bishop. He has received several priesthood blessings and I know that he will be healed. Better days are ahead. We just have to keep hoping, praying and working towards that goal.  We also won't always hurt this much at the thought of her being in heaven.  It's hard - oh, so hard - to think of how long it will be until we see her again - but this journey will be worth it! 

Jessica Marie Jensen earned her wings

Jessica Marie Jensen passed away at 3:30 am on Oct 4th with her loving parents at her side. She lived a life full of medical procedures, heart surgeries, strokes, and pain... but she gave love, peace, hope, encouragement and faith. We invite you to celebrate her remarkable life with us.

The viewing and funeral services will be held at the LDS East Stake Center: 6901 E Kenyon, Tucson AZ 85710 on Saturday October 9th

The viewing will be from 8:00am to 9:45am in the Relief Society Room. The funeral will start at 10:00am.

Following the services those who would like to, are welcome to go to East Lawn Palms Mortuary - 5801 E Grand Rd, 85712 We will have a balloon release there as well as a few words and prayer.

If possible, please do not wear black. Jessica has always been so happy - even when in pain. She has always love beautiful colors (her favorites being pink and yellow). Please wear Sunday dress and cheerful colors as that is how she lived her life.

I was asked where to send cards. Please send them to
Jensen Family
3422 S Champlain Ave
Tucson, AZ 85730

We are also in the process of getting an online obituary written which should be ready by Wednesday evening at www.eastlawnpalmsmortuary.com

Thank you for your loving support through the years. Our love to each of you,
Nancy Jensen and family

Facebook Updates on Jessica from September 14 - 17

Wednesday, September 15 (5:00 AM)

Nancy Taylor Jensen doesn't know what to post. Jess is pale, frail and thin. Her heart beat will be extremely irregular going from tachycardia to bradycardia then will even out and be normal for awhile. She is always thirsty but throws up if we give her very much to drink. We're still giving her the anti-nausea suppositories and "anti...-lotion" (it's anti-nausea lotion but she calls it the anti-lotion. lol).

Her skin is getting almost transparent in some places, especially her wrists where we are supposed to apply the anti-nausea lotion. We give her ice chips and only sips of soda every 45 minutes or so otherwise she is throwing it all up. We... have to be careful not to give her too much ice chips too.

We are giving her more lorazapam to help her be more calm - even if it means making her sleep more (per hospice's advice). It's no fun being thirsty and not being able to drink anything. Poor kid was even hungry awhile ago and wanted to eat something. I can't feed her when I know it's going to hurt her so much by making her throw up. I just want this to be over for her. She asks for her DSI but opens it and is too weak to hold it up... then she falls asleep... that was even before we were giving her the lorazapam.

A dear friend of ours came over a couple of days ago and brought Jessica some beads and a coloring book - she knew full well that Jess would probably never use them but she wanted to give Jessica a gift anyway. I've given Jessica a couple of coloring books and colored pencils lately knowing that she won't use them. I've had a habit over the years of buying crafty things on sale (or when I can find them) and putting them away for when Jessica is feeling "down" or going through a procedure or going to the hospital. I have some nice things still put away .... good thing I have nieces that live nearby that have birthdays, right? ;)

We are still hanging in there. I mean, what else do ya do? Still giving and getting a bunch of hugs and kisses every day. When Jessica told us her good-byes on Saturday thinking she wouldn't be here on Sunday, she said something about thinking that she was going to make it to the 20th (my birthday). I told her (on Saturday) that she didn't need to hold on and wait until my birthday - that we had celebrated my birthday early so that she didn't need to hang on and get sicker and sicker. Well, the thought came to me yesterday that she may still be thinking that she could still hang on until the 20th. I don't want her to die on my birthday if she can help it. So last night I told her again that we had celebrated my birthday and that she doesn't need to try to hang on until the 20th. And then I told her that it would be sad for me if she died on my birthday. Then she asked what day Aunt Karen's birthday is. (my sister - the mom of Marcus) It's on the 19th. I told her that neither of us would want her to TRY to die on our birthdays... but if that's the day that the Lord wants her to go to heaven then that's ok. Then I started talking about how I can just imagine the joy on her face when she enters God's light of love and sees everyone who is there waiting for her. I actually saw a smile on her face. Then we went down a list of everyone that she knows either in person or online who is there waiting for her. Of course Marcus was at the top of the list. My cousin Martin, Zoe, Sydney, Julee, Bethany, Jason, Tommy, Paige... and the list continued. (sorry if I forgot someone here). We also talked about her great-grandparents on both sides of her family. And this is just the beginning of who is there waiting to love her.

Jessica keeps ringing the bell we gave her. (curse that bell! lol) She feels hungry and can hear her brothers getting up and getting ready for school - which includes pouring their cereal. She hasn't felt hungry in weeks except occasionally. I'm trying to figure out what to do for her. I'm going to go and sit in her room and feed her ice chips... and hope and pray she doesn't throw that up.

Please keep the prayers coming. We can feel them. We just need help getting over these rough spots. Thank you all so much!

Wednesday, September 15 (night)

Jess had a relatively uneventful day. Still saying that she is hungry and thirsty (mainly thirsty) so we give her a little soda and ice chips. She's so funny - she insisted that she have her lap-table, notebook and pencil. She kept falling asleep while holding her pencil in place on the notebook paper. All she was able to do was make the dots where she put place the pencil and then fall asleep. Oh, no, she's not stubborn, is she? ;-) Poor girl. I sure wish she could do some of the things she enjoys doing. But at least she is resting....... and that sounds so good to me right about now! I'm headed to bed at 2:30am - - - soooo much better than 8:30 yesterday morning!

The hospice nurse came by and Jessica's O2 was around 80%, heart rate was 96 - 105 but her left lung has even more fluid in it than on Tues (the day before). I just checked her pulse-ox and the o2 is 75% and heart rate was 88-97. Still not bad for her at all. But I did hear trigenemy - where every third heartbeat is a PVC but that didn't last. She is going in and out of it all the time. Amazingly enough she hasn't complained about the arrhythmia like she did ... 3 years ago... no, 4 years ago when she was hospitalized for it. At least it's not bugging her.

She gave me hugs and kisses for all of you! :)

Thursday, September 16

Jessica is quite miserable today. She has a low grade temp and is experiencing a bit more pain. She has been sleeping more so she is taking in less fluids. I pray she is relieved of her misery soon. Thank you all for your prayers, messages and love.

Thursday, September 16 (late night)

Jessica's fever went down after I gave her Tylenol and didn't go back up. She's had a mostly restful day waking for soda, ice chips and meds. (The only ones we're giving orally are for anxiety and congestion and are given sublingually). Jess has said several times that she doesn't feel well. Of course I push the morphine bolus button and stick around to see if she will throw up. I think I'm doing the right thing by making her wait 30 minutes between soda breaks. She can have a little water and ice chips in the meantime if she... feels thirsty. She hasn't thrown up in 3 days now so that's a huge victory on our part! Her heart rate and O2 sats were "normal" for her (I have to qualify "normal since it is relative. lol But she's stable tonight.

She might be getting some skin breakdown so I'm going to call the hospice nurse and see about getting egg crate foam to help prevent it.

Oh, and for those of you who were wondering, I fired the infusion nurse. I didn't get her fired from her job, I just made sure that she doesn't come out here again. I hated to do it but the hospice nurse said that it needed to be done so SHE called the infusion company. yay! I didn't have to be the bad guy 'cuz I hate that - but on the other hand, it's my job to make sure that my daughter is as comfortable as possible and she sure doesn't need to go though getting her port change twice every time the nurse does it. It's not just the needle poke either, it's taking the tape off the old site that is very irritating. Poor kiddo. But, as always, she's a champion! The infusion nurse won't be out until Mon or Tues. I requested Tues so hopefully that'll be when they come.

Jessica about knocked me over when the Disney channel was advertising a new show that is going to air in a week and Jess said, "I'll probably be dead by then". *gasp!* I didn't even notice what was on tv since I was changing her at the time (and most likely administering the anti-nausea suppository - and yes, that's how she got the tylenol - she's such a trooper!). I told her that she will be able to watch anything she wants any time she wants in heaven. She then asked me if she would be able to watch scary movies. huh? I never thought she would even want to watch scary movies but I keep telling her that there's no fear in heaven - that there's nothing to be afraid of so I guess she got to thinking that she won't be too scared to watch scary movies. LOL The aide who was here said, (before I could) that she didn't think there would even be scary movies in heaven. I agreed. But I reiterated that there will be a lot of fun things to do in heaven. Later in the evening that same ad came on the Disney channel and Jessica, again, said, "I'll probably be dead by then." What do I say? So I just asked her if that was the commercial that was on earlier when she had said that and she said yes. I asked her if she was interested in watching that new show anyway and she said, "not really." I wonder what the big deal was and her feeling the need to tell me that she won't be around to see it? And she said it so bluntly - but that's Miss Jess. Blunt. When she was little she would say, "Something smells stinks" if I happened to have bad breath and she smelled it. haha! It was last Saturday that she told us all good bye and told both Brandon and Austin "I might die tonight". She seemed disappointed that she was still around Sunday when she woke up.

My sister's birthday is on Sunday and my birthday is on Monday. I've told Jess several times not to wait for my birthday to go to heaven and that I would be sad if she died on my birthday or Aunt Karen's birthday - unless that's when the Lord wants her to go. I'm going to try not to worry about it. In my book I already celebrated my birthday. I'm also trying to think of Jessica's impending death as a birth of sorts into the Spirit world - one more step towards her eternal progression. I don't kid myself - I know I will miss her - desperately at times - but love her enough to want what is best for her and living like this isn't living. She has also been in so much pain for so long... I know in my heart that she will be so much happier in heaven and I tell her that often.

I'm going to try to get some sleep since she has dozed off. She gave me hugs and kisses for all of you so *muah!*

Friday September 17
Nancy Taylor Jensen was up with Jess most of the night. I went to bed good and tired and instead of going to sleep started to cry. Danggit. I did finally go to sleep and slept like a rock. I'm still very tired and emotional. I love my "baby girl" and am going to miss so much.

Jessica is sleeping and waking only occasionally. Her pulse-ox is normal (for her) - O2 is 76 and heart rate is 80ish. The thing that Karl and I have noticed is that we've been able to see her pulse in her neck throbbing no matter what her heart rate is. Now it's barely noticeable as if her heart isn't beating as strong. The hospice nurse said that it's possible that her heart is getting tired of beating so hard for the past week (while it's been in tachycardia). I agreed and said that her heart has had to work hard her whole life due to the defects. So it could be soon. very soon. I know we've said it before and it's almost as if we expect her to pull out of it because she always does... but I know that even if she hangs on for several more days it will be difficult ones unless she is able to just sleep through it.

We've had such wonderful people from church bringing in food every 3rd day and people from Karl's work calling or coming by. Some people understand better than others. We try to be patient with those who do not understand. We've always been in a unique situation with Jess and her CHDs, strokes, having to learn to sit up, walk and talk twice. The fear of sending her off into heart surgery 5 times not knowing whether she would make it out ok or paralyzed and blind or even alive. Having to keep her home during the cold/flu season or she would be sick and fighting for her life whether in the hospital or at home. Having to keep her in a stroller until she was too big for it in order for her to be capable of maneuvering a motorized wheelchair because she couldn't walk and breathe at the same time. (She has no direct connection between her heart and lungs. The pulmonary arteries only go from lung to lung and only branch off to 1/3 of each lung. The lungs get blood through teeny tiny blood vessels called collaterals which all clamp down when her heart rate goes up. So when she walks all the blood vessels, including the pulmonary artery, clamp down and prevent blood flow to the lungs when they are supposed to open up and allow more blood flow to the lungs in order to provide the body with much needed oxygen while exercising.) One thing that Karl has done and loves to do, is when we've taken Jess to a store - say Walmart - and people are staring at Jess as she steps out of her wheelchair to reach for something.. Karl will exclaim very loudly, "WOW! It's a MIRACLE! She can stand!" LOL People will look away embarrassed. Jessica says, "Oh Daddy!" I love it. Kinda serves people right for staring. lol

So we are used to being unique. different. odd. weird. and fun-loving. This is not fun though. I already miss my "baby girl". She hasn't been able to just be her fun-loving-self in a very long time. She has truly tried and I admire her determination to be happy even when in extreme pain... and even while dying. Recently when Karl and I were telling her that she needs to go to the light when it comes and I was wiping away my tears and told her that I just wanted her to be happy, she said, "But I AM happy! I have a family who loves me!" WOW. She's my super-hero indeed. But now it's time for her to be able to truly be happy - to be free from the pain and many other medical problems that have held her back from doing so many fun things. She has been happy - and has made many people happy. But she has no idea how truly happy she will be when she is "born" into heaven and is whole.

Today is one of my emotional days but that's ok. Like Jessica says, "sometimes the tears just have to come out. Love to all.

Update on Jess Sep 13 & 14

Yesterday's post:

Jess is sitting propped up in her bed, dozing off and waking to have ice chips and sips of soda. She visits with us for a few minutes and dozes off again. I am still sneaking in all the kisses I can - and she will lift her arms and hug me. She's so amazing.

Jessica's heart rate has come down and is in the normal range again. Although that seems like a good thing, the hospice nurse said that she thinks that Jessica's heart rate will continue to slow all the way down to 0 - probably within the n...ext day or so. She could slip into a coma and that would actually be the most peaceful way for her to go. But then again, we are talking about Jessica and the thing she does the best is surprise and amaze us! ;-) I mean, it's been 43 days since she's had anything sold it eat. We never thought she could go that long! Jesus fasted for 40 days - who knew that Jess would take that as a challenge? lol Of course Jess cheated and has had soda. hehe... it's a sense of humor that has also helped us through all the years and all the challenges.

We cherish each moment, each hug, each kiss and each word. It's so amazing to have an angel right here in my home and in my heart. We are ready and so is she... but on the other hand she is comfortable and resting right now so we're just going to take it one moment at a time and one day at a time... just like we have been.

Thank you all for your love and support.

Today's post:

She is throwing up again and has a fever of 101. Her heart is in and out of tachycardia. She is still trying it be very pleasant and polite. I think I would be pretty grouchy by now. Doing two suppositories at a time, one for fever, one for nausea.

She's my hero.

Facebook Updates on Jessica from September 9 - 13

9-9-10

Nancy Taylor Jensen is having a really rough day. Jess keeps vomiting and even fell. She called for Daddy and then got out of bed and fell. He heard the crash and went running only to see her trying to pick herself up off the floor and everything on her bedside table had been knocked off. Then came the dry heaves.

Karl woke me up every time she threw up so I could give her a suppository. He is giving her the anti-nausea lotion every 4 hours as well and nothing is working. I called the hospice nurse and she came out and gave Jess a shot of promethazine. The hospice doctor said that it usually stops the nausea long enough for the other meds to be able to take effect and be absorbed better. She brought several doses in case Jess needs more injections over the weekend. The shot also makes her sleepy so she is resting. I'm going to take a nap - I'm so exhausted. Fortunately we have an aide coming this evening. Thank you all for your good thoughts and prayers.

ps: Jessica had been throwing round the clock every 3 - 4 hours even with us administering 2 anti-nausea medications.

(later that night)

Jess has been entertaining us all night. She is dreaming a lot and talking in her sleep, raising her arms up as if she were drawing or cooking. lol She threw up again at about 3:30am. She's also having a lot of muscle spasms and jerking. Could be the meds. She isn't resting very well with all the spasms and wild dreams.

9-10-10

Jess has had a very difficult 1 1/2 days. She has been confused, dreaming crazy things, crying out for help and her speech has been slurred. Sometimes it's been cute to see her reaching out as if beading a string or even hearing her singing but she hasn't been able to just sleep.

When she was awake she was crying because she can't eat anything or do anything that she used to. Sometimes she seems to be meeting people and at one time she thought that her bunny that died, Mary, was right next to her. I understand that those things usually happen right before a person passes, and I don't mind any of that... it's when she cries out and has a bad dream that I breaks my heart. I'm sitting in her room now on my laptop so I can be here in case she cries out or needs me. Just now she was telling someone, "this is my family" and seemed to be showing someone a picture of her family. And then mumbled some things... then she asked which way to go, "This way or that way?"... and then she tried to sit up. She woke up and I asked her if she had seen the light and she said no. She asked me if she was going to go to the hospital and I said no. I asked her if she wanted to go to the hospital and she shook her head no and so I again told her not to worry that she will stay right here until it's time to go to heaven.

I can't leave her because she just calls me back every two minutes. I'm letting Karl sleep and I'll have my turn to sleep later. I hope this phase, even if it is her last, ends soon. I hate seeing her in mental agony and not being able to rest.

Ps: she also kept crying out with arms and legs whaling about, once she started hitting her own stomach and another time her chest when she coughed. She kept hallucinating and it was just awful. We couldn’t leave her for a moment for fear that she would do something to hurt herself or fall out of bed.

9-11-10

Nancy Taylor Jensen can't sleep. I'm in too much pain and have tossed and turned in bed for about 2 hours. Jessica said her final good-byes last night and hung onto me and cried telling me how much she is going to miss me.

She gave me tons of kisses as I told her that I was going to miss her too but that she needs to go to heaven. She also told her brothers that she loved them and said "I might die tonight". The boys are remarkable and said some sweet things to ...her. I called Justen and he came over before going to work and his wife, Ravyn came by with her mother to visit Jess too. Several times Jessica pointed to where her cousin, Marcus, was. I know he is going to help her adjust to her new life once she passes and that he will show her around. My cousin, Martin, also died from a brain tumor when Jess was just a little girl - about 13 yrs ago - so I'm sure she doesn't remember him now but she will on the other side of the veil. Jessica will introduce Marcus and Martin to all the CHD and "Tu Nidito" children that we've known who have passed and they will become great friends.

Jessica's breathing became much more labored and she was combative at times. The Lorazapam wasn't helping so Karl called his dad to come and help give Jessica a blessing. Karl started singing hymns to her and I stood and enjoyed the father/daughter moment. Then I went into the room and we both sang hymns to her while we waited for Karl's parents to arrive. Jessica became more relaxed as we sang. It was nice to have my in-laws here and the blessing was wonderful. Throughout the evening we were able to have Jessica's aide (and my wonderful friend), Renee, here with us. I thanked Jessica for bringing Renee into my life. :) And Renee shared her thoughts and feelings with Jess while she was still coherent.

I have a feeling Jessica has slipped into a coma. She was didn't respond when I went to bed at 3am... but at least she's been resting comfortably (finally) for the past few hours. Karl is sleeping in the recliner next to her bed. I'll try to get a response again a little later when I change her and if she doesn't respond then I'll call hospice.

Sometimes I hesitate to share too much here on fb (and on my blog)... but so many of you have told me how much my posts help you - so that's why I share. Of course it helps me to write things down but if sharing can help but just one person then it's worth it. You know... I wouldn't want anyone to have to go through watching their child suffer as Jessica has throughout her 22 years and then watch them die.... but my faith has been strengthened through all this in a way it couldn't have been any other way. My beautiful, pure, innocent, precious daughter has taught me so much... it's a privileged to have been her mother for 22 yrs in this life and for all eternity to come. Jessica loves life more than anyone I know... and that says a lot considering she's suffered 2 strokes, has been blind, paralyzed, had 5 heart surgeries, hemorrhaged, is developmentally delayed, has had countless other procedures, hospitalizations and other surgeries, ETC. She IS a miracle. Even after her death she will still be a miracle. She is JOY. And I can only imagine what a joyful event it will be once she passes into the spirit world and can do all the things that she's missed out on in this life. She will DANCE, RUN, SWIM, SWING and anything else her heart desires. And it's going to be quite the celebration. There are so many people who have passed on who love her and are waiting with open arms to receive her. I wish I could get a glimpse of that event - but then I would really want to go with her and I'm needed here. My husband and sons & daughter-in-law need me and I need them.

I've rambled on long enough. Thank you all for your love and support. ♥

9-12-10

Nancy Taylor Jensen is touched by all the love and support offered here. Amazingly enough, Miss Jess was able to wake up and talk today. She is mostly sleeping but definitely not in a coma as I had thought she was earlier. Her breathing is more labored and she is getting congestion in her throat.

She is able to wake up for a few minutes at a time and then sleeps without all the hallucinations. I am convinced that she had a reaction to the injection of promethazine that was given to her two days ago for nausea. I noticed that her m...uscle jerks and spasms increased greatly after the injection and the hospice nurse looked it up and that was a side effect listed... about the hallucinations... my thoughts were that it was part of the dying process or that her brain was being affected due to her electrolytes being off but now I'm not sure since she has come out of that phase. The hospice nurse thought it was the morphine since we can't tell for sure exactly how much her body is processing or at what rates because it's in the subcutaneous tissue and with her muscle mass deteriorating so quickly... we just can't tell. Whatever the reason, I'm so glad that it's over and am praying that it doesn't happen again. What an emotionally and physically draining time for us.

I'm beyond exhausted and am going down for another nap but wanted to thank you all for your love. Karl is taking time off work to be here for Jess, me and the boys. I'm so thankful that he is my husband.

Funny story: when Karl and I were dating I received inspiration from that Lord that Karl was the one I was to marry. (I had almost married someone else 2 years prior so I had it in my mind that I was going to be REALLY SURE before talking about marriage with anyone else). Shortly after the inspiration that I received, Karl and I were talking and I don't even remember what words I said but out of my mouth came - the Lord has told me that you are the one I'm to marry so what are you going to do about it? type of message. One brief instant of me thinking that I was the biggest idiot on all the planet and Karl says, "You're right". We spent hours upon hours talking, getting to know each other - our goals in life, spiritual goals and family goals and they were exactly the same. After a whirlwind (and challenging) courtship we were married on April 19, 1985 in the LDS Mesa temple for time and all eternity. I've been married to the most amazing (and sometimes frustrating) man on earth for 25 years. hehe! I love him to pieces and he loves me with all his heart too. I tell him all the time how glad I am that I listened to the Lord and MADE him marry me. hehe He says that he is glad that he listened to the Lord too because during that small pause he felt the Spirit telling him that I was the one for him too. Good things happen when you listen to the Lord.

Just like Jessica said, "This is the life! I have a family who loves me and I love them too!" ... and I extend that to include all of you who are praying for us. This is what life is about!

FB Updates on Jessica Aug 24 - 28

FB Updated from Saturday, August 28,2010:
My poor Baby Girl - rashes on her arm (and bum but not going to photograph those!) and her morphing port didn't get placed right yesterday (by the RN) and it pooled just under the skin which we found today. Jess had a rough night - wonder why? Could it be that she wasn't getting her morphing into her blood? I changed the port myself and it's doing much better and somehow she is magically doing better too. *doh*

Jessica showing me her rash on her arm and where the sub-Q port leaked into the tissue and didn't get into her blood stream.


Jess giving me a surprised face. She is such a crack-up!


Another cute face. You would never know she was so sick!


She is still being a goof-ball for the photos.


Here's her rash. Poor kid... her arm keeps peeling and it's working it's way down the arm (towards the hand). It seems as though she has some fluid build-up just below the elbow from CHF. Her upper arm is as skinny as her forearm. :(


Can you guess where the morphine pooled in her arm? See that big white area under her arm? That's where the RN put the sub-Q port and it leaked into the tissue and didn't get into her blood stream. No wonder she had a rough night.


Here's another view with her pretty face partially in the photo.


Here is the back of her arm. I was able to get the subcutaneous port just below the one she had for a week (before the RN Changed it yesterday).


Here is her morphine and pump. It fits into this nifty bag which we hang on the side of her bed. It's also a "fanny" pack. All my British friends are probably giggling right now at my use of the word fanny. lol

Miss Jess was dizzy quite a bit after rolling from one side to another so we had the on-call hospice nurse come to check her out. Her vitals are surprisingly good (for her). Jess has some sounds in her right lung. It's a grinding noise. I got to hear it. Not really fluid building up but also not pneumonia. The RN called is "rhonchy" but it's definitely in her lung, not the bronchials... but not the cause of her dizziness. She is most likely getting dehydrated. Her skin is very dry especially her hands and feet. So I "pamper" her by rubbing lotion on them. Her arm is also flaky and dry where her rash is so I'm putting lotion on that too.

TMI warning: (LOL) Jess has been too weak to get out of bed even just to use her portable potty so I'm doing the diaper thing again. She isn't shy about it either, which I think is hilarious. A gal that Karl works with came to meet Jess and apparently Jessica was telling her that she prefers diapers over pull-ups. hehe Anyway, I was telling Karl last night that I'm enjoying doing whatever I can for Jess, even if it is changing her diaper, because it's something that I CAN do for her. I know that someday soon I won't be able to do anything for her and so I'm cherishing everything. And Jess thanks me too. She says that she appreciates both her daddy and mommy and has the best family ever.

In fact, just a few days ago she said, "Ahhhh... this is the life!" I asked her what she meant and she said, "I have the best life because I have a family who loves me and I love them."

FB Update Thursday August 26, 2010:
Jessica has been quite talkative today and was even teasing her daddy. I put lotion on her face and gave her a manicure and a pedicure. She told me that I was pampering her and she really enjoyed it. It makes me feel good to be able to make her feel good. I'm going to treasure these moments forever.

She was saying that her cousin, Marcus Russell (who passed away) is probably watching over her and wishing that his Aunt Nancy would do that for him too. (the pampering). I told her that he is probably thinking that he will get her to do it when she gets to heaven. She said that she would do it for him if he would do it for her. Then she started giggling and saying that she was going to paint this toenails and fingernails too and how all the angels will laugh.

It was so cute how she came up with the word "pamper" out of the blue. Her feet were so dry but her face isn't as dry as it used to be. All those meds were making her face very dry and I used to put lotion on it every day and that didn't seem to make a difference. Now that she isn't taking her meds it's not as bad... but she still enjoyed the attention... except for around her mouth area. What a drama queen - gagging and such when I accidentally got a tiny bit of lotion on her lip. LOL What a nut. But she knows she's loved. A lot.

She was asking me if uncle JR "cried a river when his oldest son died" meaning Marcus of course. I told her that I didn't know but I am sure he was relieved that his son was no longer in pain. I asked her if she is worried about her parents when she goes to heaven and she said yes. I told her that when Heavenly Father calls her home that she needs to go. I said that "Daddy and I will be ok because we know that you'll always be with us." Then we got interrupted but I think I need to keep reminding her so she doesn't needlessly hang on and on and on...

FB Update Tuesday August 24, 2010:
Jessica has been experiencing more pain so we finally got a higher dose authorized this evening. The pharmacist called me and walked me through the electronic pump and I reset it for more morphine to be given continuously and she can also have an extra push (bolus) every 10 minutes instead of 20min. She is resting more comfortably now.

Karl is suffering from exhaustion. I'm worried that he is going to get sick so I sent him to bed as soon as I got up from my nap (and after we had family prayer). I hope he gets some sleep tonight. I'm tired but not nearly as tired as he... is. My fibro is really acting up though since it's been storming all afternoon/evening. :( But at least my Baby Girl is more comfortable so we'll all sleep better tonight.

Please continue to pray for my sons, especially my youngest. All this has really been hard on him. Justen & Ravyn (my oldest son & wife) seem to be doing ok, so that is good. Please pray that Justen can get a better job and that Ravyn will continue to get clients with her new job.

I asked the pharmacist where my RN degree is and he laughed and said that I'm almost there. When I told him that Jess has been through 5 heart surgeries, strokes & countless procedures. I then told him that I've had to draw pictures of what has been done surgically and what her CHD's are and he said that I most likely already deserved one. We both laughed. He was very nice. I'm very happy with our hospice team and the infusion company who takes care of the morphine pump. It's great to have this support in place.