Are We Having Fun Yet?

A Mom's Response to her child's question, Are you Santa?

2011-12-07T16:18:00.000-07:00

Jessica believed in Santa all her life. You could see the excitement and joy in her eyes when she spoke of Christmas and Santa. Below is a Christmas picture that I came across of Jessica (when she was a little girl) with Santa.

She always looked forward to her visits with Santa - that is once she realized he was a nice guy. hehe! She always told me that what she liked most about Christmas... even more than Santa... was spending time with family. We love getting together with family & friends and spreading the Christmas spirit. We miss Jessica every time we get together with family but we feel her presence somehow. She is with us and always will be. We are striving to become an eternal family.

In the Spirit of Christmas, I found this posted on a friend's blog. I love the answer and will be sharing it with my family this Christmas Season. Enjoy:

Over on Pinterest I came across this letter a Mom wrote to her child after a persistent question did not go away. You know the one, we've all asked it or heard it!

Are YOU Santa? Is Santa for real?

Here is the letter. I've adapted it somewhat for our family.

Dear _______,

Thank you for your letter. You asked a very good question: "Are you Santa?"

I know you've wanted the answer to this question for a while, and I've had to give it careful thought to know just what to say.

The answer is no. I am not Santa. There is no one Santa. I am the person who fills your stockings with presents, though. I also choose and wrap the presents under the tree, the same way my Mom did for me, and the same way her Mom did for her. (Optional- and yes, Daddy helps, too. Of course add whoever helps do this.)

I imagine you will someday do this for your children, and I know you will love seeing them running to the tree on Christmas morning. You will love seeing them sit under the tree, their small faces lit with Christmas lights.

This won't make you Santa, though. Santa is bigger than any person, and his work has gone on longer than any of us have lived. What he does is simple, but it is powerful. He helps teach children how to believe in something they can't see or touch.

It's a big job, and it's an important one. But the power to believe is based in the love that only comes from Jesus. And throughout your life, you will need HIS love to believe in yourself, in your friends, in your talents and in your family. Your strength from Jesus helps to believe in things you can't measure or even hold in your hand. HIS grace will light your life from the inside out, even during its darkest, coldest moments.

So, Santa is just another teacher, and I have been his student. Now you know the secret of how he gets down all those chimneys on Christmas Eve: he has help from all the people whose hearts he's helped fill with joy and those who want to bring happiness to their loved ones.

With full hearts, people like me (optional- add, and who else helps too) take our turns helping Santa do a job that would otherwise be impossible.

So, no. I am not Santa. Santa is part of love and magic and hope and happiness that our life can bring from the greatest gift of all, Jesus Christ. And we are all invited to be on HIS team! Merry Christmas!

I Love you and I always will.

Signed, _____________

I hope you enjoyed this as much as I did. I hope you and your loved ones have a safe and wonderful Christmas season!

Beauty From My Pain

2011-11-04T15:56:00.000-07:00

A dear friend of mine posted the following video to my facebook wall. I love this song so much I decided to share it here.

This song describes how the pain from losing a loved one will eventually turn to beauty. The pain we feel after a loved one dies is so very deep because of how much we loved that person. The beauty is that we are so blessed to have known that person. We can hold the person in our hearts and cherish the memories until we see our loved one again.

I hope you enjoy it.

Marcus's Butterfly

2011-10-30T22:41:00.001-07:00

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

2011-09-05T04:34:00.000-07:00

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

2011-07-30T01:15:00.000-07:00

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

2011-06-03T12:13:00.103-07:00

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

2011-03-04T00:10:00.001-07:00

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

2010-10-06T23:57:00.002-07:00

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

2010-09-18T00:36:00.000-07:00

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

2010-09-14T09:32:00.002-07:00

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

2010-09-13T04:18:00.003-07:00

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

2010-08-29T12:50:00.004-07:00

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.

Facebook Updates on Jessica

2010-08-25T03:59:00.003-07:00

I haven't had the time or energy to update my blog every day but I have been updating my facebook page almost every day. I decided to post the most recent posts so you all can get caught up on what is going on with Jessica. We truly are on an emotional roller coaster ride with her. We have surpassed what anyone expected time-wise but it is so hard to see her wasting away. I'm so glad that she isn't feeling hunger or she would truly be miserable. I'm so blessed with the time I've had with Jessica and thank my Heavenly Father daily. She has been such a blessing to me and my family. Below are the updates - I put the date above the facebook post so you'll know when it was posted. I truly appreciate all the comments of love and friendship. I've gotten a ton of spam comments so I have to moderate them but I get to them frequently.

From Sunday: 8-22-10 (morning):

Today is the dreaded day as it marks the 21st day since Jessica stopped eating. She can't eat. She feels left out when we eat food that she likes. She has spit out jello and soup as her stomach "says no". We've always been told that a person can only survive 3 days without water and 21 without food. She is surviving on soda.

She scared us when she had a visitor drop off some flowers and she didn't respond to me at all. After walking the visitor to the door I went back into her room and she barely shook her head "no" after I tried waking her up and asked her if she could wake up. I was rubbing her leg and shaking her a little while talking to her. She woke up at midnight and was more talkative but she didn't even remember that Renee (her aide) had been there for her shift. At least she slept through the thunderstorm.

She is getting rashes from not being up and about and sweating. We never know when she will be awake and talkative or when she will be sleeping for hours at a time. She could slip into a coma at any time - that's why we got so scared when she didn't respond.

My brother and his oldest son are coming into town this afternoon - so please pray for them to travel safely and that Jess is able to visit with them. She was wide awake when my brother called me and she even spoke to him on the phone and teased him. It did my heart a lot of good to see her so happy. I hope this visit goes well. Thanks everyone, this is such a hard road and I truly appreciate all of you for helping us through it.

From Sunday: 8-22-10 (late night):

Jessica had a good time visiting with her Uncle Brian and cousin Kevin who came in from out of town to see her. She also had quite a few other guests so it was a busy day. It was so good to hear her laughing. Please keep the rest of our family in your prayers as the boys go back to school and hubby goes back to work.... He's been off for 3 weeks and is using up all his vacation time. Thanks so much!

From Monday 8-23-10:

Jess had a rough evening yesterday. She decided to try a bite of mashed potatoes but immediately threw up afterward. She became very restless and was saying that her heart was hurting. We put the pulse-ox on and found that her O2 sats were high but her heart rate was only 39 - 40. She couldn't relax so I called the hospice nurse.

The hospice nurse had me give Jess some lorazapam sub-lingually and that calmed her down and made her feel much better. The hospice nurse (and doc) were afraid that she could be in what they call "terminal restlessness" and as her heart ra...te goes down she will become even more restless and to give the lorazapam. They thought that she very well could "go" that night. I called Karl at work and he came right home. He had gone to work since Jessica has been quite stable and energetic for several days. Karl's srg. came over to visit too. He has become very concerned since Jess got so sick 3 weeks ago. Karl was sitting with her and she rolled over and all of a sudden her heart rate went way up to 70! (Her heart rate has normally been between 70 - 80 but has been at 50 - 60 the past 3 weeks... so 40 was extremely low.) Her heart rate finally settled in at 55 - 65 and has been in that range all night and all day today. I took the pulse-ox off at about 1:30 this afternoon. She has been resting quite well since she had the lorazapam last night.

So Jessica is doing what she does best. Scaring the heck out of us and then coming back. LOL! The whole hospice team is amazed at her. We are very thankful for our hospice team, the home health aides (especially Renee - my best hug-giver!) and everyone who has been coming by to visit and bring food. I am so thankful that the Lord allowed us one more day with His daughter who he's loaned to us the past 22 years. And am thankful for such amazing sons who were still able to get up and go to school today and who are so Great to have around! My husband is the best husband I could ever ask for and I'm so thankful to him for all he does. He is off work again to be here to help watch over Jessica in case she has another restless event - which they tell us will probably happen. We are taking turns sleeping - he tried sleeping in his cot in the living room (which he has been doing for the past 3 weeks) but he kept getting woken up by different things - so when I got up I sent him to bed. I'll be taking a nap soon too. There is a thunderstorm brewing so I'm going to unplug my laptop in case of a power surge.

From Tues 8-24-10:

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. Thank you all so much for your loving comments.

Poem for Jessica

2010-08-09T17:58:00.004-07:00

This is a poem that my sis-in-law wrote a few years ago. I hadn't read it in quite sometime and don't really know where my printed copy is... so I asked her to please post it. Enjoy this beautiful poem.

Mandy writes:

Poem for Jessica by Mandy Holmes Taylor
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."

Sad News

2010-08-08T03:32:00.002-07:00

Things can happen so fast sometimes that it takes awhile for my brain to catch up. That's what it's been like for the past several months. We've had one thing after another - or several things at once and suddenly I'm wondering... how did we get here?

First of all, Jessica was able to have a nice birthday. Lots of people came and she enjoyed their company. She didn't eat much but she did get to eat a little of her cake the next day. Unfortunately the very next week she got very sick, vomiting, fever and her ankles swelled up quite a bit. My husband was out of town for work and I had to call him home so we could hospitalize Jessica due to congestive heart failure. We got her settled in, gave her massive amounts of diuretics which had Jess and I spending 1/2 the time in the bathroom. lol The good thing is that we got to be in the new Children's hospital here in town. It's very nice. The echocardiogram showed that the right side of her heart was even more enlarged than we expected and that both the right atrium and the right ventricle were very enlarged with regurgitation between the two chambers - which causes more pressure - which causes more enlargement - which causes the valve to not be able to close properly -which causes regurgitation... you see the cycle. So they increased the amount of diuretics for her to be on while at home asked her to keep her feet up. A palliative care doctor came to visit us and after talking to Karl and I for awhile she said that her main concern was that Jessica was not getting ENOUGH morphine. That's the first time we had ever heard that - everyone has been so concerned about her getting too much. Although they had reason to because she has Ischemia of the bowels which slows down the motility of the bowels and pain killers such as morphine will also slow the bowels and she definitely doesn't need to have an obstruction due to stool backing up. The GI doctor examined her and took an x-ray and told us that she was clear of stool and that as long as we increase the morphine to increase the Amitiza which is a medication to help move the stool through the system. We were also encouraged to enroll Jessica into a hospice and one was suggested to us that was also a palliative care company.

So the ball got rolling and before we knew it a hospice doctor and team were talking to us and told us that she definitely qualified and he was very concerned about Jessica's pain level. We signed her on just a couple of days later.

The morphine has been hurting her stomach but her gut is extremely painful without it (due to the ischemia). It took us awhile to figure all that out. The hospice nurse mentioned that "Jessica wasn't eating enough to sustain life." I got to thinking about it and realized that she really had decreased the amount of food she was eating over the past few months. We took Jessica to the GI doctor last Thursday, July 29, and he told us that Jessica was literally starving to death and that if we didn't get her to eat protein then her GI system would not work at all. We were shocked by the information. When they weighed her she had lost 15 lbs in just over a month. She's not a very big girl so that was surprising. The CHF (congestive heart failure) was making her retain fluid all over her body which masked the fact that she was losing weight. The doctor wiped away some tears from his eyes and said how sad it was for her to have to go through that... she's such a sweet girl. Of course he told us this in private and as he left I just hugged my husband and cried a bit. I knew then that she was definitely going this time.

We got McDonald's on the way home in hopes that it would encourage her to eat - and she did - 3 whole chicken nuggets! 4 fries? She could only eat 1 1/2 nuggets that night. I went online and calculated that on a GOOD day she was only taking in about 600 - 700 calories TOTAL. So we started pushing the food, hiding protein power in her fruit smoothies - and it backfired on us. That Monday night she got very sick: vomiting, high fever (104.5), etc.... she even got mad and yelled at me, "why is everyone trying to make me eat? I can't eat". On Tuesday we were able to get a subcutaneous port for the morphine and it's on a pump. It completely bypasses the stomach in order to make her more comfortable and have continuous pain relief. They also came back a couple of days later and programed it to be able to add a little extra morphine for break-through pain by the touch of a button. It's also programed to not allow more than one "bolus" every 20 minutes. If she is needing a lot of extra bursts then they will reprogram it to give more continuous morphine. It's been such a blessing!

I told my husband that it was going to happen very fast now.... and here we are:

The last time she ate anything solid was last Sunday, Aug 1st. She has had several days of being comfortable 99% of the time. I just can't remember when she was so peaceful... she's been in so much pain for so many years. She had several days where she was able to sit up and visit with family and friends who have come to see her. It's been so nice to see her enjoy their visit and be happy - and be comfortable. What tender mercies from the Lord.

She has been sleeping more and becoming more withdrawn the last couple of days. My parents were able to arrive into town safely and have been here to visit with Jess twice. My sister, (who's son passed away almost 2 years ago from a brain tumor) flew into town and came to see us also. Jessica has a couple of visitors come by and she didn't really open her eyes much for them but did a little wave with her fingers when they left. When I was talking on the phone, I mentioned that my sister was coming into town she smiled. As soon as my sister came her eyes flew open and she adjusted herself in her bed so she could see her aunt. We haven't seen my sister in almost 3 years. It's soooooo good to have her in town for a few days.

Jessica has pretty much been nodding or shaking her head and even signing a few words instead of speaking but a few hours ago (about midnight) she perked up and started talking to me. Of course she would... it's party time at midnight. hehe! Poor kid threw up earlier in the evening (and that woke her up!)...mostly dry heaves. I called the hospice nurse and they want me to put the anti-nausea lotion on her wrist every 4 hours 24/7 if possible. That way we can keep on top of the nausea. I've also noticed that instead of fluid building up in her feet and ankles, she's got some building up in her knees. She is also quite congested at times. Most likely due to lack of activity but she is too weak to do anything except to go potty (which is a portable one that we bring into her room and it's 1-2 steps for her to take at most.

We are having to shift our thinking. All these years I've done my best to keepher alive and as healthy as possible. Now the goal is for her die as peacefully and comfortably as possible. She has been going through the dying stages for several months already - we just didn't know it due to her CHF keeping the weight on. But there's nothing that we could have done anyway. The hospice nurse explained to me that the GI doctor was wrong when he said that Jessica was starving and that we needed to get her to eat. He said that most doctors have been trained to save lives and concentrate on that so much that sometimes they forget that dying is also a natural part of life... if the body is dying it doesn't need food and it will reject it. A little while ago, after she started talking, she asked me what I thought she could eat. I said that I wasn't sure that she should eat because I didn't want her to throw up again. She said, "I didnt eat today or yesterday so I'm worried" I told her that her body doesn't need to eat right now and that I
could get her more soda, popcicle, jello.... she asked for Root Beer. She seemed relieved that I wasn't pushing her to eat and that it was ok not to. She isn't aware of time as much anymore and I was surprised that she thought it had only been two days since she had eaten anything. It's ok. We are just playing it by ear and loving her as much as possible.

Thank you all so much for your lovely emails. I have received quite a few privately and I appreciate each and every one. I pray that God continues to bless her with peace and comfort and that she is able to go on to her new life with joy in her heart knowing that so many people love her. She has her cousin who will greet her (and whom she dreams about every night - they usually go to Disneyland in her dreams)... so I know she won't be alone. There are many others who will be there for her too.

Love and prayers,
Nancy

Oh, I almost forgot. Several people have asked where to send cards so here is the address:

Jessica (or Nancy) Jensen
3422 S Champlain Ave
Tucson, AZ
85730

Thank you again for all your love and support!

New blog design, Jessica's birthday & Updates

2010-05-22T04:48:00.006-07:00

I was getting tired of the same-ol thing and wanted something to cheer me up so I changed the background on both this blog and my craft blog. I find it to be quite cheery.

So here's a quick update on us:

Karl is still working hard, Justen and Ravyn are still blissfully married and have stars in their eyes, Brandon is finishing up his junior year and did a tremendous job as "Felix Unger" in "The Odd Couple". He sure has a talent! I hope to add photos of this play soon. I even got a few short clips! Austin is about to graduate or "promote" as they are calling it now from middle school to High School. I can't believe my youngest child will be in HIGH SCHOOL!!! When, oh when did they grow up? I still remember when I had one in preschool, one in elementary, one in middle school and one in high school! Boy, that was quite a year having them all in different schools and going and coming at all different times. Now I only have two left in school. Anyway, we are looking forward to a productive summer. Austin and Brandon plan on working on scouting projects and other fun things.

Jessica will be 22 years old on June 3rd! I can't hardly believe it. We are planning a party on June 4th (Friday) so if you are in the area and want to come, email me at fancydancycrafts @ cox . net (no spaces). Or if you'd like to send her a card, email me. *smile*

Unfortunately Jessica is still having a lot of pain. The new medication seems to be helping some and I think that her belly is definitely softer, but she is still in pain. She has been eating less the past few days and she looks bluer. She told me that she felt palpitations (she opens and closes her hand really big to explain what it feels like) so I put her on the pulse-ox and her heart rate looked good but her oxygen sats only went up to 67% at rest. (Her goal is 77% - 78% and normal is: 96% - 100%) That is also on 3 lts of oxygen... she always has it on and we always measure her sats with it on. The oxygen can help bring her sats up by 5% - 10% so it's worth it to keep it on... but it can only do so much.

I've had a few dreams lately, one was yesterday while Jessica and I were sleeping, and I dreamed that Jessica had died. I hurt with my whole being. I wanted to desperately to hold her, kiss her and see her smiling face. As I was waking up my body was hurting from my fibromyalgia so I didn't want to wake up but my heart was hurting so badly that I didn't want to stay asleep. I know that I'll feel that anguish one day and I won't be able to go into her room, wake her up and hold her. I hate having to go through this grieving before she is even gone. And I hate seeing such a beautiful young lady (aka: baby girl) suffering so much pain every day. Sometimes I just want to scream: "My baby is dying!!! She's in pain and I want that pain to end! But I don't want her to go!" I was crying a little as I was waking up thinking, "I'm not ready for her to die.... I'm just not ready!" But when will I be ready? I lie and tell her that I will be fine and for her to go ahead and go to heaven when it's her time. I put on a brave face and hold her as she tells me that she wishes that she was already in heaven with Marcus (her cousin who died 1 1/2 years ago) and Donna (our next-door neighbor who died last Nov) because that way she won't be in pain any more. She tells me that she wants me to make a game room out of her room so that her brothers can go in there and play games, watch tv and remember her. What's odd is that she has always been so protective of her room that she would never let her brothers even step foot in it without yelling at them! But the last year or so if she has been watching something on her tv and one of her brothers has stepped in to ask her something and gotten interested in her tv, she has invited them to sit down and watch it with her. I think that's pretty cool. She knows and yet she doesn't. She seems to get reality and fantasy mixed up more and more. She asks complicated questions and doesn't understand the answers and she repeats things multiple times not realizing that she's told me 3 times already. Oxygen deprivation is a terrible thing.

Oh, did I forget to update what is going on with me? Well, let's see. I've made a few cards (my creative therapy) and have managed to clutter up my whole craft room! LOL I've reconnected with some ooold friends on facebook. One good friend from college and one from high school. It's like we've picked up just where we left off. Actually, my friend from college called me. It was great to hear her voice again! It's been about 10 years since I last saw her and 12 years since I saw her kids. My friend from high school... let's see, it's been ... since I first started college since I last saw him. I don't think I'm going to put how many years that's been. HAHA! But it was great to tell him about my family and to find out about his. Boy, life is sure different than what we had in mind way back then.... but ya know what? It's still good. I grieve and care for a dying "child" but she brings me so many blessings that I can't even count them all. My husband is the absolute BESTEST and my sons are quite amazing. I see them growing and changing. I've had quite a few great talks with them one-on-one or even together. I love it that they feel then can trust me. Brandon wrote something so sweet on my fb page. I sure love that kid! I posted that I was going through a mid-life/identity crisis. He told me how much he appreciated me being his mom and that he can't even imagine not having me as his mom. He actually posted that on my fb wall for all the world to see. Not too many 16 yr old boys will do that. :-) My other sons tell me they appreciate me and that they love me too. I also have a daughter-in-law who tells me that she loves me and what a neat thing that is! I'm also trying to organize my house. I just need a back-ho and a huge garbage bin out front. LOL I want to make my house a haven. I also need it to be presentable for guests in 2 weeks! *gasp!* Thankfully Karl will have a few days off right before the party so he can help do the yard work and get our gazebo lights and fountain working again. (and take care of weeds, etc, etc) I just wish my body didn't hurt so much, could sleep when I'm actually in bed and that my allergies hadn't kicked in and caused my sinus problems. It would help me with all those goals. ;-)

Please continue to keep Jessica in your prayers. We want her to have a great birthday! She has told me several times, "What if I have a bad tummy ache on my birthday?" and "I want to be able to eat some of my birthday cake at my party... what if my tummy hurts too bad?" Of course we always think that this could be her last birthday, but if things continue going down-hill like they are.... I'd really hate to see how bad she would be a year from now. So all good thoughts and prayers are welcomed. Thank you for visiting!

GI doctor visit

2010-04-30T04:06:00.003-07:00

We took Jess to the GI doctor yesterday. She definitely has poop backed up inside and that's what is causing some of the discomfort. If left alone it could cause an obstruction which will lead to death since surgery is not a viable option for her. When the doctor listened to her he said that she had NO motility at that time. We started her on a new pill which may be hard on her. It works somewhat like lasix does except that instead of working in the kidneys, it works in the GI track. We are hoping that it softens the stool that's in there and gets it out. I just hope this works. The doctor said it's her last ditch effort. (If you'll remember, Jessica has developed Ischemia of the bowels. The artery that takes the blood to the gut has narrowed and the intestines are basically dying do to lack of oxygen. Surgery is NOT an option. Risks are high and benefits would be low if any.)

She also has fluid in her belly so we are hoping that the lasix that the Peds Cardiologist prescribed a couple of weeks ago will help take care of that. The PC says that she is in the last stages of her heart disease and believes that her CHF is worse. He increased her lasix and digoxin in hopes it will help make her more comfortable. (I posted some of this info in my last post.)

The new medication could be hard on her because it could cause diarrhea. (Lasix make ya pee very frequently too.) We are always worried about her fluid status because her blood is too thick due to low oxygen but she carries too much fluid due to CHF. So with this new pill, on top of the lasix, we'll need to watch for dehydration. Another thing that's hard is that she can't run.. and when you have a medication that makes you RUN to the bathroom.... well, you can imagine how hard that is on her. Poor kid! She is sooooo miserable and hasn't eaten much in the last couple of days. I'm just praying this helps or we're in big trouble.

Please keep her (and the rest of us) in your prayers.

ps
I really like the GI doctor. He always tells me what a wonderful mom I am. I don't do it for the praise, but it's nice when someone sees your sacrifices and devotion to your children and commends you on it. :-)

One Step Forward - Two Steps Back

2010-04-26T03:17:00.002-07:00

Well, we made an attempt to help Jessica's pain so we went to one pain specialist who recommended the fentanyl pain patch. This doctor was very nice and took his time to explain things and answer questions. The only thing wrong was that he wasn't taking on-going patients anymore. This was a consultation only. In other words, he would give his recommendations to Jessica's primary care practitioner (PCP) who then could decide whether to follow them or not. Fortunately, Jessica's PCP was willing to prescribe the pain patch. We tried it and thought it might be helping a little so we had the PCP increase it. Jessica had horrible complications to it. Not only was she is just as much pain as before but she was extremely tired all the time which made her feel "horrible" constantly. We knew that fatigue could be a side effect but it should wear off within a week or so. Two weeks after the increase of the dosage, Jessica started having horrible nightmares about a monster who would tell her things like: "Just give up! You are NEVER going to feel better!", "You are ugly and a bad girl", and other awful things that horrified poor Miss Jess. She was afraid to go to sleep after that. She came up with the idea to draw the monster as a silly looking monster so if he came back in her dreams she could tell him that he is just silly looking and to go away. She was so proud of herself for coming up with that idea.

I called and spoke to the PCP and we put her back on the lower dose of patch for a week and then took her off of it. I was at my witt's end not knowing what to do for Jess. She would be in so much pain that she would hold her tummy and cry many times a day. She would try to take her mind off it by playing her favorite games but she couldn't concentrate due to the pain.

So I decided to call hospice and see if we could enroll her again. If you recall (or are new to my blog and/or Jessica's story) Jessica had lung bleeds about 6 years ago. After several tests it was found that her collaterals that go from the aorta to her lungs were bulging, bursting and bleeding into her lungs. A CATH was done and two collaterals were closed off. The problem is that the collaterals are her main source of blood to the lungs and if they close off too many then she would die. The peds pulmonary doctor suggested we place her in hospice since there were "thousands of collaterals bulging, just waiting to burst". Jessica was coughing up blood daily and had to carry a bowl around with her everywhere she went so she could use it to catch the blood. It rocked our world in such a bad way to know that the time we had been fearful of was actually here. It was horrible to sit with Jessica as she coughed and gagged on the blood and cried saying that she wasn't ready to die. She would WAIL. My sons would hide and cry too. It was the most horrible thing we had ever experienced and considering Jess had been through strokes, paralysis, seizures and lung hemorrhages (in the hospital during and post surgery). Anyway... the hospice nurse suggested to the pulmonary doc to try morphine therapy for the lung bleeds. She said that it had been used in some other patients for lung bleeds and maybe it could help Jessica. So Jess was started on morphine and after a few months her lung bleeds were down to only a few a month. Then down to less than one a month and hospice had to leave. Their job is to help with comfort care for someone who is dying .... not getting better. So after a year here, they had to leave. We have kept in touch over the past 5 years and Donna and Linda (the hospice nurse and social worker) even came to Jessica's High School Graduation!

So I called hospice and they sent Donna and Linda out to do an interview. In the meantime they gathered the information they needed since Jessica was no longer a child but an "adult". The rules for admission for an adult is much more strict than that for a child .... and the agency has cracked down and are being more strict about following the rules. So.... in order for Jessica to be able to be admitted into hospice, she would have to have a doctor sign a form saying that he/she believed that Jessica would not survive 6 more months. Also, with an adult, they do evaluations every 2 months and if they see improvement then the patient is discharged until they deteriorate again. Awful, huh?! I felt like they're saying, if you don't die fast enough then you don't get our support. But I knew in my heart that Jessica most likely will survive 6 more months and that none of her doctors would sign anything saying that they believe she has less than 6 month's time.

But the good news is that talking to Donna and Linda, we came up with something of a plan. Donna recommended that Jessica take a long-acting morphine pill and then take the liquid only for break-through pain. That way she won't have the highs and lows like she has been. So I called Jessica's PCP and left a message for him to call Donna. (She had already left a message for him to call her but he hadn't called her yet.) So yay - the PCP called Donna and thought it was a good idea for the morphine pill/liquid.

Jessica had improved quite a bit since we started that. The morphine pill lasts 12 hours so that gives her a steady dose of medication. Jessica is still having pain and at times it is severe... but she is having a lot more times where she can smile, have fun and do the things she enjoys doing.

In the meantime we had a peds cardiologist appointment and he agreed to increase her digoxin and lasix. He feels that she is in the end-stages of her heart disease and that it's progressing. Her congestive heart failure is increasing so she is retaining fluid and feeling the effects of it. We need to get her blood taken this week to check her dig levels as well as blood count, etc.

We go to see the PCP (primary care physician) on Tuesday and then to see the GI doctor on Thursday. I have to take my 2 boys to the doctor later today so I've got a very busy week this week! I'd better head off to bed.

I realize that I've been neglecting my blogs and it had been my intent (New Year's Resolution and all) to increase my posts on here and my craft blog. Crafting is my therapy and I really enjoy being creative.

So thanks for stopping by! I'll try to keep you posted a little better.

Good Medical Sites for Research??

2010-03-18T09:01:00.002-07:00

Hello to all my heart family.
Life has been quite rough for Jessica and I need to do some research. Not only do I need to research medications and side effects but also diagnosis and treatment options. We are running out of options on how to bring Jessica's pain level down and her pain is getting worse. It's so hard to see her in so much pain day after day. The GI and pediatric cardiologist don't have any suggestions either.

The diagnosis is Ischemia of the Bowels amongst others. I would also like to know what all the hoopla is about the pain patch causing deaths? Or is that just the ambulance chasers trying to get money?

I need to know what websites are good for researching these types of things. All info would be greatly appreciated.

Thank you!

Some important changes

2010-03-12T06:28:00.002-07:00

I had to change a few settings due to an inappropriate comment. I'm afraid I'm going to have to approve comments for awhile.... not that I had that many in the first place. LOL The comment was OK but it had an inappropriate link.

Please know that I still want you to leave comments in fact... I also took out my cbox since it hadn't been used in moooooonths. Just one less thing taking up space on my blog.

I hope to update soon and have some current photos.

Thanks for stopping by!

An Amazing Poem by an Amazing CHD "Child"

2010-02-13T07:51:00.004-07:00

The following post was shared on one of my heart support groups by Becca's mother. Becca has basically the same CHDs as my Jessica. Becca may be younger but is more "mature" mentally since Jessica is at around a 7 - 8 yr old level. I had the opportunity to meet Becca and her family several years ago when I traveled to a CHD event. Becca and her mom, Chris, have always been a great support and inspiration to me. They have been through a lot of the same issues that we have but also some very different ones. It's always amazed me how the basic same CHD can be so different in so many ways in two different "children". Also, Becca was the FIRST Christmas socks baby. She is the one who started it all. (If you don't know about the Christmas socks story, here's our experience: JENSENLAND and then click on Jessica's journey with CHD ... it is almost 1/2 way down the page but go ahead and read about Jessica's life before that event).

I got special permission to share this post along with the poem with you and it's my honor to do so. I thank Becca for putting into words what I'm sure MY daughter is feeling. This comes on the heels of a very painful & emotional night I spent with my daughter. Here's your tissue warning.

"Written by our 17 yr old daughter Becca born with TOF (tetrolagy of fallot), PA (pulmonary atresia), pulmonary arterial hypertension. She has had 4 heart surgeries, one surgery for a life threatening infection, pacemaker/CD surgery, 20 caths (or more); 44 pills a day, low salt diet, 02 at night, above 3000ft and when sick. Has been evaluated for a heart lung transplant but at this time can continue to be medically managed.

Becca wrote this for a poetry contest through school last week.

*******************************************

MIRACLE CHILD

I am a miracle child

Struggling the first months of my life

Given a 13% chance of survival to the age of 5

Struggling for years.

Today I am 17

I am a miracle child

Life-saving battle scars adorn my body

Changing my shirt, I see the bright pink scar running down my chest

Always a reminder of my yearning for life

I am a miracle child

Fear is part of me

I am afraid when my heart skips a beat

I fear being in the hospital

Alone. . .

In pain. . .

Not knowing. . .

I cry at the very thought

I fear dying

I am a miracle child

I know I am not like most

Valuing life

I celebrate the morning

I appreciate those who love me

And know

Everyday truly is a gift

I am a miracle child

Being a miracle child

Is

Frightening,

Is

Celebrating,

Is

Accepting,

Is

Struggling

Is

Appreciating

Is

My life

I am a miracle child.

Quick little update:

2010-02-02T05:12:00.006-07:00

So much has happened ... where should I start first? My oldest son, Justen, got married to Ravyn Martyn-Dow on December 19th, 2009. They have been engaged for almost 2 years so it wasn't a huge surprise but the planning of the wedding seemed to be fast a furious! lol Ravyn's mom, Jaqui, did an excellent job of putting things together. I was included in the plans and we used everything that I had purchased 1 1/2 years ago when the "kids" were first going to get married. After reviewing their financial situation 1 1/2 yrs ago they decided to postpone the wedding. Jaqui provided some beautiful decorations and the cake was beautiful and delicious. It was a very nice ceremony performed by Bishop Gibson and the reception followed right afterward.

Jessica was able to attend her brother's wedding and was even a bride's maid. Brandon and Austin were groomsman and did an awesome job.

I don't have many photos but here are a few from my father-in-law's camera:

Here's the happy couple:

awwww... how sweet!

We are a goofy family! hehe... Justen and Ravyn wanted a silly photo and they got it!

Here's the Taylor and Jensen grandparents with the couple. (Taylor on the left - Jensen on the right)

I can't wait to see the photos from the photographer. I'm sure they will be great!

I knew Jessica wouldn't have the energy to last the whole evening so I had her favorite nurse, Renee, help get Jess ready, come to the wedding with us and when Jess got tired, Karl took them both home and then came back to the reception. I was able to just be the mother of the groom and enjoy my evening. I danced with my husband, all 3 of my sons and all 3 of my brothers... 2 of which had come from out of state to attend the wedding. The evening was wonderful. Two of my friends, Janice and Reesa, came and helped in the kitchen. We couldn't have done it without them too! We are so blessed that Jessica was able to be there and enjoy herself. We never would have believed that she would survive long enough to see her brother get married back when she was in a coma and hemorrhaging when she was 3 years old. What a miracle she is!

Bethany

2010-01-15T05:04:00.005-07:00

Happy Birthday Little Moo. It's hard to believe you would have been 9 years old today. It seems like just yesterday that you were born.

In fact, remember the day you were born... it just happened to be one day before my niece, Marissa was born. I "knew" you when you were still a bump in your mum's belly. Your dad came online and shared you and your experiences with me and I came to "know" you. You're an amazing little girl and even though you've left your body behind, you are still very much alive. You've made a huge impact on my life even though I never met you in person. You had a lot to do in your very short life here on earth and you taught so much to so many people. Love. Courage. Strength.... And you loved to smile. Of course you made everyone around you smile too. In fact, many times the stories your parents shared about your shenanigans made me laugh ... all the way across the pond.

Jessica and I got to see you via webcam and saw what a cute little girl you were. You and Jess have so much in common! You both had heart defects, strokes and other complications every step of the way... but neither of you gave up. Every challenge you faced made you fight all the more. You accomplished your mission in this life faster than we would have liked. But you did it!

Bethany, you are very well loved and missed. Enjoy your Birthday in Heaven and dance and play to your heart's content. We'll see you all in good time.

Check Out My New DIGS!

2009-12-03T06:12:00.003-07:00

I love my new background and header on my blog! They were made by shabby blogs and guess what? They have more fun backgrounds, headers and other fun stuff that are FREE! I have a new background on my craft blog too which is different than this one. FUN STUFF!

RAK request for little boy with cancer

2009-11-08T06:32:00.003-07:00

I'm passing on an RAK (random acts of kindness) that my friend, Melanie, posted.

This is a request for Christmas cards for 5 year old Noah. He is in the last stages of a 2 1/2 year battle with Neuroblastoma Cancer. He is not expected to survive to Christmas. The family is celebrating Christmas next week and when asked what he wanted for Christmas Noah's request is to get lots of Christmas cards.

Lets get him some, please send cards to:
Noah Biorkman 1141 Fountain View Circle, South Lyon, MI 48178.

Here is a video link of Noah,

It was just over a year ago that Melanie posted an RAK for my nephew, Marcus. Unfortunately Marcus didn't survive long enough to receive very many cards but our family really felt the comfort of the prayers being said on his behalf. I hope we can bless Noah's family with many cards to shower them with love and compassion.

Thank you so much.

Updates on Jessica and Bella

2009-09-28T00:35:00.005-07:00

In my last post we thought Jessica had broken a tooth... or at least it seemed to be cracked all the way across the tooth and we were hoping to get her in to see the dentist ASAP. Well, thank goodness Jessica's dentist was able to get her into his office the very next day. And the best news is that her tooth wasn't as bad as we thought! They were able to fix it completely. Look at that smile. She is so glad she won't lose her tooth!

Karl, Jess and Jennifer the dental assistant

Unfortunately Jessica didn't handle the pain very well and she became exhausted. We had a rough night that night and she didn't get to sleep until almost 9am the next day. We've had several bad nights recently and it's wearing on us all. Actually, three days after Jessica saw the dentist she got very sick; throwing up and diarrhea for a couple of days. Then I got it. Thankfully nobody else in the family got sick except that Austin felt nauseated and missed one day of school.

Now for an update on our kitten, Bella. As I wrote in my last post, Bella's stitches from her surgery (spade) came undone and got infected. Bella had to be taken in for a 2nd surgery to remove the infected areas and re-stitched. This time with wires. She got stuff stuck in the wires and we were worried about her incision being clean so the 24-hr emergency place suggested we get a baby t-shirt and put it on Bella. We got a newborn size, put it on her and it was HUGE! LOL! We got a large safety pin and pinned it. We also tied a knot in the end of the t-shirt so it would stay over her wound. This lasted about 3 hours then she was almost out of it so we ended up taking it off.

Karl went to PetSmart to purchase the special collar and even the smallest one was too big! Look at poor Bella, she could hardly even hold her head up much less eat or drink! LOL

Is there a kitten in there somewhere? (Brandon is trying to help her)

Are you getting the Disney channel or is that a lampshade from the wild party last night?

Fortunately Daddy is such a handyman and he was able to cut it down and reset the holes, etc.
What a silly little girl!

Here is a little video of Bella all decked out.

Here is Bella a few days later playing with an empty medicine cup. We took the video in the bathroom so she wouldn't run off like she usually does. She reminds me of Jessica... she doesn't let anything get in her way! That cone on her head didn't slow her down one bit. (If the video seems a little long (about 2 1/2 min), it's ok to not watch it all. Jessica does appear in the video several times and seemed to be competing with Bella for the center of attention. hehe!) Enjoy!

I am posting from the family computer because my internal Internet card went *poof*. We are going to have to take it in and see what can be done. Maybe we'll just buy an external Internet card. We just had to buy a new faucet for the kitchen sink because the old was leaked and sprayed water all over anytime we turned it on. Now the stopper in the kid's bathroom sink is broken. Oh, the joys of home ownership! Of course the laptop thing isn't a major crisis or a home ownership thing but it is important to me.... and to the kids. They want me to use my laptop in my craft room and let them use the family computer. LOL

Murphy's Law? Or Jensen's Law?

2009-09-13T06:04:00.006-07:00

If something can go wrong it will? Yes, that would be us!

Jessica cracked a tooth last night and is from the tip of one side of the tooth 3/4 of the way across to the other at a diagonal - which is dangerously close to the g...um-line! I am just praying it doesn't brake off! We are going to contact the dentist early Monday morning and have her seen. We are going to have them just pull the tooth. The last cavity that she had filled just sent her over the edge and it took several days for her to recover from the ordeal. I just know she is going to have a hard time with her tooth being pulled and having it heal but I just can't see putting her through having to have a crown. She is too old to go to the CRS clinic and we sure can't afford a crown... in fact, we aren't even sure if our dental insurance will cover her or not since we haven't had to use it for her yet... but we just want to do what is best for her. She even said: "Let's just pull it out and get it over with!"

Also, we had our two kittens that we kept, Hanz and Bella, spade and neutered last week (at the tune of around $150 including shots & tests for feline leukemia since Bella's eyes constantly run and that could be a symptom of FL but fortunately both kittens are negative for that fatal illness)... well, Bella's wound started to open Friday afternoon after the clinic closed, of course, so I had to call the after-hours place. $85 just to be seen! No thanks... we bought the smallest cone thinggy (that the emergency pet place recommended) and put it on Bella. Poor thing couldn't even lift her head, it was so heavy! So Karl cut it down, drilled holes, etc, so it would fit her. All this happened just as I was trying to get ready to go to my Creative Memories workshop Friday afternoon. Bella wore the cone over night. So on Saturday we took her back to the clinic and $54 later Bella had been sedated, wound cleaned because it was infected and stitched re-done in wire - which has to be removed in 10 - 14 days. She also has to wear her cone until then. So last night I gave her the meds (which she hates)... and I noticed that she has carpet fibers caught in the wires. The vet told us that they leave pointed wire edges out so that the animals won't lick the wound but Bella was licking anyway - hence the collar. Well, what do I do about the carpet fibers being caught in there? I tried to gently tug at some and she went 'postal' on me. I decided to put her to bed and call the 24 hr place again today.

The vet was really nice especially after we told her about Jessica. She gave us some cream to put onto Bella's wound for free and wrote down the emergency phone # for us and wrote her name down. She told me to be sure and mention her name and the emergency place might see us free of charge as a courtesy if they can't get a hold of her. I'm going to call them this afternoon and see what to do about the carpet fibers. The clinic won't be open again until Tues. Well, we have to get Jessica's tooth taken care of on Monday anyway... that is if it doesn't break off before then!

I don't know why just one thing can't go right?! I was up late last night (haven't been to bed yet) with Jess while she was in a lot of pain trying to go poop. No, she isn't constipated. It's just that hard sometimes. :*( I've been trying to jump through the right hoops to get Jess into a pain specialist who might actually know how to treat her type of pain(s).

I'm finally headed to bed (6:30am - which is actually the earliest I've been to bed in about 5 days). Pray for peace. Pray for a quiet day and a restful day today. Pray for us to be able to get Jessica's tooth taken care of tomorrow and for her to be able to handle it well. And even if it seems silly, please pray for our little Bella's wound to heal quickly. She brings so much joy to our family - especially to Jessica. Both kittens do. Thankfully Hanz is doing well and trying to take over Scamper's duties of getting into trouble. LOL (Scampers went to his new home a week ago. I hope he is adjusting well.) Also, don't forget to read my post below about Jessica's bunny, Mary. Thank you so much!

Farewell to Mary Elizabeth Potter

2009-09-11T02:49:00.006-07:00

Mary Elizabeth Potter, Jessica's bunny, died last month. Mary was a Netherland Dwarf rabbit and was about 10 years old when she died.... that's close to 100 human years.

Mary hanging out in her favorite spot: on Jessica!

These two loved each other and Jessica held Mary like this almost every day.

Here is Mary in her small home in Jessica's bedroom. Mary knew her way home from the bathroom, down the hall to the rug in the kitchen doorway, then a big hop across the hallway into Jessica's room and into her cage. Mary loved to chew on empty toilet paper rolls. She would pick it up and wave it around. She would sometimes even throw it with her mouth! She liked pushing that green ball around her cage as it makes noises when it moves. Mary spent the nights outside in a larger cage and came inside to hang out with Jessica in her room during the day. Everyone who met Mary fell in love with her instantly. We all miss her very much - especially Jessica!

Mary was named after a character that Jessica made up several years ago. Mary Elizabeth Potter (the character in Jessica's book) is Harry Potter's long-lost twin sister. Jess has written and illustrated several books about her and her adventures. (I dare any editor to try to make sense of her writings but I know exactly what Jess wrote. LOL) Jessica's e-pal, Matt, sent Jessica a journal that he personalized for her to write all about Mary Potter. That was her first book and it took her about 4 years to complete. Her next books also include some characters from Lord of the Rings! I believe that Jessica recently introduced Link (the character from the "Legend of Zelda" video game series) and Pokemon. All very fun and exciting!

We are starting our hunt for another bunny. Mary was a true dwarf and as you can see, was the perfect size for Jessica to cuddle with and hold. We would love to find another dwarf rabbit - preferably a black one since Jessica would like to name it: Professor Snape! (perfect name if you ask me!)

Please pray for her to be comforted and for us to find her another bunny companion. She misses her cousin, Marcus, immensely and now she missed Mary too.

Jessica with baby kittens

2009-07-16T05:37:00.004-07:00

I hope you enjoy this little video I made of Jessica playing with the kittens. I posted it to facebook awhile back... last week I think? But this is for all you non-facebook believers. haha!

Jessica loves playing with the kittens. We bring them into the house for her to play with - and of course to feed them and let them run around and play - but it is the one thing that Jessica can count on every day that makes her laugh and puts a huge smile on her face. She gets worn out a little from playing with them but it's worth it. We've decided to keep two kittens... the yellow one and the stripped one with golden tones. Jessica is in pain every day so it's good to see her smile, laugh and play with the kittens. ENJOY!

The 3 little kittens they lost their mittens and they began to cry....

2009-06-17T05:07:00.006-07:00

That song keeps going through my head because.... as you know, it's NEVER boring at our house... there is always something going on. The latest: we have 3 little kittens who's mother (who is also just a kitten and a farrel we've been feeding but can't catch) is running out of milk and the neighbor is threatening to kill them if they get into his yard again. So we have to cage them up in an old rabbit cage that my hubby build quite a few years ago (but the bunnies have since died of old age). The cage is large enough for the kittens to run a little and climb around but we get them out and let them play in our house and back yard and spend time with their mother. She is still trying to nurse them once a day and I imagine it's good for her and the kittens. edited to add: we had to stop allowing them to spend time with their mother because she tried to hide them and we were afraid they would end up getting run over. We ended up taking two into our home - the orange one who we named Hanz and the short-faced one who ended up being a girl and we named her Bella. We feed them the wet cat food and they really dive into it. They are so stinkin' cute! But of course they get the food all over themselves and end up very dirty. I've had to wash the stinkers. They do have two little litter boxes and they are learning to use them quite nicely.

I am trying to teach them to drink from a bowl and it is so funny! One tries to bite the milk (special formula from Wal-Mart) and the other two are afraid they will get too wet and don't understand that they need to lick it. The kittens chewed off the nipples of the special kitten bottles so I have to feed them with an oral syringe. Of course we have plenty of those around. lol
Here is the orange one exploring water shortly after we watered the orange tree.
He is very curious but cautious. We've learned that he doesn't like being alone... he wants to be near one of his siblings.

Isn't he she cute? SHE has kind of a flat face and is quite cuddly... well, sometimes she is.

We named this one Scampers and when he was old enough we gave him to one of Jessica's home health aides.

These two look a lot alike but in real life you can see the color differences and of course the one in the back has a flatter face. The one in front we call scampers because he loves to scamper around and get into trouble. He is the one who led his sibblings into the neighbor's yard. Fortunately the neighbor's neice we there visiting and helped us get started feeding these little guys. Unfortunately she was called away and isn't around anymore. She does want to keep Scampers but she was called to duty in Irak... I don't know how for how long she will be gone. I'm sad she had to leave, too. She is a true hero. Not only is she a soldier, ex-police officer but a cancer survivor too. She gave me her address and phone # and I hope we can keep in touch. She is a reall trooper! (every pun inteded) lol

What a cute little kitten! ~~We don't have a name for him yet. Any suggestions?~~ We named him Hanz and call him Hanzie. He is still such a lovable cat.

Scamper has the most adorable eyes!

Brandon with Scampers.

Brandon is such a natural with these kittens. He is also very protective of them.

Jessica also loves the kittens. She has helped me feed them too.

We are going to keep the one with the short face... at least that is the plan for now. We don't have any takers for the orange one and as far as we can tell, they are all boys... but they are still very small and we aren't 100% sure about any of them. The plan is to capture their mother and have her "fixed" and then fix the one we are going to keep. There is one cat that has been eating at our house for awhile and we think he is the dad. He isn't coming around much since Taz has had the kittens. (I named her Taz after the Tazmanian devil because I caught her once and all I saw was fur and nails as she ripped my hands apart trying to get away! LOL) So Taz has chased White Toes away for the most part but I think he may come back more often once Taz has stopped nursing her babies and has been fixed. BTW, the kittens showed up on Jessica's 21st birthday! They were barely able to walk a little and Taz was dragging one kitten towards the food we had left out for her. I went around the corner of the house and found two more kittens! HAPPY BIRTHDAY TO JESSICA! :-) She was so sick that she only got to hold one kitten and then had to go back to bed with her major migraine and vomitting. (My poor baby!) You can read more about that post if you scroll down my blog page. I'm too tired and lazy to post a link right now. I had better get to bed since it's 5:30am now! yikes!

Good night and thanks for visiting! By the way... these cute kitten were discovered on Jessica's 21st birthday! What a blessing they have been and continue to be.

A good day

2009-06-09T04:38:00.004-07:00

We finally had a really good day today! Jessica was finally feeling up to going to our local support group, Tu Nidito. They were having a picnic and we had hamburgers & hot dogs grilled by chef Randy! (one of our awesome volunteers who's wife takes Jess and I to lunch every so often). We visited with another family who have 3 girls, one of which is battling leukemia for the 2ND time. :*( They are so cool tho and Jess had fun sitting with them and talking with them. Austin even came! It's been several years since either Brandon or Austin went with Jess and I so it was a real treat for him to come. Everyone made him feel so welcome that he thinks he will try coming back in September after our Summer break. ; They have made some huge changes at the Tu Nidito house (it used to be a home and then was turned into offices and then used for our support group. They received a grant and another awesome building with 4 classrooms and an office in the back, a lot more parking (including handicapped) and a new playground with REAL GRASS! And not that sparse grass where you see a blade or two every once in a while, but real thick grass. Most of you are probably laughing at my obsession with grass but not if you've lived in Southern AZ. Water is expensive and the sun burns grass up. So most people don't have lawns and the public parks usually have the 1/2 dead grass. My CHD friends think I'm nuts when I've gone to KS and CT to visit them and "oooo" and "ahhh" over how green everything is. {that was back in 2001 and 2003 - I used to have somewhat of a life. :-P}

OK, back to Tu Nidito... behind the house is a patio area which has been also been refurbished. It has a small grassy area and nice waterfall with a small pond. I never had a chance to go to the back to see it all during the construction since Jess insists on NOT taking her wheelchair and she can't walk all the way back there. Little did I know that they had opened up the back wall so we could see from the patio a lot of what had been done.

I took a couple of pictures... unfortunately I didn't get the landscaping before it got dark. I'll have to post some later since it's almost 5 am and I need to get some sleep if I'm going to take Jess to her appointment (and I dare not miss this one!)

Thank you for the many uplifting comments and emails I've received here and on facebook lately. My mom called me after reading my last post and my sister has been very worried about me and Jess... yes, things are quite tough around here a lot and I really need the support, but there are still many reasons to smile and many reasons to laugh - and I believe there are still many more to come.

Thanks for stopping by!

Jessica turned 21!!! But is sick yet again!

2009-06-05T04:27:00.007-07:00

First of all, I want to thank those of you who sent emails, e-cards and snail-mail birthday cards to Jessica. She has been so happy to receive them and asks a lot of questions about who it was that sent them to her: how old are their children, where to they live, do they have heart problems too? etc. There are several emails and e-cards that she hasn't seen yet because she has become quite ill - AGAIN.

Jessica's party on Saturday was a hit and she really enjoyed having people over... but she was quite blue and tired. The party was quite fast since I knew her stamina was very low. When it was time to open her gifts, Grandma Jensen sat beside her to help her since she seemed so blue and tired. I talked to my MIL later who told me that Jess was even shaking a little. But she had huge smiles for everyone and was so happy with not only the gifts but of course everyone who came.

Jess was quite tired and more weak the next few days and I rescheduled an appointment that she was supposed to go to on Monday because of it. The young women from our church came over Tuesday night and celebrated her birthday then. (Tues is their usual activity night). Jess was having a hard time being perky and happy even with cupcakes and pudding cake being served. Several times she leaned over on a pile of pillows on the couch and lay there. I gave her some morphine and got my camera out. She then remembered that she has a camera on her new DSi that she got for her birthday so she had a good time taking pictures of everyone. One of the leaders brought her 8 month-old baby, Malia, who Jessica just loved! The ladies and girls left after about an hour and Jess was in a lot of pain. She said her head and stomach hurt. I wasn't able to get her to bed until around 4:00am due to her pain and when she woke up the next day (1:30pm) she had such a bad migraine. I gave her tylenol and morphine, turned out the lights in her room, turned off her tv and made her have a nap. After sleeping a couple of hours, that usually does the trick. Not this time. By 4:00pm her tummy was hurting even worse and she threw up - a lot. Poor thing can't even sit up by herself during this horrible process so I have to try to sit by her and hold her up. I gave her a pill for nausea, more tylenol and morphine. After awhile she was able to go back to sleep and slept until close to 8:00pm. I didn't know what I should do so I woke her up and tried to get her to take in some fluids. She had to go potty and it was diarrhea. She was able to keep more fluids down, she perked up and ate some soup too. As I was getting her into bed at about 3:00am, her stomach started growling and I had to fix her more soup and crackers. She finally got to bed at about 4:30am. I was beat! I hadn't slept much during the day from worry and also taking care of her. I was hoping that she would be all better by the next day. - wrong!

The next day, Thurs, she woke up again with horrible tummy ache and head ache at 1:30pm. Again she had a nap after meds but this time I got her up at about 4:00pm. She was feeling better, and even smiled and laughed some. Karl was out of town most of the week but got home in the late afternoon and Jess was so happy to see him! Unfortunately twice tonight I sat with her in the bathroom while she tried to go poop - practically doubled over in pain and extremely blue and short of breath just trying to push. I thought she was constipated but no... it was runny and a strange color. She could be having another Ischemia attack or a bowel obstruction. Each time I help her in the bathroom (which is every time she goes) I look for blood. A very bad sign for her. The throwing up and diarrhea are both signs of Ischemia. I'm blaming it on the migraine she had but I can't be certain. She was just sick a few weeks ago with this same thing except it was worse last time. (Although I just don't know how she is going to feel tomorrow). Yesterday she was so sick that I started to have an anxiety attack. I just kept praying that she wouldn't die while Karl was out of town. Things are pretty tough over here a lot of the time.

Jess actually laughed and smiled a bit tonight and was able to eat some soup... but then she had the bowel thing after that. She was crying and asking "why me?" I got her calmed down and told her she needed to not cry but to save her energy to push when she needs to. I don't know why her. Sometimes I feel she has been through far more than anybody ever should and it keeps going and going.

The most amazing thing to me is how she keeps trying to be happy. She tries to keep herself busy to keep her mind off her pain. She amazes me. We talk a lot about death, what it is like, what her cousin, Marcus is doing... she dreams of Marcus every night and they go to Disneyland together. In the last few weeks she has told me that before going to Disney they sit on Marcus's bed and talk. Then they go and check on his parents and his brothers. Once they know everyone in Marcus's family is ok, they leave to go to Disneyland. Jessica told me the other day that when she is in heaven she will check on me every night before going to Disneyland with Marcus. I give her a hug to give to Marcus every night and every day she gives me a hug from him. She is no longer terrified of dying like she was 5 years ago when she had the lung bleeds. Of course I dare the bravest person to NOT be panicky when they are coughing up blood - choking and trying to catch their breath but can't. It is a horrible experience. So we are extremely grateful that she no longer deals with that. We are amazed that she stopped having lung bleeds. (Kudos to Hospice for helping us start the morphine therapy!) Jess has come a long way since then - we all have.

A dear, sweet online friend of mine just recently found out that her husband has cancer. This amazing friend has a lot of cancer in her family and watched her sister fight it many times throughout her life before passing away.... and she also cared for her mother while she died from cancer quite a few years ago. My friend is feeling deflated and kind of like God hates her. Well, who can blame her? I started looking for something that might help her (and myself!) and came upon this talk given by one of our LDS leaders. It's called: "God Loves and Helps All of His Children" Here are some passages from the talk:

"An... essential way to receive God's help is through prayer. We are commanded to pray to God, our Father, in the name of Jesus Christ. The admonition is, "Ask, and it shall be given you; seek, and ye shall find; knock, and it shall be opened." ( Matthew 7:7-8) Heavenly Father answers all sincere prayers.

As the Lord's prophet, President Monson counsels: "At times there appears to be no light at the tunnel's end-no dawn to break the night's darkness. . We feel abandoned, heartbroken, alone. If you find yourself in such a situation, I plead with you to turn to our Heavenly Father in faith. He will lift you and guide you. He will not always take your afflictions from you, but He will comfort and lead you with love through whatever storm you face."

I remember standing over Jessica's hospital bed when she was 3 years old and wondering if she would survive the day... watching her little body in a coma, having seizures, hemorrhaging and fighting a blood infection. We were told by several specialists that she was in BAD shape and most likely would not survive the day. The only person Karl and I could turn to was God. He was in complete control. The doctors didn't know how to help her. Jessica didn't even seem to be inside her body at that time. She didn't look like herself in a coma. We had seen the tubes and wires everywhere when she had her first surgery (at the age of 5 months old) and we knew what she would look like post-surgery... but this was 4 days post surgery and all these complications were making us face the fact that she was indeed dying. It was completely up to the Lord. Our bishop met us at the hospital and counseled us, prayed with us and even cried with us. Finally when both Karl and I could completely and with all our hearts say "Thy will be done"... she started to turn around. The doctors were doing blood tests every 15 minutes and had an OR waiting for Jessica. The cardio-thoracic surgeon told us that they wouldn't take her to the OR until absolutely necessary. He was certain that if he opened her up to find the bleeder then it would cause all her scar tissue to start bleeding again and she would not survive the surgery. (During Jessica's heart surgery 4 days prior, her shunt which takes blood to the lungs was accidentally cut and she bled out for 8 minutes while they finished opening and placed her on the bypass machine. After that all her scar tissue (which was excessive) and other tissue hemorrhaged for quite some time and even after closing they had to reopen to stop some bleeders.) Jessica had been in critical condition and was finally improving when she started hemorrhaging again, having seizures (which was later found out was caused by a massive stroke affecting 5 areas of her brain) and they found the blood infection. Any one of those things could be life-threatening but all of them together.... certainly she would die. You can see the surgeon's hesitancy to perform another surgery! He kept telling us that the numbers didn't match. Jess had lost 1/3 of her blood volume in 4 hours and yet her blood pressure was becoming more stable and her blood count was ok. After about 4 - 5 hours the surgeon told us that he was not going to have to do surgery. He said, "A power far greater than ours saved your daughter today. We did nothing but stand here and watch a miracle."

About a week later Jessica was able to breathe on her own and came off the ventilator. She was blind and paralyzed from the stroke. She was so weak and couldn't take comfort in my holding her. After a difficult day at the hospital I took to my knees at home and prayed to the Lord to help her be comforted. I told Him that it wasn't fair for her to have to suffer through this alone. I have taken care of her through many illnesses, surgeries, therapy, procedures and through all this Jessica at least took comfort in my holding her. That day Jess was extremely agitated and seemed to be afraid of everything. Her vision seemed to be improving a tiny bit but only enough to scare her. I could only imagine this beautiful little girl who was attached to all the wires and tubes being held by someone who sounded like Mom, felt like Mom, smelled like Mom but looked like a monster! She even seemed to be afraid of her own hand and she practically threw herself off of the bed trying to get away from it. So with all my heart to told the Lord that no matter what, I would care for this precious child. I've taken care of her through it all and I'll take care of her blind for however long she is here... just please - help her to be comforted, I prayed. A wave of warmth and calmness engulfed my body and I ended my prayer in tears. I meditated for a few minutes and then called the hospital. The nurse told me that Jessica seemed to have calmed down in the last 10 minutes or so. I had called my sister before I had prayed and she came over and sat and talked with me. I had wrenched my back trying to hold Jess and comfort her for 8 hours that day and the nurse insisted that I stay home and get some rest. Karl was new at his job and had already used any sick time he had so he was working and then had to come home and sleep. He wouldn't be able to visit Jessica at the hospital until after work the next day. So I went went to bed after calling the hospital again and they said she had not only been calm but had even eaten something! I woke up in the middle of the night and called the hospital again. They said that she was doing so well they were considering moving her out of the ICU in the morning! Several of the tubes and wires had come out since my last phone call! The next morning she was in the process of being moved out of the ICU. She was in a double occupancy room and in the 2nd "bed" (crib). I didn't say anything as I walked into her room. She immediately turned her head and cried out, "Momma!" SHE COULD SEE ME! I ran across the room, picked her up and hugged her as we both cried. I stayed the whole day with her. She was still quite sick but she could see and was comforted by me being with her! When Karl arrived at the hospital she could recognize her Daddy, too. She still had a lot of problems with her vision but it was slowly returning. When she went home - 3 weeks post surgery - she still was mostly paralyzed on her left side, her vision was still iffy, her speech was no where near it used to be and she couldn't sit or crawl - much less walk. We had a LOT of therapy and pain to go through still but she did regain most of what was lost.

I have seen miracles and sometimes wonder why I am so privileged to have seen these in my own life and in my child's life. I know that sometimes the miracle isn't in the healing - but in the relief of the pain - the return to our loving Father above.

I am trying to read more uplifting literature and help myself and my family to more readily deal with the trials in our lives. I know God doesn't hate us... He loves us and wants to help us through our trials. We are here to learn and draw near unto Him. I want to feel the comfort of the Lord and help Jessica through her difficult times as well. (who just got up out of bed yet again at 5:20am)

I'm thankful for all of you - family and friends who help us through the difficult times and celebrate with us through the good ones. Please pray that Jessica's pain leaves her body so that she can sleep (at night, lol) and enjoy spending time with her brothers while they are home for the summer break. Pray that I get some sleep and 5 minutes to myself. lol

I almost forgot....

2009-05-11T06:11:00.003-07:00

to update you about the horrible flu we had. It wasn't the SWINE flu .... althought my kids do act like little piggies at times!

Jessica, Austin and Karl are all feeling MUCH better. Karl is still coughing some but at least is able to sleep and work. Austin has been back to school for about a week and is catching up on his school work. Justen is coughing a little here and there but I think it's mostly allergies at this point... in fact, I wouldn't be surprised is Karl's cough is allergy related too. Jessica is still on prednisone but I'm going to call her pulmonary doctor today and see about weaning her off of it. It is making her puffy, ornery and she REALLY can't sleep at night. Fortunately Brandon and I didn't get the cough. My voice was raspy and my sinuses are still giving me some trouble (not extreme) but I think it's allergy related too. I have these same problems every fall and every spring. Lucky me!

I am so thankful everyone in my home that was sick is getting better. I'm exhausted from taking care of everyone while they were sick. I think I need a vacation. My older brother and his family are going to Hawaii later this month. I wonder if I can fit into a VERY LARGE suitcase and go with them? haha!

Thank you for checking in on us and I'm sorry I didn't update sooner. It's been a rough few weeks.

((hugs)) to you all!

Happy Mother's Day

2009-05-11T05:48:00.003-07:00

A little late but... I had a nice mother's day. My sister, Alice, and my mom cooked a delicious ham dinner for us yesterday. My brother, Stuart and his two kids joined us - and of course Alice's hubby and kids were there as was my dad. Stuart's wife, Clarissa, didn't make it out here because she is 58 months pregnant and too uncomfortable to make the 40 minute drive. Well, she's not quite 58 months but she sure feels like it! Send good vibes her way that the baby (Sophia) will come soon - so we can see her and hold her! hehe!

We had such a nice time visiting and eating a wonderful meal. Unfortunately Jessica got tired and felt sickly on the way home. She had an emotional night and didn't get to bed until after 3:00am. I'm supposed to take her to our "Tu Nidito" group meeting this evening but I seriously doubt that she's up for it... and neither am I. It's almost 6:00am and I haven't been to bed yet.

But..... I am still so happy to have spent a nice day with my family. I also got to chat online with my older brother, Brian and my younger sister, Karen. I miss them and their families! Somehow I didn't get to talk to John when he called to talk to MY mom. How rude! lol

I forgot to take my camera but maybe I'll be able to steal my mom's SD card for a few minutes and get the pictures she took.

I hope you all had a great day and an awesome week.

6 Months

2009-04-26T00:00:00.008-07:00

I can't believe it's been 6 months since Marcus earned his wings. It feels like just yesterday since the pain is still so raw - in fact, most of the time my heart can't believe that he is really gone. It seems like just yesterday that he was here at my house, playing video games with my kids and hanging out with Jessica.

Here is one of my favorite pictures of Marcus and Jessica - the last time we would see Marcus while on this earth.

The following is a video that my sister, Karen, made to help with Childhood Brain Tumor Awareness. I've posted it below. *warning - you'll need a tissue!*

Photo and video editing at www.OneTrueMedia.com

I'm sure that to Karen, and her family, each day without him feels like an eternity.
My heart and prayers go out to her and her family. We love you so much!

Here is Marcus's Make A Wish trip story;
posted on the Make A Wish Foundation of Utah's blog.

Marcus, we love you and miss you terribly.
Thank you for watching over us - especially Jessica.
We are so proud of you too.

Love you forever,
Aunt Nancy

Jessica is still very sick....

2009-04-25T22:00:00.000-07:00

6:18pm
I spoke to Jessica's pulmonary doctor this afternoon and am waiting for her to call in a prescription for prednisone and an antibiotic. The doctor said she wasn't able to call it in right then but said she would a little later - I have to say I'm not impressed that it's not 2 hours later and still no call. I've tried calling her back and only received her voice mail but I've left 2 messages... one because I found some prednisone here at the house and just need to know how much to give Jess and two... because I had realized that our dumb pharmacy closes really early on Saturdays and would need the doc to call in the script for the antibiotic to a different pharmacy.

Jessica is wheezing more heavily now and I am getting nervous. I HATE this feeling. Her breathing is different than yesterday morning... it's not as heavy but there is noise in between each inhale and exhale. I'm sure she will improve once she starts the prednisone - at least I hope she will.

Austin is very worried about her too. Of course I didn't tell him how worried I am but I did acknowledge his concern. She has only been "this" sick for two days. She has been coughing for a few days - although Jess said she thought it has been 3 weeks. It feels like 3 weeks!

8:30pm
So.... still no call from the pulmonary doc. She has usually been on top of this kind of thing so I'm shocked she hasn't called me back. I found Jessica's "Asthma action plan" and saw that she can take the Xopenex breathing treatments every 2 hours and the starting amount of Prednisone is 40mg. I do remember giving her that much so I went ahead and gave it to her at 7:00pm. I can't wait all night and I don't want to be having to give it to her in the middle of the night every night.

I had Karl and Brandon move the recliner into Jessica's bedroom. It's a pain to move but I know I'm going to be in there most of the night tonight so I need to be able to get some rest while I'm in there. I remember when we bought that chair - 4 1/2 years ago - it was when Jessica was having lung bleeds and was placed into home hospice. We put it into her room so that I could be there with her and I was - practically 24/7 for months until we started the morphine therapy and the lung bleeds ceased.

Jessica says that her tummy really hurts and that it felt better when she threw up this morning. She wishes that she could throw up and get it over with so that her tummy can feel better. She has been sipping on soda all day and I've been able to get her to eat a tiny bit of jello. She still isn''t taking in very much fluids tho and she says her head aches... she hasn't had her light on at all today except for when I needed to plug in her pulse-ox. She said that her heart felt like it was pounding really hard but when I checked it, she had a good steady beat, pulse was 78 and her O2 level was at 74%. All that is normal for her. I'm glad she wasn't having any PVCs.

I'm giving her morphine for pain but am worried about which of her other 4953847274 meds she should take and which she shouldn't. Should I give her the diurretics? She isn't taking in very much fluids and I don't want her to get dehydrated? She did not get them yesterday for this very reason but do I continue to hold them? Should I give her the Miralax? I don't want her to get constipated and risk her getting a bowel obstruction but again, I don't want her to get dehydrated. She isn't able to swallow her Carafate so she hasn't taken that for 2 days (it's supposed to be taken 3 times a day on an empty stomach to treat gastritis and ulcers). I have given her the Digoxin and Toporol for her heart function and 1/2 of her Xifaxan for her stomach.

Karl is sitting with her right now. I'm trying to decide whether to shower right now or not... chances are that as soon as I become unavailable, the doctor will call. I have several questions for her (see paragraph above) and I want to be able to talk to her myself. Or I could run to the local stop-n-rob for a diet coke... but then again, I'm sure to miss the call.

9:55pm
My mom called and we chatted for a little while. Then Karl realized that Brandon's Sunday clothese were still dirty and we got the laundry started. Jess needed to go to the bathroom and lashed out at both Karl and I twice. She practically snarled as she yelled. She's gotta be in a lot of pain to act like that - - and of course she is on Prednisone. Gosh I hate that stuff!

Still no call from the pulmonary doctor. *ggrrr*

Jessica is very sick - more prayers please.

2009-04-24T13:31:00.001-07:00

Jessica has a fever today and is struggling to breathe. In fact, her breathing scared Austin. :*( She is sleeping and I'm keeping a close eye on her - giving her tylenol for the fever, etc.

Thank you all for your thoughts and prayers.

Quick update - prayer request

2009-04-24T04:10:00.004-07:00

Jessica is not doing very well right now. Her pain level was WAAAAYYY up yesterday, even after a little extra morphine. She has been coughing and is congested. She is needed back-to-back breathing treatments at times. It is so hard to see her in so much pain. She has mentioned quite a few times lately that she wishes she could be in Heaven with Marcus so she could be out of her painful body. I keep telling her that it's OK to feel that way and that when the time comes, it's OK for her to go. We also talk about "enduring to the end". *sigh* So many mixed emotions here. I love every single hug and kiss and smile she gives me (and there are plenty every day!) and I know I am going to miss that.... but I don't want her to be in pain anymore. She's my baby and I love her so much. I would gladly trade places with her if I could but of course I can't. She has a special mission to do and only she can do it. I have been by her side every step of the way and I'm not giving up now... I just wish there were more I could do.

We appreciate all the prayers and love that you share with us. It's so good to know that we are not going through this alone.

Happy Easter - my thoughts today

2009-04-12T04:15:00.004-07:00

I am so thankful for this day - a day to remember that not only did Christ die on the cross for us, but that he gave us the gift of resurrection. One day my daughter will have a body that will not fail her. She will run and play and dance to her heart's content. She won't need oxygen or even glasses (but she says she may want to wear glasses just to look pretty! lol). Of course I can't help but think of my dear nephew, Marcus, too. Jessica dreams of him every night and misses him so much. She is longing to spend time with him and be free of her daily pains.... but she still loves life and her family. We spent time with our Jensen grandparents last night and it was wonderful having them here. I'll post more about that later - including a few pictures.

The following is a wonderful slide show called Reflections of Christ. I felt it was perfect for this day: Easter. The promise of new life. I love this day.

May you find comfort and peace in the message Christ brings. I sure do.

Jessica's GI appointment: caution... poop mentioned

2009-04-11T08:48:00.005-07:00

Jessica had an appointment with the peds GI doctor this last week. Jessica's retired Peds Cardiologist, Dr. D., (who diagnosed her at the age of 2 weeks and has been her PC for 20 years!) came to the appointment with us! He had told me before he retired to keep in touch and let him know of any appointments and that he would see if he could meet us there. We had heard that he still goes to the clinic where we see both the GI doc and the PC (peds cardiology) and helps them out. I emailed Dr. D and he met us there. He knows the GI doctor and has worked with him for years.

I had noticed the week before that she has gained a few pounds and thought it could be congestive heart failure and retaining fluid. The Peds Cardiologist (PC) checked her for edema and it wasn't too terribly bad - so no increase on the meds for it. Well, I think we figured out where she's retaining it... in her belly. Even though she is on Miralax (1 1/2 - 2 doses per day), she is still not emptying her bowels completely. The GI doctor wants us to flush her out. He originally said that with children he has them take a dose of miralax every 20 minutes for 8 doses!!! I just sat there dumbfounded. That's a heckuvalot of Miralax! The GI doc told us that it's the safest way for kids and that it works. He uses this method all the time with children.

Jessica's main problems at this time are twofold: one) she doesn't have the energy to push out the poop (see, I told you it was mentioned!) and b) her bowels are sluggish due to the Ischemia. Even though I make sure that she isn't constipated, it's still really hard for her to "go". Several times a day I rub her tummy to help her pass the stools a little easier.

After all was said and done, it was decided that since Jess has fluid issues and can become dehydrated easily, that we will do 4 doses one day and 4 doses the next. Only clear fluids during that time and a soft dinner the night in between the 2 days. It's going to be a really hard thing for Jess to go through... and me too. I'll have to be with her the whole time. She always needs my help with potty stuff and won't let anyone else in there with her... not even her favorite nurses. I'm also going to have to keep an eye on her and make sure she doesn't get too dehydrated. Jess has been eating more lately - which is good - only it's going to make it harder for her to go through this cleansing process. The GI doc said that we didn't need to do it right away but soon - probably when my hubby would be here to help me out. I am NOT looking forward to this but the GI doc and the PC both said that Jess will feel MUCH better once it's done.

I've read online that ischemia of the bowels can greatly increase the chances of developing an obstruction. The GI doctor said that the cleansing will really help to prevent that. He also told me what the symptoms are of an obstruction. I am just praying she doesn't have to go through that!

I'm not sure why she has to go through all this bowel stuff on top of her heart problems. It just doesn't seem fair. It's becoming more and more of a chore for her to just go poop. I've been committed to helping her the last 20 years, I'm sure not going to stop now! I'm just concerned that I'm soon going to have to BE committed! haha!

The visit went pretty well though and Jess seemed cheerful. She was so excited to see Dr. D again and she loves the GI doc. I like his compliments... he said I don't look old enough to have a 20 yr old daughter so I think we'll keep him. While we were at the clinic Jess wanted to go over to the cardiology side of the building so we did. We saw the PC nurse whom we've known since Jess was a baby.... she had been at the out-reach clinics the last two times we had come into the office so it had been awhile since we had seen her. Dr. K (who did Jessica's last cardiac cath 5 yrs ago) was there and chatted with us and then some of our friends came around the corner! I knew they had an upcoming appointment but didn't know what day it was for. (OK, I had the email but had only had time to skim it and didn't pay attention to the day nor time). So we got to see them too!

After the appointment we went to IHOP for lunch with our dear friend, Susan from Tu Nidito. Susan and her husband, Randy, are volunteers at Tu Nidito and we've known them for about 9 years! They are so sweet! Anyway, we like to go to lunch with Susan every couple of months or so but with Jessica's health declining and the germs out there during the winter, it's been quite some time since we've gone out. Susan has brought us lunch from McDonald's but it's just not the same. We had a nice lunch, came back home and had naps. We are still trying to recover from our outing! Jess gets over-tired and then the pain sets in. She got me up early this morning and I'm still trying to get back to bed. I keep getting phone calls which is delaying my going back to bed.

Our computer had a virus (OK... 200+ viruses!) and was in the shop for almost 3 weeks! After I got it back, I couldn't find any of my old emails. We took it back to the shop this morning and they can't find them either. The main reason I need the emails is because I have saved some CM orders on them and didn't print them up and I need them for taxes! I should have printed them all up and put them in a safe place... I know. I'm also frustrated that I accidentally washed my cell phone so it died, and I lost all my saved phone numbers on there. I think I'm getting my butt kicked here. Here's the score:

concentration: 0
sleep: 0
pain: 100
confusion: 75 (I'm being easy on myself here. lol)
feeling like a dufus: 50

haha... ok, I'm just being silly. I'm not really as "down" as I seem, I just feel overwhelmed a bit.

My in-laws are bringing dinner to us this evening. We usually like to go to their house the day before Easter and have a little Easter egg hunt (plastic eggs filled with candy that grandma puts together and grandpa hides)... but since it is stormy and Jess just doesn't have the stamina to walk around much trying to find the eggs, they are going to bring dinner to us and spend some time here. Jessica LOVES looking for and finding the eggs but has felt bad because she gets so short of breath and feels horrible when trying to do so. We have even brought the egg hunt into the house and hid the eggs in just one room and it's too much for her. Grandma is putting a little basket together for her and will tell her that the Easter Bunny knows how hard it is for her to find the eggs so he left the basket at her house. I'm sure she'll have plenty of candy for the boys too. They don't care about finding the eggs anymore - just the candy. LOL My MIL realizes how tired I am and doesn't want me to have to cook. I'm so glad they are bringing dinner and are going to spend time here. They live about 20 - 25 minutes from us and I hope they drive safely in this rain.

Hope everyone has a great weekend and a Happy Easter. Thanks for stopping by!

Updated on Jess, me and Computer viruses!

2009-04-02T02:42:00.003-07:00

I took Jessica to the Peds Cardiologist on Tuesday and the visit went pretty well. We were there quite awhile for tests and we still have to go to the lab for blood work. They did an EKG and an Echo. Everything looks about the same as last year: her right ventricle is very large, aortic valve is leaking between mild-moderate range, shunt is open and working. We discussed her pain and the fact that she is in pain 99% of the time... sometimes her level is up to 9 1/2 (according to Jess) and she cries when it's that high. The pain sometimes wakes her up during her sleep and then she can't get back to sleep for awhile. The Cardiologist reminded me of his conversation with the GI doc and since there isn't anything they can do to prevent the pain, he recommended sending us to a pain clinic. I'm hoping and praying that they will be able to make her more comfortable and increase her quality of life. I haven't had a chance to call them and set up an appointment yet but I hope to do that in the next couple of days.

We had to cancel an appointment with the psychiatrist yesterday since Jess must have gotten overtired from the visit to the Peds cardiologist and didn't get to bed until after 3:00am. She then woke up a couple of hours later in pain and didn't get back to bed until 8:00am. I didn't get to bed at all that night so I had to try to sleep when she did during the day and then after her aid came in the afternoon, I had to take another nap. I ran out of one of my own pain meds and have been in such pain. Fortunately Karl was able to pick it up at the pharmacy so I'm taking it again.

I saw my primary care doctor for my fibromyalgia and he sent me for blood work, etc. I haven't heard back from him yet but I'm supposed to schedule my annual female stuff. yuck! But it needs to be done. My doctor told me that two of the best things to treat fibromyalgia is sleep and exercise and I'm not getting much of either. It's frustrating to not be able to be on a regular schedule but there's not a whole lot I can do about that. Jessica and I were talking about feeling left out. She feels left out a lot since she can't go and do what her brothers can do and they rarely play with her. They are boys and not very interested in girly things. Good thing that her home health aids can play Barbies and Pokemon games with her. She really enjoys that. Anyway, back to my story, I was telling Jess that I felt left out a lot when I was in High School since my mom was sick for a long period of time. I took care of my younger siblings after getting home from school and I had to cook dinner, bathe my youngest brother who was 2 yrs old at the time and get him to bed... after that I had to stay up to do homework and then get up early the next morning to go to band and school and start all over again. My youngest brother even called me "Mom". My friends were out having parties and hanging out while I was home being a mom. Jess asked me if I ever wondered if I would get married and be a mom and I said sure... ever since I was a little girl I wanted to get married and have a family. She asked me, "You probably didn't know that you would have a daughter with heart problems, did you?" I responded that if I had my choice of a bunch of babies, I would have chosen her. I'm so glad that I'm her mom. Jess hugged me and I asked her if she would choose me for her mom and as we were embraced, she nodded yes. I told her that we were supposed to be together as a family and we will be a family forever. She then started talking about what a great dad she has and brothers, grandparents, etc. She just loves everyone so much.

Well, it's 3:30am and Jess hasn't gotten up since I put her to bed about an hour ago so she must be asleep.... and I'm about to fall asleep here at my laptop. Oh, speaking of computers... our family computer has been down for over 2 weeks now. It crashed and I found a virus but couldn't get rid of it. Karl took it to a place we had worked with before and they found over 200 viruses! Austin has recently downloaded a game online (without permission) and we wonder if that was one of the major viruses. They guy at the shop had to completely wipe the hard drive clean and reinstall windows, etc. He said that one of the viruses had disabled the Windows updates so we started getting more and more viruses. WHO DOES THIS? The last virus had a window pop up that looked exactly like Windows and it wouldn't allow you to start windows without entering your credit card number... and it said that it wouldn't be charged. We knew that was a scam and after finally being able to access our AVG anti-virus, we found multiple Trojan viruses but we couldn't get rid of them. I hope other people are smart enough to not put in their credit card numbers when that thing pops up!

As if we don't have enough going on, I'm struggling with dental and medical insurances denying payments for things they should have covered. OY! What a pain.

Thanks for stopping by..... and if you get a chance, hop on over to my craft blog: FancyCrafty{Me} where I''ve uploaded a few new cards. If it weren't for my crafts, I'd be in a loony bin, so thank goodness I have that!

Jessica and I have fun in the craft room

2009-03-10T09:21:00.003-07:00

I am re-posting this from Jessica blog, Jessie's Favorites.

We love making fun things in my craft room. Jessie decided to make a card for her grandma. I had received a fun stamp in the mail and I stamped the image for Jessica. She then colored it with her markers. Today she decided to use one of my punches and some of my fun paper to make a card with the image that she had colored.

Here she is putting some brads on the card.

Securing the brads onto the back of the card.

Somebody is having fun!

Here is the card so far.

All done! Time to relax.

Now isn't that the most beautiful card you've ever seen? Of course it is!

Thanks for stopping by!

Random photos

2009-03-06T06:49:00.003-07:00

Grandma Taylor and Jessica hangin' out in the new craft room. Jessie has her own corner for her Barbie castle. What fun! Also, notice the necklace that Grandma is wearing? Jessica made it for her! Jess sure loves her grandparents.

Brandon having a nap. He really was asleep! Don't worry, I woke him up and made him turn over... that is after Austin and I had a good laugh.

Charlie enjoying the sunshine coming in from the bay window in the craft room. Who says cats don't like birds? Charlie is cuddling with one in this picture - just look at his tail!

Charlie, are you all nice and warm laying on the heating pad?

Too bad it's not even plugged in!

Notice how Charlie matches the blue heating pad. He is such a pretty color - Russian Blue. Too bad he's not very smart. LOL

I hope you enjoyed these random pictures. I'll be back soon to post more!

Snow on Justen's Birthday: 2-10-09

2009-03-06T06:38:00.004-07:00

Justen went out to play in the snow at 2:am on his 23rd birthday! It rarely snows here so it was a real treat!

Here's another picture of him in the snow. I can't believe my baby is this old! Although he has quite a bad case of dandruff. LOL

Graffiti on my car in the snow! I wonder who did it?

The snow stuck to the ground for a little while but it was gone by noon.

Jess really wanted to go out into the snow but I'm a mean Mom and wouldn't let her. It was late and I really wanted to get her to bed... not out in the snow and cold!

Life's a Bit Rough Around Here

2009-03-03T04:53:00.007-07:00

But that's the way it goes. Miss Jess is in a lot of pain every day. The first thing she says to me when she wakes me us is: "Hi Mom. I feel HORRIBLE! and flops down onto my bed." I help her in the bathroom, make sure she's taken her carafate (meds for her tummy - has to be taken on an empty stomach) and give her some morphine. When it's time for her to eat, sometimes all she can eat is jello - or even just 1/2 of a small jello cup. She will drink some soda though. The last few days she has wanted a "Ham & Cheese Hot Pocket" so that's what she's had. She has eaten the whole thing or only left a bite or two. I'm so glad we have found something her tummy can handle. That is until she gets tired of them. She eats off and on during the day and will have a few snacks at night. I have to make sure she eats enough of her tummy will be in extra pain later. She gets morphine several times a day.... and she gets tylenol too.

Her sleeping is less than desirable... even if she gets to bed by 2:00am (which is early) then she will sometimes get up just a few hours later in pain and needing morphine and sometimes needing to eat. Sometimes she will go right back to sleep and sometimes she is up for several hours. Other times she may get very emotional and not even get to sleep until long after sunrise or even after Karl and the boys get off for the day - maybe 9:30am. It's getting to be hard work just to feed her and help her get her rest. I sometimes feel like I'm caring for a 130 lb, 20 yr old newborn with the schedule she has.

On top of all this my fibromyalgia has been acting up - as it usually does this time of year - and my poor body just can't figure out WHEN or HOW to sleep. I can't take a sleep aid because I have to be able to help her if/when she gets up. She takes enough sleep aids to put both of us out for 12 hours but that's another story. LOL!! Sometimes I stay up even after she is in bed because it is the only time I get where nobody is demanding my attention or needs something. I know it's not a good idea to do it too often - my body is really wanting to sleep right now, for instance - so I had better hurry.

The big news that I've been dreading posting is that Jessica really does have Ischemia of the bowels - both the GI doctor and the peds cardiologist checked out her CT scan. So in layman's terms... the artery that takes the blood to the gut is narrowing and she is getting less and less blood flow to that area. On top of that, due to her sturcture of her heart, she gets much less oxygen in her blood than normal so that's double trouble. Ischemia can cause pain (severe pain), diarrhea, constipation, an obstruction, necrosis and death. The only way to fix it is to do surgery and replace that section of the artery.... except that with Jess, that's not possible. Her whole artery system is going bad. Her whole bowel system is going too... She has to have 1 1/2 - 2 times the normal adult amount of Miralax just to keep her pooping every day. The only treatment possible is to give her morphine for the pain and more Miralax to keep her "going". The things we need to look for is vomiting and blood in her stools. These are signs that her intestines are necrotic and she probably won't survive more than a month or two. The GI doctor said that if that happens then we need to make the decision as to whether to take her to the hospital, call hospice or both. WHAT? I can't imagine her hanging on for a full 2 months while vomiting, etc. Karl and I have talked about it and if it comes to that point, we may have to discontinue all treatment except for pain relief. That would mean taking her off her heart meds too. Her previous pediatrician told me recently (when I told him about Jessica having 10,000 PVCs (arrhythmias) every day and her risk of ventricular tachycardia - he said, "that would be the best way for her to go, really"). He didn't say it in a mean way, he had been through all of Jessica's ups and downs including strokes, lung bleeds, etc. He meant it in a positive way. V-Tach would be fast. The GI thing..... not so much.

We have been chocking on this news. It just seems we get over on hurdle and we are faced with yet another way for her to die. I just don't want my baby to suffer. She has already been through so much... I just want her to be happy.

On the other hand, Jessica has been spending a LOT of time with Marcus. They go to Disneyland every night and ride all the best rides, have races as to who can eat their cotton candy the fastest and laugh and laugh. They even get to ride on Jessica's ride that she invented called "Genie's Magical Lamp". Several years ago Jess came up with the idea for this ride and has wanted Disney to make it. Every day Jessica gives me a hug from Marcus and I tell her to give him a hug back from me. She told me that every time she dreams about Marcus, it makes her sadness that he died go away a little bit more. I told her that I think it's awesome that she gets to spend so much time with him.... much more time than when he was alive. I also told her that Marcus is telling her that he is OK. {She has told me that the first few times she dreamed about him, she was crying and he asked her, "why are you crying?". She would tell him that it's because he died and that she missed him. He would then give her a big hug and smile and tell her that he was OK and that she didn't need to worry about him.} We talk about how he is having fun in heaven and he will be there for her when it's her turn to go home. Jess said that she isn't afraid at all when she is with Marcus. She even goes on the biggest roller coasters with him and doesn't get scared when in real life she is very afraid of heights and hates going on rides. I asked her if she has her oxygen on while going on the rides with Marcus and she said, "No! And I don't need my glasses either". She even said that she RUNS to him and they give each other a big hug. She says that everyone at Disney know her and Marcus and they let them go to the front of the lines and they don't have to pay either. LOL (it's just like Jess to be the center of attention and the center of every one's hearts!) Karen (my sister - Marcus's mom) told me that Marcus always was a daredevil and he loved to go on roller coasters so I'm sure he is enjoying his trips to Disneyland with Jessica too. Marcus missed his only opportunity to go to Disney when his band went but he was too sick with his cancer to go. Jess will never get to go to Disney - at least not while she's awake! LOL She is really glad for these dreams. I am so thankful for her dreams too. I miss Marcus. I miss Karen and her family too.

I am so grateful for my family and my friends. I can't get through this without you. It's been difficult lately with my being sickly and not being able to get out much. Seriously - sometimes I walk out to get the mail just so I can say that I went outside that day. I really need to try to go for walks... even short ones to try to get my mojo back. I have been making some cards and I did get to go to a card class last week. I am completely enjoying my new craft room that my dear, sweet husband built for me. I need to get it cleaned up a bit and post some pictures. You will be drooling! LOL

Thank you so much for stopping by and if you get a chance, head on over to my craft blog, FancyCrafty{Me} and oooohhh... and ahhhh... over my cards. :-P

Of course any prayers would be gladly accepted and appreciated.

((hugs))

Remembering Bethany

2009-02-21T05:53:00.004-07:00

It was four years ago today that Bethany lost her battle to CHD (congenital heart defects). She was diagnosed in utero and her father, Dan English, went online to find information and support. That's how I came to know them.. (Dan, Jo & kids)... there's no way we'd meet in person since Dan & co live in the UK. At any rate, we became good friends even when Bethany was called "Bump". After many ups and downs she went home and flourished. She was like my Jessica... she would get "blue" and have to sit down after a short walk and her smiling lips would turn purple. She truly was an angel here on earth. She earned the nickname "Little Moo". hehe

Sadly, she earned her wings after multiple complications following a very complicated heart surgery. I knew things were turning for the worse and several of my online friends and I were chatting about it. I called the hospital in England and spoke to Dan himself. He knew at that time that she was gone... but her body remained there... barely. My heart broke when he said, "no parent should ever have to bury a child". I don't know if he remembers saying that but it's true. No parent should ever have to bury a child... and yet my sister did it just 4 months ago... and I know eventually I will have to. It's hard...

But what if I had never "met Bethany? Her life truly enriched mine. I remember many of her antics... she wore her mum's undies on her head and danced around, tried drinking from the dog's bowl, climbed on her older brother, Jaysen all the time and of course had her daddy's and mum's heart strings tied around her finger. She went through so much in her little lifetime and would always bounce back. She truly reminded me of Jessica. Only the last time she couldn't bounce back. She had other things to do. She is greatly missed but she still touches many hearts around the world.

Bethy, you are loved and I know that some day I'll get to meet you in person. Until then, dance all you want - you won't get blue!

We survived the holidays!!!! Prayers for Jessica's tummy

2009-01-19T05:22:00.005-07:00

We had an enjoyable Christmas but Jessica and I got waaaaaaaaaaaaayyyyyy over tired. We are still trying to recover. LOL!

I am working on a nice post about our Christmas activities - with pictures! But it's so late that it's early! I had better get to bed.

But first a prayer request: Jessica is having a lot of tummy pain so pray for her to feel better. The Ischemia of the bowels can be very painful as well as the gastritis and ulcers that she has. I feel so helpless when she has bad days - which has been the last 3 days. We all appreciate all your love, thoughts, and prayers.

Here's a sneak peek of what's to come:

((Hugs))

Thanksgiving

2008-12-02T08:15:00.007-07:00

I've been such a bag blogger lately! I'm so sorry! Life has a way of taking over and unfortunatley I don't always get to blog as much as I would like.

We had a wonderful thanksgiving! Justen and Ravyn both had to work in the evening/night and weren't able to make it. :*( Karl had to work too but was home early enough that we were still able to get together with family afterwards and have a good time.

Here are a few pictures:
The MEN

Chuy, Grumpy Gramps, Stoobie, Karl and John

The GIRLS:
Marissa, Natalie (in back), Julie and Jessica in front

Karl teasing the girls
Marissa, Jessica and Julie (my sister Alice in back)

The silly girls
Marissa, Julie, Jessica and Natalie
Notice Brandon being silly in the background between Julie and Jessica's heads. LOL! My brother John and Karl in the background to the right.

Yay! Brandon finally got to be in a picture with his sister. Silly Marissa kept popping her head up every time we tried getting a picture with Jess and Brandon.

The BOYS:
Austin, "little" Stuart being held by Brandon, and Jesse. Baby Hyrum was alseep and didn't make it into this picture. We got plenty of pictures of him later.

Jesse playing his violin.

My youngest brother, Stuart, and his wife Clarissa (who is expecting a baby in the Spring! yay!)

My youngest sister, Alice, and her husband Chuy

My "middle" brother, John, and his wife Mandy. They came from CA to spend Thanksgiving with us. They also announced that they are putting in paperwork to adopt a baby. YAY! We are so excited for them. :)

And here's Me with my sweetheart, Karl. I'm the oldest girl and 2nd to the oldest of my siblings. Ignore the silver streak in my hair... I'm going for the Pepe Le Pew look. LOL!

Here is Alice's baby, Hyrum. He is 4 months old and couldn't be cuter!

Hyrum is such a happy baby but he doesn't like to smile for the camera. It took a lot of skill for me to get these two of him smiling. hehe! Don't you just want to smile looking at him?

Here is Mandy with Hyrum. We figured she needs some practice for when she gets a baby through the adoption agency. :D Hyrum was so intent on grabbing the red cups so he was given a clean cup to play with. He kept grabbing at it and it would go flying so his dad put the cup on top of his hand. He was also going after his red teether. He was the life of the party.

We all had such a great time at Alice's house and the food was very tasty. Jessica really had a great time playing Barbies with her girl cousins. Of course she got very worn out and is still trying to catch up on rest (me too!), but it was well worth it.

Oh goodness, I just realized that I didn't post any pictures of my mom! My mom was the only one who remembered her camera so of course she took most of the picures. (I took the ones of Hyrum). I'll have to look through my pictures and see if I can find any of her.

Marcus's Memorial

2008-11-20T11:49:00.005-07:00

Marcus's Memorial

Click on the link above to read Marcus's obituary. There is also a guestbook that you can read and sign if you like.

Another prayer request....

2008-11-17T12:16:00.003-07:00

I know I've had a lot of prayer requests lately. This time the prayers are for the family of a childhood friend of mine. Stephen Bowman and I grew up together - literally from birth to High School graduation. We were the best of buddies. Before school age we hung out together since our families went to church together and were friends. In grade school we ate lunch at each other's homes, we biked and roller skated together, did gymnastics together and of course went to church and other activities together. In High School (we had combined middle school & high school) we took art, band, choir and other classes together. Stephen was a brilliant pianist and he played for me many times when I performed (singing - yes, I used to sing solos). He also accompanied me when I played my clarinet. My mom accompanied me many times but Stephen (aka: Stevie) played for me as well. Our senior year in High School we had two of the leads on the musical "Oklahoma!" together. I played Laurie and he was Will. We had so much fun over the years, playing together as kids and then doing the drama, art and musical stuff together as teens. We would try to beat each other's scores in different subjects but he usually won - he was valedictorian and I merely an honor student. lol We challenged each other in art class and I have to say we were both pretty talented. ;)

So why the prayer request for his family? Well, it seems that a few days ago Steve wasn't feeling well and couldn't sleep. He took a couple of sleeping pills and went to bed... and died in his sleep. No pre-existing conditions... he just died. He leaves behind a wonderful wife and 4 children. I don't know his family very well since we didn't keep in touch much after High School. We just recently reconnected on facebook and I was so excited to get caught up with him and his family, etc. Now he is suddenly gone.

I'll miss my childhood buddy. Even though we haven't been in contact much, it's just an empty feeling knowing that I CAN'T contact him or see him again. I met his wife once, many years ago, (back when I was pregnant with Jessica), but that was the last time I remember ever seeing Steve. Here is a picture of his family that he left for me on my facebook wall about a month ago. Please say a prayer for them that they can get through this difficult time.

Marcus John Russell has earned his wings

2008-10-28T04:17:00.007-07:00

From Marcus's carepage:

"Marcus John Russell passed away on October 26th, 2008 around 5:00am in his home. He fought to the end. He will be deeply missed by friends and family.

There will be a viewing held on Wednesday, October 29 at Nelson Funeral Home (162 E. 400N. Logan, Utah) from 6:00pm to 8:00pm. Services will be on October 30, at the LDS Providence South Stake Center, (360 E. 450 N. Millville, Utah.) at 12:00 pm. with a viewing prior to the service from 10:30am to 11:30am.

Thank you all so much for your continued prayers, support and love."

I have been trying and trying to figure out in my head how to post this very sad news. Of course I've been quite busy helping my children deal with all this and of course helping Jess with all her needs... including her wound. But I think I'm in shock. I can't believe that he is really gone. My family is having a hard time, especially Jessica and Austin. We seem to take turns falling apart and holding each other up. I haven't cried yet but that will come. Last week was the worst for me emotionally. I knew that Marcus was suffering. He was blind, couldn't talk much and was in a lot of pain. He was so dizzy and weak that he couldn't even roll over by himself. He went down hill from there. Weds night I fell apart and wept while in the shower - my crying place. I've been very emotional all week thinking of him, his parents and my mom who have been taking care of Marcus. When I talked to my mom on Sunday at about noon (she had called earlier but Karl and I were both sleeping so she called us back later. She knows that Jessica keeps me up all night. Karl instantly became emotional. We tend to work that way... Karl and I usually take turns falling apart and it was his turn. Austin told his dad, "Marcus is in a better place." and Karl said, "yes, and he isn't blind anymore!" When Jessica woke up I told her in private that Marcus had died and she cried and cried. She asked a lot of questions and I thought it was interesting that she was concerned that the next time Aunt Karen and Uncle JR came, Marcus wouldn't be with them. It is going to be so hard on all of us.

Karl and the boys were dressed and ready to go to church when we got the news and they decided to stay home. We spent the day & evening on Sunday talking about Marcus and where he is. My dad came to town and just happened to come to my house just as we were sitting down to have a "Family Home Evening" about Marcus and those who have gone on before us & the plan of salvation. My dad was able to contribute a lot to the conversation. It was almost as if we had planned on him to come to our Family Home Evening. Actually, my dad is always very late so it was better than if we had invited him to come. LOL

Marcus said his good-byes to his brothers and parents on Tuesday. Aaron (Marcus's brother - age 14) left to go on a band trip the next day - with Marcus really encouraging him to go. Aaron said that the band dedicated their whole year's performances and their performance Friday night and the band did the best they've every done. (Marcus was a member of that marching band and they have been soooooo supportive of Marcus the last 2 years) Friday night (at least I think it was Fri) Karen said to our mom, "it's as if Marcus isn't even here... I can't feel his spirit here"... and my mom said, "of course not. He's at the band competition." Aaron said that when they performed they could all feel Marcus with them. They made it to the finals!

The band members have been so supportive of Marcus. Two years ago when Marcus started the chemo and radiation his hair started falling out. When he went to shave his head, a bunch of band members shaved their heads too! Marcus's dad, brothers, uncles and cousins (all the guys) shaved their heads too. About 6 months later my hair was long enough that I cut 10 inches off and donated it to Locks of Love in Marcus's honor. They recently put on a fund raiser at their school for Marcus and his family. Marcus was able to attend and was so grateful for their help. You can read more about these events and see pictures on Marcus's carepage. www.carepages.com MarcusRussell (name for you to enter) and on Karen's blog: I Made It Through Another Day

Last November the Russells came to town for Thanksgiving. We had dinner at my youngest sister's house (Alice) but Jessica was too sick to attend. Karl stayed home with her and I took my boys and went to visit and eat. We had a good time and it was quite noisy with all the kids running around. My youngest brother, Stuart, and his family attended and my mom's sister came down from Mesa with her youngest son who is Jessica's age. Since Jessica wasn't able to go to the dinner, the Russells came to our house to visit the next day. It was nice since there weren't nearly as many people and Jessica got to really visit with them that night. I have some great pictures of that night. We didn't know that it would be the last time we would see Marcus... but of course we knew it was a possibility. Marcus was in remission at the time but with the type of cancer he had we knew it would come back. We just didn't know when nor how bad it would be. And of course there's always the possibility that Jessica could "go" at any time. She should have died many years ago but for some reason we have been blessed to have her here all these years. (I won't go into all the details right now but we have nearly lost her many times so we always have that in the back of our minds... this could be her last birthday, this could be her last Christmas, Thanksgiving, trip to the mall.... etc.) I made sure to take a few pictures of just Jessica and Marcus together and I'm so glad I did!

Here are all the cousins who were at Thanksgiving dinner last year in '07. Of course Jessica wasn't there so of course she isn't in that picture. These are all the kids... we also had 8 adults visiting with each other. Marcus is the one in the back, left-hand side with the hat on.

Me and my little sisters. Alice, Karen and of course me.

This was taken at our house. Marcus and Brandon playing video games.

Here you can see Jessica seated in the recliner to your left (Uncle John in the striped shirt in the background). Macus and Brandon on the couch and Noah and Jackson on the floor. Noah is the one pretending to be a bunny on the floor. LOL

Jessica and Marcus together. I just love this picture.

Here they are goofing around. Too bad this picture is blurry but it's neat to see these kids laughing, having fun and being regular kids.

One year ago Jessica's friend gave her the alligator that she is holding. That was shortly after Marcus was diagnosed and had surgery to remove his brain tumor. Jessica named the Alligator "Marcus because he is so strong, just like an alligator". The star that Marcus is holding is something that Jessica made for him at our local support group, "Tu Nidito". They were asked to decorate their star for someone who inspired them. Jessica said that she made it for Marcus because he is strong and is helping her be strong too. Jess saved that star for almost a year until she saw Marcus again. If you have ever seen Jessica's room, you know it was quite an accomplishment for her to keep it that long and not lose it! (her room is the black hole! - once something goes in, it never comes back out!)

My friend, Melanie from Hands, Heads and Heart has posted about Marcus and his family here and here. She has graciously requested prayers and RAKS such as cards to be sent to the Russell family. We are hoping that Marcus's story will travel the world since Marcus wasn't ever able to do so. He was (and is) a remarkable young man. We have been so fortunate to have him in our family for 17 years here on earth.... and for all eternity to come. Jessica and I have talked about how nice it is that he will be there when it is her turn to go to heaven. Hopefully it won't be too soon.

Melanie, and I were discussing the effects of a rock being thrown into a pond and what the ripples represent. If you do something good then it will affect all those around you like the ripples in the pond. Melanie said,
"Marcus is a huge ripple who is and will continue to affect many people with his story."

Here is a picture of Marcus that was taken just over a month ago. His face is swollen from all the steroids to help keep the swelling on his brain down. Look at his eyes. His eyes see beyond this life. In fact, he was already starting to lose his eyesight when this picture was taken. He couldn't walk because he was too dizzy but look at his eyes. He knew he was terminal at this point but still smiles. His eyes see something better to come. Something we can't see without faith. Marcus has that. His strength and faith have been an inspiration to me.

Here are the Russells. They are such a great family. Please continue to pray for them.

If you pass on this prayer and RAK request, please let me know so that Melanie and I can go to your blog and thank you. Here is what Melanie posted on her blog:
"If you are able, would you consider putting Marcus's pic and part of this post on your blog? Can we let others know who he is, that he was here? When Karen asked Marcus what he would like the world to know about him and he said, "I am the dark night - I am batman". (When you read their blogs, you'll see they are always ready to lighten the mood with a joke, no matter the circumstances) Nancy says: "He is a man of few words and he doesn't even want to think about what to say. (But they were excited about this idea of posting his pic and gave it their blessing) "BTW, Marcus has always been a fan of batman and a WWII buff. (Family) recently took Marcus to an air force base and the airman presented Marcus with a helmet and other things. They were impressed with Marcus's knowledge of the jets and he even knew all about a new one that will be available next year."

You can also leave comments for the family and get updates at: http://www.carepage.com/ (set up an account and then click on "visit a carepage".... enter "marcusrussell" no spaces - and it will take you to it)

Here is an address for RAKs (they gave permission to list it here)

I Made it Through Another Day
http://lagorda67.blogspot.com/
Karen's address is:
Karen Russell or Marcus Russell
100 W. 500 S
Providence, UT 84332

Thank you all so much! Your thoughts and prayers really do help. As I had posted before, we aren't able to travel to the funeral this Thursday. We are going to have our own little memorial for him - also on Thursday after Karl gets home from work. I'm also praying that all my family who are traveling to attend the funeral are protected and travel in safety.

Prayer Request for Marcus and Jessica

2008-10-25T05:17:00.003-07:00

Please pray for my nephew, Marcus, and his family. As you have read in my previous posts, he has brain cancer that came back with a vengeance. The new chemo treatment was not working and after a lot of thought, tears and prayer, he and his parents stopped all treatment. He knew he was not going to survive this time. Here is the message that was posted by my sister on Marcus's carepage yesterday:

"I always hate to post somber news, but I know there are a lot of people wondering how Marcus is doing. He really is deteriorating fast. We are pretty sure that he could "go" at anytime now. He is so week, unable to see or even speak much. His breathing is getting more and more erratic and his pulse is fast and unstable. He has been in more pain, so we are adjusting his meds to keep him more comfortable. He mostly sleeps, he doesn't eat and only has very few fluids since he can't swallow much. We are just praying that he goes quickly so he doesn't suffer.

Thanks to all those who are getting Marcus's name out there for good thoughts and prayers. Thanks for all the well wishes, comments and prayers you have left here and on my blog. It is so wonderful to see how many love and care for us and especially Marcus.

With much love...

Karen"

I'm sure that you all remember my most recent post: Prayers for Marcus where I told you about Melanie's prayer and RAK request. At the time that Melanie first contacted me about doing the request we didn't know that Marcus would get so bad so fast. Melanie was hoping for cards to be sent to him to cheer him up. It seems as though the cards should really be sent for the family now. Marcus seems to be aware when people are in his room but isn't able to carry on a conversation. Of course any cards, email and messages left for him will be read to him but it's possible that by the time any cards that are sent reach their destination, he will no longer be with us. Please don't let this discourage you from sending cards to the family though.

I've been looking over some of the wonderful comments left on Karen's blog and Marcus's carepage. I see that some of you have already left comments and my sister and I truly appreciate it. I would like to thank you for doing so and encourage you all to continue to support Karen and her family as you have done for me and mine. (I sure hope I'm making sense because it's after 4:00am and I haven't been to bed yet.)

It's been an emotional and exhausting day for me. Jessica had to have her wound care done today and it was quite painful since the previous nurse hadn't pushed the sponge down into the wound as far as she should have and the nurse today had to open that part up again. *tears* It's been a very difficult few weeks since Jess obtained her wound (which I still have nightmares about), had surgery, had to go to the surgeon's office every day for wet to dry wound care and finally getting the actiVAC installed and set up on home-care. The wound seems to be healing pretty well except for a couple of areas... a possible small hematoma or abscess that we are watching at the top of the wound and then the center of the wound seems quite wide. When we saw the surgeon on Monday he said something like, "she may not need a skin graft after all." He has NEVER said anything about a skin graft! Let's just hope and pray that he is right and that she won't need a skin graft and that the area at the top of the wound resolves it's self. Jessica is not showing any signs of an infection and is still on an antibiotic for a few more days... so hopefully this will stave off any bugs. It's been very interesting to have to deal with two tubes. The oxygen that she always wears and the tube from her leg to the actiVAC machine. If I haven't mentioned the machine before now and you are interested to know what it is, go to http://www.activac.com/ . I haven't had a chance but I plan on posting a lot more information here (with pictures) about Jessica's wound and how this machine is really helping. We are hoping that she will be able to be disconnected from it next week! Jess is not able to have regular baths (sponge baths only) and she finally we able to feel up to leaning over the tub to have her hair washed after not having it done for 1 1/2 weeks.

Karl and I went to dinner last night (Fri) and discussed a lot of things. I realize that it's very unlikely that we will be able to attend Marcus's funeral. Jessica's wound is still a major concern and she neeeeeeeds me. Of course Jessica isn't up to traveling so my mom had suggested that Karl go and take the boys. Karl and I discussed it at length and we feel that it would be best if we stay together as a family and have our own memorial for Marcus right here. I had been thinking about that a lot lately and have wanted to do what's best for my family. It just kills me to not be able to go and be with my family but my husband and children have to come first - and they need me here. When our friend Zoe passed away, we wrote little messages for her and sent them on balloons up into the sky. Jessica knew that Zoe wouldn't really grab the balloons but it symbolized us sending our love and personal messages to her. It seemed to really help Jessica to have closure. Brandon and Austin participated in that activity with us and it helped us all. We will do our own thing here and either write our messages or verbalize our feelings and memories of Marcus right here at home.

If you need the contact information for Karen again here it is: Karen's blog: "I Made it Through Another Day" and http://www.carepage.com/MarcusRussell .

Thank you all so much! These are difficult times for my family but with so much support from so many loving people and our faith in God, we will make it.

Here is a song that I'm sure exemplifies what Karen and John (Marcus's parents) are feeling right now.

Prayers for Marcus

2008-10-20T14:18:00.001-07:00

My new friend, Melanie, has posted a prayer request and RAK (random acts of kindness) for my nephew Marcus. Melanie is an awesome artist who among other things, designs stamps and makes the most beautiful cards and alterables. I came across Melanie's blog while browsing different blogs looking at cards that talented ladies like Melanie make. It's been therapeutic for me to get my mind off Jessica's and Marcus's medical problems while enjoying the gorgeous handiwork of others. I started leaving message here and there and apparently one of the messages that I left on Melanie's blog sparked her interest. She came over to ~~the dark side~~... I mean to my blog and read all about Miss Jess and Marcus. Her heart went out to these two cousins and she wanted to do something special for them. We began emailing each other back and forth and I realized what a special person Melanie is. Apparently she has something up her sleeve about Miss Jess and I but right now I've asked her to concentrate solely on Marcus.

You see, Marcus is getting really bad very quickly. He is completely blind now and partially paralyzed. He is mentally and emotionally preparing himself for the afterlife. I am so proud of him! He listens to uplifting music and has his mom read to him about life after death from the best books. The whole family is preparing for him to leave. It's going to be hard for us all - especially for me and my family since we weren't able to travel to tell him good-bye nor will we be able to attend the funeral. Jessica's leg is starting to heal but she is still in so much pain every day and has to have the wound changes, and is so emotional... I just don't dare leave her. But Marcus knows how much we love him. We have always had a special connection. He "saved" me many years ago when he was an infant and Jessica was 3 yrs old, fighting for her life after a heart surgery went bad (hemorrhages, stroke, blindness, paralysis, blood infection). I would go to Karen's house and hold baby Marcus to me and rock him... I knew everything would be ok. Over the years he and Jessica seemed to have some connection and they have been best of friends. When Marcus was diagnosed with his brain tumor 2 years ago, Jessica talked to him on the phone and said, "If I can do this - then you can do it too!" Aunt Karen recently told Jessica that Marcus learned how to be strong from her. Jessica is so happy that she could help Marcus in some way.

Marcus may not last more than a few days... if even that. We are having to rely on our faith in God that we will be reunited again someday. Of course that day sure seems like a long time, but it will come. We are family and Marcus will watch over us from the "other side". Right now he is captive in his body as he prepares for his spirit to reunite with God and others who have gone before him. Preparations on the other side are being made to receive such a strong, wonderful young man. I am so proud to be able to call him my nephew. In a way I wish I could be there in that joyful reunion as he crosses through that veil and hears "well done".

If you have read this far and can see through your tears *wiping away my own*... Please visit Melanie's blog for her RAK and prayer request that she wrote. Hands, Head and Heart She posted a great picture of Marcus - one that he had professionally done just last month.

If you would like to send a card to Marcus and his parents, Karen & John, their address is:
Karen Russell or Marcus Russell
100 W. 500 S
Providence, UT 84332

You can also leave comments for the family and get updates at: http://www.carepage.com/ (set up an account and then click on "visit a carepage".... enter "marcusrussell" no spaces - and it will take you to it) Or go to Karen's blog: I Made it Through Another Day

I know that when we placed Jessica into hospice all the emails, cards, and messages of support meant the world to us. In fact, all your lovely comments are always welcome and heartwarming. Please show your love to my sis and her family.

Thanks you!

Jessica had surgery on her leg

2008-10-16T03:05:00.003-07:00

Jessica's hematoma has been continually getting worse so I took her to a doctor last week on Thursday. Actually, we weren't able to get in to see her primary card doctor so we saw a nurse practitioner. She numbed an area on the hematoma and took a sample. She wanted to make sure that Jess didn't have an infection. It seemed to be fine so she referred us to a surgeon. She said that they may want to make a small incision to drain the blood but a surgeon would have to do it.

I called the surgeon's office and they said, "You need to see our vascular surgeon" so we set up the appointment for Monday afternoon. The surgeon took a look at it and kept saying that she needed to have it drained. There was an area that had been a small scratch but Jess had kept picking at it and we were all concerned that it would become infected. Karl and I both felt that it needed to be done and when he said, "Let's do the surgery tomorrow afternoon", we decided that sooner was better than later. Jessica had been keeping me up all night every night since her appointment on Thursday because she was so afraid of what the surgeon might say! So let's just do it and get it over with. Karl called in sick so he could be there with me. Thank goodness! (Gosh I love that man!)

The surgery itself, which was Tues at 1:00pm, went well. We arrived at TMC at about 11:00am. We were so glad to have two very special visitors from our Tu Nidito group. First Amanda came bearing gifts! Jess got a gift card to Target. *woo-hoo!* She was a great distraction for Jess while I went over Jessica's medical history with the nurses. Just as Amanda was leaving, Susan came to stay with us for a while. She is also from Tu Nidito. We were so glad to have them there. Susan was able to stay with us until just after the surgeon came out to talk to us post surgery. She is so sweet to stay with us and just be there.

I spent quite a bit of time talking to the anesthesiologist about Jessica's unique cardiac anatomy. He thanked me several times for explaining it to him so clearly. He then asked me about Jessica's living will and if we wanted to waive it for this procedure. I told him no. He explained that the medication could possibly send her over the edge temporarily but could be reversed. I asked him if that involved compressions and intubation. When he said yes I shook my head and said no. You can't do that to her. So he then asked if he could talk to Jessica about it. I said sure but you have to understand that she is at about the level of a 3rd grader. So he started talking to her and I could tell that she didn't understand anything he was saying. When he was done I asked her if she wanted the tube in her throat. She adamantly said NO! "And if you do, you'll be in big trouble! And my daddy is a police officer" hehe... He then told Jess that there would be NO tube and Jess was satisfied. The doctor turned to me and I told him that I would be in big trouble if Jess were to wake up intubated "or brain dead" the doctor finished my sentence. I told him that Jessica's heart can't be repaired, her health is deteriorating and now she is experiencing bowel ischemia among other things.... there's no way she would want to survive another stroke or even wake up intubated. He seemed to really understand. Oh yeah, what was interesting is that when he was trying to talk to Jess, he started off by saying that it's very rare for him to work with people with the same type of heart problems as her because none have survived this long without being repaired. He knew she had pulmonary atresia but didn't know to what extent... when I told him that there was never a connection between her pulmonary artery and right ventricle of her heart and that there still isn't one, he was very surprised. She is my miracle for sure! I told Jessica that she is unique and special. That got me a smile.

We had to keep reminding everyone that Jessica needed a huge dose of antibiotics before the surgery and it was actually the anesthesiologist who ordered it and got it going. He was also the one to start the IV since everyone else apparently had other things to do. *gah!* I love that doctor because he took the time to talk to me about Jessica's unique cardiac anatomy and what her oxygen sats are. He really listened and cared. I don't remember his name but he is German. He had an accent but I could understand him just fine.

The surgery went well. The surgeon told us that he was able to extract a lot of blood from the hematoma. The problem is that the surgeon didn't mention to us that Jessica would have an open wound that would have to be cleaned and packed every day! He said one thing and then did another. He told us what kind of wound she had AFTER the surgery. Karl and I started asking him questions and he seemed flustered and said, "We went over this yesterday". Excuse me... we aren't stupid. We would know if he mentioned, "open wound" and he didn't say anything about it during our visit on Monday. Every time we tried to ask him questions he would say, "you are getting ahead of yourself" and kept saying, "She will be fine". So after the operation the surgeon said, "I'll have to check my schedule but I want you to come into my office on Thursday so that I can look at it and change it. I don't trust anyone but myself with this. Then we'll set up wound care" So we were sent home with the idea that his office was going to call us and set up an appointment for Thursday.

Meanwhile, Jessica has been having a lot of pain. We finally got her pain level down and she went to sleep at about 2:15am - and that's when I went to bed. At 4:00am she got up saying that her leg was really hurting and something about her bruise... I thought she had opened up the bandage and panicked. Karl and I both got up with her and the blood had soaked through the bandage. She was crying because she thought I had accused her of doing something she hadn't done. We got her settled down and Karl sent me back to bed. Karl was able to get a hold of the surgeon (at about 6:00am is when he called us back). The surgeon said, "bring her into my office so I can look at it and change the bandage. I will be there between 9 - noon." Jessica had finally gone back to sleep so Karl let her sleep (and slept a little himself) and then got her up and took her in at 10:00am. Nobody at the office knew Jessica was coming in and get this: the surgeon called in sick! What the....??? He had told Karl at 6:00am to go into the office and then turned around and called in sick - and didn't tell anyone that Jessica was coming in?!

The assistant changed the bandage and cleaned out the wound and then repacked it. By the way, after surgery, the doctor had said that the incision was only about "this" big - using his fingers to indicate about an inch long incision. Well, Karl says that the incision is about 3 inches long and that you can see all the way into the bone! Poor Jessica had no idea that it was open and she was shocked at seeing her own bone and tendons, etc. She said that is really stung when they cleaned it and it hurt really badly when they packed it. The assistant said, "I'm surprised that TMC didn't send you home with wound care. They usually do." Well, the doctor didn't set it up so how could the hospital do it? Also, the office said that the surgeon never comes into the office on Thursday and they didn't have an appointment set up to see him then either. They almost acted like we were crazy and didn't know what we were talking about. I'm just blown away at how nonchalant this doctor has been with us. Poor Jessica has been traumatized and keeps saying how her leg didn't hurt this bad before surgery. We are trying to keep her down and her leg up. She has soaked through her bandage twice already tonight. (Weds night) They gave Karl a package of gauze to put on top of their dressing so we have been doing that. We have been trying to get wound care set up through the nursing agency. If they don't have it set up then we'll have to take her back to the surgeon's office and have the assistant change it again. Jessica wants me to learn how to do it. I've always been so queasy about these kinds of things. I've had to take care of her wounds before but nothing like this. I've had to make myself NOT throw up or pass out while caring for her post heart surgery or cath and all the while praying that God gives me the stomach to do it. I have been so sleep deprived lately and emotional thinking about how Jessica got the hematoma in the first place, knowing that she doesn't have a very good quality of life in the first place and now for this to happen to her. I've been thinking about Marcus and how sick he is becoming and now I have to take care of this very nauseating wound... and hearing my daughter crying because she is in pain and has been traumatized.... I've been a wreck. Thank goodness Karl was able to take Jess in today and I was able to get some sleep. I'm feeling a bit better tonight and even dealt with her bandages.

If only we knew all the details we probably would have insisted on having a surgeon who goes to UMC and we could have prepared Jessica and ourselves for post-op care. We also would have had home wound care set up.

Tomorrow will be better. It just has to be. Good night.

Very important prayer request & more

2008-10-07T12:09:00.007-07:00

UPDATE:

Rene and Rob have still been trying to find jobs, are trying to sell all their belongings and are still trying to find a way to get back to KY to reunite with their other children and family. Rob has heart problems himself and is limited as to what he can do for work but he is not "sick enough" to get social security. They have disconnected their internet and other "luxuries" and access the internet at the library. I haven't ever seen a family try so hard to raise money - especially for the cause of reuniting their family. Rene had some rude comments on her blog as to why she is trying to raise the money and I am just angered at such insolence. All they had to do is go back and skim through her blog to see how hard they have fought to care for their family. Tommy was a very, very sick little guy and they took care of him so well! It's just a tragedy! I was able to get the code for a paypal button so those of you who are able, can just click on it and send money to this family. I know I will use it.

Thank you so much.

I didn't get a chance to post about the passing of a very special little boy, Tommy, on August 20th. When I found out that he passed away, I was in shock and then cried like my heart would break. We have far too many children dying from congenital heart defects. This was quite a surprise since Tommy seemed to be improving and doing quite well. I'm really sorry that I didn't get to honor Tommy at the time of his passing but I am trying to do that now. BUT.... the story doesn't end here though... not by far.

Sweet Tommy - June of 08

Tommy and his brothers

I just found out that his family is in dire straights. Tommy's dad lost his job 5 days before Tommy died. The bills and lack of job have left the family destitute. They need to be able to move from SC to KY where a job is waiting for Tommy's mommy, Rene, but they are unable to afford to rent a truck to move their belongings. They will be able to stay with family while in KY while they get back on their feet. It's such a sad situation - one that I've seen before. Not only does the family have to deal with the sudden death of their son but they can't afford all the bills - and to lose the only income is just beyond what I can imagine having to go through. Rene's blog is Musings of A Heart Family ... here she describes more of what is going on. She also has so many great pictures and video clips of Tommy and his brothers... you can't help but fall in love! I've been following Tommy's progress for quite some time and he was such a sweetheart! It just breaks my heart that he is gone and his family is going through so much. Please pray for them.

There is a memorial fund set up for Tommy's family and if you find it in your hearts to send even just a little, maybe Rene and her family will be able to get back to KY and try to pick up the pieces of their lives.

The info for the memorial fund is: Thomas Dereksen Memorial Fund, Account #2006015960, First Federal, PO Box 118068, Charleston, SC 29423-9910

One CHD organization has donated some funds, which is very appreciated, but more is needed. As of Oct 31 they will be homeless.

The Flood Gates Have Opened - Prayer Request

2008-10-03T02:34:00.004-07:00

I've been trying to be brave all week and it's finally all catching up to me. First it started with Jessica falling off the horse and getting kicked. Her leg is still very swollen, bruised and sore. She has not slept well since then and then the last two days/nights she hasn't slept for more than an hour or two at a time. She finally told me that she keeps reliving the accident again and again and again. Last night she dreamed that she was underneath Penny (the horse) and was getting kicked in the head, stomach, etc. She didn't tell me about the dream, she just wouldn't go to bed or when I would finally get here there, then she would get up. I finally was able to get to bed for the first time at 7:30 AM! Then she got me up at 10:30 and then went back down at around 11:30. I kept getting calls from the nursing agency... first they said our aid had called off because her daughter was sick. I told them that I desperately needed a nap so they tried to find someone. Jess had finally gone to bed at that time so I decided to wait a few minutes for them to call back. 20 minutes later they said they had someone and she was on her way to our house right then but could only stay until 3:00. That was ok - I just needed a couple of hours that I KNEW I could sleep. I stayed up to make sure that I could let her into the house so the door bell wouldn't wake Jessica up. 30 minutes later the nursing agency called back and said that the aid had locked her keys in her car and couldn't get them out so she wasn't coming after all. Nobody else that Jessica knows was available so I told them to not worry about it. As I was finally getting ready to go back to bed at 2:00PM and trying to figure out if I should wait for Brandon to get home from school (at 2:25 or so) Justen came home and then was about to leave again. I asked him if he could stay just long enough to let Brandon in so I could go to bed when JESSICA'S DOOR OPENED AND SHE WAS UP AGAIN!!!!!! I wanted to just sit down and cry right there. I got her all settled, lunch fixed, drink in hand and she was set up in the recliner in playing the Wii. I told her I definitely HAD TO SLEEP. I was able to get about 2 hours of sleep before being interrupted by an "urgent" phone call. I took the call, laying in bed, and afterwards just started sobbing. and sobbing.

I'm upset that Jessica is having such a hard time dealing with her accident. She is so traumatized by the accident but she is trying so hard to be brave. She started crying this evening shortly after I had my major cry (I cried alone. No reason to upset her any more than she already is.) So I teared up with her and let her cry. We talked it out. I told her it's OK for her to cry and be scared. She said that part of her wants to ride Penny again but another part of her doesn't. I told her that was perfectly normal and not to worry about it. She will not ride any horse until she is all better so she doesn't need to be fighting with herself in her head about it. Just relax and get better. Tonight she started picking at some scratches on her leg and I told her to stop. She has really been picking at her arms and face the last couple of months and there's no way she needed to mess with her hurt leg. She didn't listen to me and I fell apart. We both ended up crying and then settled down. I finally got her to bed and thankfully she stayed there. I guess it was a good thing that I gave her an extra anxiety medication and two oxycodone. She sure needed it.

Lastly, I have been very upset at her GI doctor. He NEVER CALLED ME BACK! After the CT scan - A MONTH AGO - his nurse called me and told me that there is some narrowing of the arteries that go to her gut - Ischemia of the bowels - and there's nothing they can do about it. Try to treat the symptoms. I posted about this here. Here's part of what I posted: "Do I offer her more morphine? What about the conversation I had with Dr. G about how much time we have? He offered to call Dr. V (Jessica's new pediatric cardiologist) and discuss it. I wanted to talk to him about whether it is time to put her back into hospice. "I'll remind Dr. G about your conversation and find out when he wants to see Jessica back in his office."

So neither the GI doctor nor nurse have called me back. We had an appointment with Jessica's peds cardiologist on Tuesday so I talked to him about it then. Dr. V went over the CT scan report and said that yes, there is some narrowing. No, the GI doctor never called him . I bet the nurse never gave him the message. What are we supposed to do now? Well, Dr. V. is going to contact the GI doctor for me and find out what the heck we are supposed to do. The GI doctor has Jess on 4 meds.... who is going to follow her for those? I have no clue when - or IF he even wants to see Jess again. (I feel like we have been pushed out of the igloo and onto the ice... out into the dark cold.) The PC also said that if we want to, we can talk to a vascular surgeon to see if they would want to try to open up Jessica's arteries that go to her gut. It would be similar to what they do with the pulmonary arteries - balloon or stents.... only Jess doesn't have access to the arteries through her groin nor her right arm due to cut-downs they had to do when she was so young. It's probably not something we would want to do anyway but the PC doc kinda talked me into at least just talking to them. If the vascular surgeon could even just look at Jessica's CT scan and see whether her arteries are even large enough to do anything with then we would know whether we even had that option and go from there. Karl has been working such crazy hours that I haven't even had a chance to talk to him about it much.

Also, Jessica's blood is getting really thick and when we see him in about 6 months we may have to do a treatment... they remove blood and replace it with albumin. She is at high risk for a stroke and they don't want it to get beyond a certain number. She is almost at that number. When the blood doesn't have enough oxygen it get thicker and thicker. We have to really watch it.

You see.... not only have I had a stressful week with Jessica but we found out on Tuesday that Marcus's chemo isn't working and he has less than a month left to live. He is already having difficulty swallowing and getting short of breath. I called Karen and talked to her. She seemed to be handling it quite well - at least right at that time. I know how these things go... you can feel strong one moment and falling apart the next.

It was just over 4 years ago that we had to place Jessica into a hospice program. Jess was coughing up blood and it was getting worse. The many tests showed that this was being caused by collaterals bursting and bleeding into the lungs. Any one of these events could be fatal. Some days it would happen up to 10 times a day! Other days she wouldn't have any. It was the most horrifying thing we have ever experienced and poor Jess would just wail because she was so scared - choking on the blood, gasping for air as she coughed up the blood. She was dying. She was too weak to get out of bed many days and on other days she would carry a bowl every where she went - just in case she had a lung bleed and could spit out the blood into that bowl. We didn't know at that time that hospice would help us so much that she would have to get kicked off their program after a year. They helped us start Jess on a morphine therapy that is preventing the lung bleeds! We didn't know that 4 years ago and we didn't know how much time we had left. Actually, we still don't know - of course none of us know that about ourselves - but Miss Jessica's body is still deteriorating and keeps having different difficulties because it's starving for oxygen and her heart can't keep up with the demands placed on it.

Sometimes I can't help but mourn what we have been through with Jessica and the life that she could never have. But today I also mourn Marcus's losses and the life he will never live. He is deteriorating fast. Tumors are in the brain stem now. His parents are contacting hospice for him. I grieve what they are going through and what they will go through. We don't know how bad things are going to get before Marcus goes "home". I HATE that my sister has to go through what I've gone through... and probably will go through again. I asked Karen whether she would rather have me fly out now or "after". She didn't know. I'm worried that if I wait until "after", Jessica will be so upset that I won't be able to leave her. Although by the way things are going with Jess this week, I can't leave her now either. My mom did remind me that if I wait and am able to go to the funeral, I'll see everyone.... many aunts, uncles, cousins, 2nd cousins, etc - some of which I haven't seen in 25 - 30 years. I haven't even had a chance to talk to Karl about this much either because he's been working so much this week.

We have a LOT of stress going on in our family right now. Please pray for strength for us all. Strength for my sister, her husband, her healthy sons and of course for Marcus. It has got to be hard on him to know that he is dying. Pray for strength for me and my family that we can all deal with all our stress a little better. Pray for SLEEP for Jessica and myself. Which reminds me: she is sleeping now so I had better get to bed and take advantage of it!

(Oh great - the dumb cat just threw up on the carpet. twice. LOL)

Oh well... worse things have happened - and will again! haha!

Pictures of Jessica on (and off) the horses

2008-10-02T03:43:00.011-07:00

Here are some pictures that I promised you and even a video clip of Jessica riding the horse.

Here is Copper saying "HI" to Jessica. Leisel is the girl holding Copper's reins.

Look at the procession! Leisel is getting ready to lead Copper, Sabin and his mom are on one side making sure that she doesn't fall, Brother Womack is on the other side and Daddy is pulling the oxygen tank.

Look at Miss Jess sitting on top of Copper as the sun is setting. She is really enjoying just sitting there for a few minutes.

Here she is in motion. On the video clip Jessica had just said, "My grandpa is a REAL cowboy" and then as I turned on the video camera you hear me say, "Yeah, my dad"... because my dad is who Jess was talking about. My dad had a cattle ranch for many years so he is a cowboy. ;) I had to suddenly stop the video because I realized I needed to jump over the oxygen tubing or I would get knocked down by it. LOL (Tavia is riding Penny in the background to your right)

Sabin is on the left while Sister Womack gives Jess a hug.

Daddy's turn for a hug!

Sabin is so cute. He has to get his hug.

Here is the troublemaker. Tavia. She is telling Jessica that she groomed Penny just for her. She got Penny all clean and ready for Jess to ride. I'm just kidding about Tavia being a troublemaker. We joke around all the time. Tavia is a lovely girl and we love her and her family to pieces. This photo was taking right before Jessica fell. This is the horse that got spooked and bucked Jess off. It's ok, we forgive you Penny. It wasn't your fault. It wasn't any body's fault. In fact, everyone rushed to Jessica to see if she was OK. Everyone was so attentive and apologetic. Karl and I feel bad that the Womacks feel responsible. It's just one of life's experiences and it was great to have friends who love and care about us so much. In fact, Sister Womack, Leisel and Sabin came to visit Jessica today. It was really nice.

After the fall and things got calmed down. I had two cameras around my neck when I reached out and pulled Jess off the horse and onto myself. Jessica has asked me several times if I took a video of her falling off the horse. uhmm... no. I was too busy catching you to take video, dear. LOL She's so funny. But look at how brave she is. She just took the fall of her life, not to mention a very scary on at that! And here she is smiling only about 20 minutes after it happened. (At least we fell on that "soft" dirt. We both would have been in a world of hurt had we fallen on concrete or an asphalt road!)

Is that a hoof-print that Karl is pointing at?

ahhhhh, a familiar site: paramedics attending to Jessica. Actually, the guy on the left was pretty cool. So was the one in the middle of the picture with his back 1/2 way turned. They didn't panic when we told them about Jessica's low sats. The dude taking her pulse was trying not to panic and insisted that her hands must be cold when her pulse-ox was at 82%. I said, "Jessica! 82%? That's pretty good! You ought to fall off a horse more often! " The paramedic on my left thought that was funny as Jess said her typical, "Oh mom." Karl was telling her that she was a real cowgirl now! You have to be bucked off a horse at least once to be a real cowgirl. ;)

The pros transpoting Jessica to our SUV. Jess did a really good job allowing them to move her. She insisted that she didn't want to be carried but she did what they told her to and they did great. As the one paramedic saw me taking these pictures he asked if they were for her "cowgirl scrapbook". I said, "you bet!" and handed him my business card. I'm just kidding! I didn't give him a card but I wonder how he knew about scrapbooks. Gee, do you think I missed out on a sale? (I sell Creative Memories scrapbooking supplies - doh!)

Not too happy waiting in the ER room. The pain is getting worse and we haven't been seen yet. At least she has an ice pack on.

We are finally eating something after the blood draw and x-ray. There is actually a picture of me! (not quite sure if that's such a good thing or not....)

Can you see Penny's autograph? Good thing she doesn't wear horseshoes or Jess most likely would have had a broken leg. I believe if she had been hit just one inch towards the center of her leg then it definitely would have been broken. We truly were blessed in so many ways.

Posing for the camera as we wait and wait for the results so we could go home. By that time the Oxycodone has taken effect and she was moving her leg, toes and foot around pretty well. We knew by that time that it was not broken but we needed to see if it even had a hairline fracture.

Yay! We are HOME and boy did Jessica miss her bunny, Mary! And of course her bed sure is more comfortable - and it has Barbies in it!

This is what her leg looked like on Monday, one day after the accident. Now it's a little less swollen but very dark purple and it's all around her leg. Very colorful! She is doing quite a bit better now but still needs more pain meds than usual. (she is up eating right now - 5:15 AM!)

While at the ER, the doctor (resident) came into the room and said, "so she has Tetrology of Fallot" and I said, "don't forget about the pulmonary atresia!" the doctor then went on to compare Jess with the girl who chewed the gum in "willy wonka and the chocolate factory" and turned such a lovely color of blue. LOL I'm so glad he didn't panic over her. Later, when he came in to discharge us he said, "other than the hoof-print on her leg, she looks pretty good". LOL! He was pretty funny and really nice. He said it was great that Jessica was riding horses and making the most of her life. We try. We get worn out and get scared to death but we try. I can't tell you how scared I was as I was trying to pull Jess off the horse and onto myself and saw Jessica's head going down as the horse's hoof was coming up. We landed on the ground and I was trying to get Jess off my left side and lean her against me while trying to get her face up so I could see if she was bleeding, conscious or even alive. THAT was such a scary moment! wow! I'm trying not to relive that because she is fine. *deep breath* she. is. fine.

for now...

Jessica was in the ER

2008-09-29T05:24:00.007-07:00

You'll never guess why! Go ahead.... guess! No, it wasn't arrhythmias, lung bleeds, asthma, stomach problems or any of her other million reasons she goes to the ER... no.... this one was special it was because...

She

got

bucked

off

a

HORSE!

My mom's comment... "what was she doing on a horse in the first place?" My answer was... "uh... trying to ride it!" doh!

Remember when I posted about our friends riding their horses to our house last year and Jessica got to ride Penny the horse and was sooooo excited about it? (Don't remember? I found the post HERE.) Well, we made arrangements with the Womack's (the family who own Penny) and we went to the stables. Jessica first rode on Copper, the Womack's other horse, and Jess did GREAT! She rode him around the arena a couple of times before she got off and then wanted to ride Penny. As we all were trying to hoist her up onto Penny, she got spooked and reared up and started to dart away. I almost lost my hold on Jess (she had already been jerked out of Karl's hold) and she started to come down. I grabbed her with all my might and pulled her onto myself and away from the horse. As all this was happening I saw Jessica's head go down and Penny's hoof go up. I was so scared that Jess got kicked in the face but thank goodness she didn't! She did, however, get kicked in the leg. We were both in a heap on the ground as everyone came rushing to our aid. I had to calm myself down because I was still looking to make sure she was breathing and wasn't bleeding! We ended up spending several hours in the ER waiting for x-ray reports and blood work but finally everything came back fine! Jess has a HUGE swollen hoof-print on her leg. Just an inch to the left and she surely would have broken her leg.

What a champ... Jessica still says that even though Penny bucked her off, she still loves her because it wasn't her fault. Jess still wants to try to ride Penny another time. The Womacks were so great... they helped us as much as they could and they kept apologizing. It's not their fault! We love and appreciate them so much. We are so blessed to have wonderful friends like that.

It's extremely late but I have some great photos of our adventure and even a couple of video clips of Jess riding Copper. She is soooooooo amazing! She is a true cowgirl because she has officially been initiated into the Cowgirl club! You have to be bucked off at least once to join that club. LOL

My birthday and a great story!

2008-09-27T12:41:00.004-07:00

First I want to thank everyone for all the birthday wishes. It really made my day! I had a lovely birthday. The night before my birthday a friend of mine and I went to a scrapbooking crop at our local scrapbooking store. We get to go to free crops during the month of our birthdays and our birthdays are 3 days apart. :D So we went and had our fun. The next day I had many emails and messages here on my blog wishing me a happy birthday! It was so fun! My sister's birthday is the day before mine and while I was out scrapbooking my sister and mom tried to call me. I told my sister several years ago that it's not fair that every year I call her on her birthday and then she doesn't need to call me the next day for mine. So this year she and my mom decided to call me on her birthday and surprise me! How fun is that? Since I wasn't home they talked to Jessica. She enjoyed talking to them. My mom has been helping my sis for about a month since Marcus's cancer came back and she will be going home next week. She will probably spend a day or two here in town so we'll probably get to spend some time together then.

Karl took me out to dinner on my birthday and that was really nice. The day after my birthday I got to go to church. It was so good to go again! It's been awhile since I've been able to go either because I didn't have anyone to take care of Jessica or I wasn't feeling well myself. I also got some phone calls and a couple of cards in the mail wishing me a Happy Birthday. Thanks everyone for making my birthday so great!

Here is a great story for you. If this doesn't make your day, nothing will.

There is a little boy named Derek Andrews who lives in Clarence NY...right outside Buffalo.
He is presently 7 years old and will turn 8 in October. Derek has a muscle disorder and doctors told his parents that Derek would never be able to run or play sports.
Apparently, however, no one ever told Derek.
He plays hockey at the Amherst Pepsi Center , baseball and soccer in Clarence, and participates in gymnastics. Maybe the word 'plays' is a bit misleading.. Derek was on the baseball league all-star team, the ice hockey select team and was the leading scorer on his soccer team! All despite that condition that continues to weaken the muscles in his body.
To make the story even more heartwarming, after winning a local bank's essay contest (who in the world writes essays at 7 ????), Derek used his prize money to put on a magic show at Children's Hospital, help organize a book drive for a Buffalo school and buy supplies for elephants at The Buffalo Zoo.
Derek's uncle says that Derek has been nominated for 'Sports Kid of the Year' by Sports Illustrated for Kids and is now a top 10 finalist. I can't think of any more deserving kid than this boy. To help Derek achieve that honor, all you have to do is vote for him at the following web site Sports Illustrated Kids

It literally takes 15 seconds to do. You are allowed to vote as often as you wish.

Happy International Talk Like A Pirate Day!!!

2008-09-19T05:30:00.003-07:00

Avast me hearties! Today be "International Talk Like A Pirate Day"! Shiver me timbers and blow the man down! Grab ye grog and play ye hornpipe ye landlubbers! Because you are a pirate!

Today also be me sister's birthday. Happy birthday Karen!

HoMeBoY invention

2008-09-17T15:40:00.003-07:00

My brother sent this to me in an email. It's hilarious! For those who don't see it, the sights are on the SIDE of the gun, gangsta style!

My New "FancyCrafty{Me}" blog!

2008-09-17T04:53:00.006-07:00

I just started a new blog all about my arts and crafts. I love to paint, scrapbook, make cards using stamps and other mediums among many other fun things. I just uploaded my first set of photos of things I've painted way back when.... over 10 years ago. When I say I painted things I meant I've painted on furniture, dolls, birdhouses, etc. In the next few days I hope to upload photos of baskets I was hired to paint. I got a bit burnt out on painting since my job took over my time after a couple of years. Then Jessica started to get sicker and I discovered scrapbooking... so the painting took a backseat and I delved into preserving our memories. I've made two scrapbooks of Jessica so far and am working on one for each of my sons.

My mom talked me into becoming a Creative Memories consultant about 6 years ago (so we could both enjoy the CMC discount - hehe) and I've really enjoy it. It gets me out of the house and I've been able to meet so many great friends. I still do workshops every month and on occasion I host "Get Togethers". My CM unit hosts some pretty awesome specialty events a few times a year. We have our "Croptoberfest" every October, National Scrapbook Day every Spring and the biggest and best of all is our yearly Retreat! A whole weekend of scrapbooking, winning prizes and having fun with friends. It is the only time all year that I get to go away (usually in town!) and not have the responsibility of my medically fragile child 24/7. I have pictures that I plan on posting later on of some of these awesome events.

I got into stamping a couple of years ago and am involved with a group of ladies where we exchange cards that we've made every month. This group is hosted by a "Stampin' Up" demonstrator and she shows us new techniques and ideas at these meetings. We exchange cards and we also order from the SU catalog. We each take turns being the Host so we can earn FREE stamps! ahhh... freeeeeeeeeeeeee crafting supplies! How could I say NO?

Crafting is my therapy. Seriously. If I go awhile without doing anything creative I get very depressed. Crafting and painting is good for the soul! In fact, I include ARTS and crafts because I am an artist! I've sold more items that I've painted than I've kept - and I've kept a LOT! You should see my house! So I think that I could be considered an artist. I like that term.

So hop on over to my FancyCrafty{Me} blog and check it out! Yes, I'm bragging here! And why not? I'm so thankful for the talents that God has blessed me with. Why not share it?

Good News and Bad

2008-09-08T08:30:00.003-07:00

The good news is that Jessica is doing a little bit better. She has been able to eat more and her pain has been a bit more manageable. I've had to give her more morphine but it's taking the edge off her pain. The problem with giving her too much morphine is that it could potentially cause her bowels to slow down even more. We sure don't want that! I have to be very careful not to over medicate her but try to keep the pain down so she can enjoy her life. I am getting frustrated because I have not heard back from the GI doctor. I left a message for her peds cardiologist on Friday but just missed him as he left for the weekend. I am expecting him to call me today. I've been up all night and am getting ready to go to sleep. Yes, it's almost 9:00AM! Austin is coughing like crazy and he couldn't sleep much last night. We don't have a home health aid today so I really hope I get some sleep today.

The bad news is that my nephew, Marcus, is doing worse. He had his 2nd dose of the new chemo last Wednesday and things went sour right off. Marcus started with diarrhea and vomiting right away. The poor guy was confused and sooooooo sick! They were able to give him meds to help stabilize him and then he slept. He was admitted to the hospital and has been there ever since. He isn't able to get his sodium levels up and he is at great risk for seizures. His eyesight is also getting worse and is wearing an eye patch. My sister, Karen, has been posting updates on Marcus's carepage. Karen's blog is: "I Made it Through Another Day"

Go on over and give them a little love. They sure could use it!

Two-fold downer

2008-08-30T20:23:00.005-07:00

Can I just post a bunch of cuss words and be done with it? I've been avoiding this post... but it's got to be done. It's a two-fold downer so continue reading at your own risk.

Jessica's ~~MRI~~ CT scan showed narrowing of main blood vessels leading off the aorta to her gut. It is Ischemic and there's nothing they can do about it. Try to treat the symptoms. Good-bye.

At least that's how the phone conversation I was having with the GI nurse was going. *ahem* Excuse me? Do I offer her more morphine? What about the conversation I had with Dr. G about how much time we have? He offered to call Dr. V (Jessica's new pediatric cardiologist) and discuss it. I wanted to talk to him about whether it is time to put her back into hospice. "I'll remind Dr. G about your conversation and find out when he wants to see Jessica back in his office."

Bugger. Not what I wanted to hear... but it was what I expected. So I told Jessica that I had good news and bad news: She asked, "How can it be BOTH?" LOL I guess she's never heard that expression before. I told her that the good news was that she didn't have cancer. She's been so worried about cancer... her cousin Marcus has it, our next-door neighbor has it (throughout her whole belly!) and another cousin was just treated for cervical cancer... so she has cancer in her life and was so scared that she was going to have it too. So *whew!* no cancer! Then I said that the bad news was that she isn't getting enough blood to her gut and she cut me off and asked, "Am I going to die?!" I took a deep breath and said, "Well, Jessica, it's like with your heart. There's nothing more that they can do to fix it but we can give you morphine and try to help you feel better." So then we talked about a few things that help her tummy feel better like eating popcicles, jello and other soft things. (Oh crud! That reminds me that I totally forgot to put Jello on my list so I didn't get it at the store! ugh!)

Jessica is now telling everyone that her CT scan was clear. haha... sure... it was clear (as in devoid) of cancer... and unfortunately it's clear (devoid) of blood too! But hey, if believing that her CT scan was clear and that's good news... then I'm not going to burst her bubble. If that's what she needs to tell herself to get through the day then woo-hoo! I'll celebrate the good news with her.

So I've been looking up Ischemia of the bowels and everything leads to the fact that if it's not fixed then she will develop a blockage. Typical symptoms are throwing up, lack of energy, extreme pain.... all the symptoms that she had 2 weeks ago. I HATE THIS! I don't want her to have to go through this! So anyway, I'm starting a list of questions that I have for the doctors... such as... what the heck do I do if when it happens again and doesn't resolve it's self? Should I have some anti-nausea drugs on hand or let her throw up until she's severely dehydrated? The poor kid can hardly eat anything and has lost 12 lbs in just the last few months. She will want something and I'll fix it for her only to have her take two bites and then say, "My tummy says no." Do I watch her slowly starve? She really shouldn't lose any more but at the rate she is eating (few bites here and there), she is bound to continue to lose weight. Last night I made tacos and she ate several of them! I was tempted to take a pictures of her actually eating! BUT... she's been up all night now and still has a tummy ache. I'm supposed to go to church later this afternoon but I just don't know if I'll be up to it now. It's been a long night.

OK, I told you that this post was two-fold:
Marcus is having more problems. He is dizzy all the time and his eyesight is blurry. He can't even watch tv or play his video games. He has to use a walker to get around the house and has to be in a wheelchair to go out anywhere. Just 3 weeks ago he was in band camp for the marching band and now he's in a wheelchair and can't see well. He is getting quite swollen from the steroids too. Marcus had a CT scan on Wednesday (the same day Jessica did). They were looking to see if he is developing fluid on his brain. Nope. The biggest tumor is in the back of his head and it is putting pressure on the area that controls the eyesight. He gets his 2nd dose of the new chemo on Wednesday. Let's pray that this chemo will shrink the tumors so he can at least spend some time doing things that he enjoys. He can't go to school so he is at home... staring at the ceiling most of the time. But... my mom flew to UT and is staying with them to help out. She said that she has spent some time with Marcus and that he does come out of his bedroom and spends time with the family. I talked to my sister last night and she said that he doesn't complain. He doesn't really say much but he doesn't complain. He has gone out with his mom and grandma to the grocery store and has been out to a couple of other places so at least he's willing to go out and do some things.

There's a lot to be learned from these two cousins, Marcus and Jessica. I'm so impressed with Marcus's courage and strength. I sure would be upset if I couldn't see and do any of the usual things I enjoyed doing. This should be Marcus's senior year at school. He was really looking forward to it but isn't complaining. Some people would be too shy to go out in a wheelchair, especially being very swollen up from the steroids - but not Marcus. He saw a few kids from school at the grocery store and talked to them. He is awesome. And Jessica... what can I say about her? She does complain - but she sure has a lot of reasons to! But she is determined to do the fun things she wants to do. She will be laying on my bed, telling me how much she hurts but will laugh when I tickle her feet. She will play the Wii and other games, watch her favorite tv shows and trace her pictures. She loves telling everyone about Pokemon and has a wall covered in pictures of Pokemon that she has traced, colored, cut out and taped onto the wall. (good thing it has wallpaper that we hate so we don't mind her ruining it. haha!) When I'm in pain all I want to do is go to bed and hide. Not Jess. She will still do what she loves to do and will try to be happy while she's at it.

I truly appreciate all the messages of support posted here, emails and phone calls that I receive of hope, comfort and support. There are so many times that I just think: I'm so tired. I've been doing this for 20 years. Jessica is really demanding more and more of my attention - even when she doesn't really need it. For example: I'm barely headed to bed at almost 8:00am because I've been up all night with her. But I realize that this is what God has called me to do and I will continue to do my best. I love Miss Jess and I love my sons too. I'm trying to show them in different ways how much I care about them. I'm so proud of my sons and hope for the best for them. There's so many things I wish I could do with them right now but I can't. I know there's a purpose for all this and only HE knows all the blessings that are in store. I just need to keep up the faith.

I almost left out Karl - my wonderful HH (handsome husband). Although he does find other funny things that HH can stand for: hefty husband, hungry husband, hunk-uv-a-husband LOL!