Forever Young

I first wrote this on 8-10-2015 but just realized that I never published it!  So here it is!  

 I'm preparing to record an episode of "Heart to Heart with Anna" with Anna Jaworski this afternoon.  The topic is near and dear to my heart, "Forever Young: Dealing with Cognitive Impairments and Congenital HeartDefects".  (Publish date: February 26,  2016)

As many of you know, Jessica was born with DiGeorge Syndrome which can cause CHD (congenital heart defects), learning disabilities and cognitive impairments.  Jessica also suffered 2 strokes, each of which caused some severe impairments including inability to learn speech, blindness, paralysis, etc.  We were very blessed that through a lot of hard work and prayers, Jessica regained most of the physical deficits that were lost but she never progressed cognitively beyond the age of a 7 - 8 year old leaving her "Forever Young". 

I had to be creative in teaching her how to do things because she didn't learn the way most children do.  After she had her strokes I had to re-teach her how to sit up, walk, talk and everything else she had learned up to that point.  It was devastating to see her struggling and she would get upset when she tried to do something, such as grabbing something with her left hand, that she knew she used to be able to do.  She would often get mad and throw her left arm aside as if to say, "This doesn't work anymore so get it out of my way!"  We would have to hold her right arm down and put a toy she wanted out to her left side so that she would have to use it.  We would have to tell her to use it and lift it up for her to encourage her to use it.  She would get tired easily because of her heart issues so we would have to do short segments throughout the day.  Since the physical therapist only came once/week or once every-other week, I would have to work with her numerous times a day.

Sometimes I would work on one word with her, showing her how to form the word with her mouth.  She would try and try again until she would get frustrated.  I worked with her when I fed her, when I bathed her, when we would do our other daily therapies and before I put her to bed.  Some days I would go to bed exhausted, wondering if it was worth it.  She would finally learn that word and she would be soooo excited!  We would say it over and over again but sometimes she would somehow lose it in her sleep and not be able to say it clearly the next day.  We would work again until she got it back.  This was my life for years.  I knew that if I didn't give my all to teach her, nobody would and she wouldn't be able to communicate.  She craved communicating with others and I knew that Heavenly Father was counting on ME to teach His child. 

Jessica was a loving, innocent, thoughtful, imaginative little girl who lit up any room she entered.  She took pleasure in the little things in life and enjoyed spending time with others.  I'm so very grateful that she was blessed to have regained most of what was lost with those strokes.  Her life was difficult enough already and the strokes were devastating.  Watching her work so hard, gave me the strength I needed to work hard as well.  I rejoiced with each little bit of progress she made.  She really taught ME how to be tenacious and to push forward.  I'm grateful for everything she taught me and for each moment we had together... and she's with me still!

Silly Socks & Jess

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

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

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

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

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

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

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

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

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

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

  

The Story of Christmas & Silly Socks 

Wearing Christmas socks:  L-R

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

To read more about Jessica's CHDs (Congenital Heart Defects) click here and here. To learn more about Jessica's 5 heart surgeries please click here.  

Thank you for stopping by!  

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

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

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

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

Because of Him

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

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

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

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

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

Update on Jess Sep 13 & 14

Yesterday's post:

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

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

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

Thank you all for your love and support.

Today's post:

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

She's my hero.

Facebook Updates on Jessica from September 9 - 13

9-9-10

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

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

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

(later that night)

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

9-10-10

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

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

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

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

9-11-10

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

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

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

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

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

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

9-12-10

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

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

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

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

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

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

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

Happy Easter - my thoughts today

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.

Typo???

I just got a note from the new Peds Cardiologist. I'm going to have to get used to the way he does things I guess. Dr. D would call usually call me and give me the results from tests... although there were a lot of times that I would call him first. LOL I should call Dr. V because in his notes he said that Jessica's holter showed 1100 PVCs. What? Is that a TYPO or is this medication really helping???

Jessica has had multiple holter monitors since August of last year and most of them showed between 8,800 - over 10,000 PVCs. This one said 1,000! WOO-HOO!!!! I'm so happy that this medication is helping her and it doesn't seem to be aggravating her asthma. We are soooooo blessed!

Lately I've had many opportunities to talk to Jessica about having faith. It's nothing less than a miracle that she survived her 2nd heart surgery... a Cardio-thoracic surgeon stood there, looking at me in the eye and said so. It's nothing less than a miracle that she got her eyesight back after the stroke she had during that surgery. Many times she has cheated death including 4 years ago when she was having so many lung bleeds that she would carry a bowl around because she would cough up blood at any time. We prayed for answers and ours came in a little bottle of blue liquid. Morphine. It was a long shot but we tried it and it worked. Hospice was very helpful in the process of finding our miracle and it was very hard when they left us. But Miss Jess is only rarely - I mean, EXTREMELY rarely coughing up blood anymore. Jess said, "But now my heart is having 10,000 PVCs... and I told her to have faith that we would find another miracle to help her with that. I was soooooo excited when I got the paper in the mail and told her about it. I tried to tell her that 1,000 PVCs was 10 times better than 10,000. Blank stare. Being a 7 yr old in a 20 yr old body is a little hard... so trying to grasp the difference between 10,000 and 1,000 was kind of hard for her. So our conversation went something like this:

J: "Is 1,000 better than 10,000?"

Me: "Oh yes! MUCH better!"

J: "Is 1,000 better than 9,000?"

Me: "Yes!"

J: "Is it better than 8,000?"

Me: "Yes! And it is better than 7,000 and better than 6,000, and better than 5,000, and better than 4,000 and better than 3,000 and even better than 2,000!"

J: smiling from ear to ear: "Wow, that is good!"

Jess is scared of dying and also feeling very sorry for herself that she isn't like everyone else. She REALLY wants to have a boyfriend and get married. She wants someone to love her and take care of her. I've tried several different approaches with her since she has set in her mind that since she is 20 then she is old enough to have a boyfriend - so where is he? LOL So the last week or so every time she brings it up I remind her of all the miracles on her life. I ask her if she has faith. Does she really believe that Heavenly Father and Jesus really want her to be happy? She says Yes! Then she needs to have faith that they are watching over her and are going to make sure that she is happy.... but she needs to try to be happy NOW... and not waste her life away wishing for something. She needs to have faith while she waits and God will take care of the rest. (As I've mentioned here before that in our religion we believe that we will all be resurrected - but not reincarnated.) I'm positive that those who don't have a chance to marry and have children in this life will have that opportunity in the next - after being resurrected. Wouldn't that be wonderful for her to have a body that is perfect? One that can walk across the room without getting winded? One that won't need oxygen or a wheelchair? One that will be able to do anything she wants it to? So she needs to learn to have faith and patience. Oh my... that is a hard one! I've been telling God that I've learned patience, it's time to move on! hehe... I'm joking of course but I tell ya, some days I really feel like it. I've been taking care of Miss Jess - who has been very ill her whole life - for 20 years. I'm tired. BUT I wouldn't trade her for anything. I don't want her to leave ... but she does deal with a lot of pain. Every single day. That's hard.

We are so blessed though. We have so many people who love us and support us. I had better get to bed since I'm taking Miss Jess to have lunch at her fav restaurant: IHOP. Our SUV is out of the shop and so I can take her/ the wheelchair/ and oxygen to have a nice lunch with one of our friends from "Tu Nidito". FUN! I hope it's not too hot - nor rainy... the wheelchair lift if on the outside of the SUV and we don't want her motorized wheelchair in the rain!

Anyway, I want to keep up with my blog more often and not leave you all in the dark - so turn on a light already! ;)

Coming up in the next week: Brandon's birthday on Saturday, Sunday is always busy with church stuff (usually Karl and the boys go but I may get a chance to go too - IF I get some sleep before then), Monday is Brandon's actual birthday - 15 yrs old!!! (*yikes!), Tues is a court of honor - both Brandon and Austin have 5 merit badges that they worked on at scout camp and Brandon is advancing in rank!, and Wednesday Brandon has to have ORAL SURGERY! None of us are looking forward to that day. Poor Brandon - please keep him in your prayers.

URGENT PRAYER REQUEST

I am sending out an urgent prayer request little Paige. Paige has been in the hospital with one complication after another since her heart surgery in September! She was transfered to a hospital several hours further away from home in order to get the care she needed. It's been a terrible strain on her family. I have asked for prayers for her in the past and now I ask that you spread the word about Paige as she is in desperate need of prayers right now. As I have mentioned in past posts, I met Jenn in KS a few years ago when we attended a CHD quilt show. Jenn is one of the sweetest people I've ever met.

Her mom writes:

To day is a bad bad bad day, she is unresponsive and sleepy...
Her heart rate and sats are good but the PLE is taking a toll on her body and they can't control it.. Please pray, chant, dance or do whatever it is you do... We need them... I have called all family to be here.

Things sound really bad - just when it seemed that Paige was making some improvements. Here are the photos that I have of Paige and her family - they were at an uncle's wedding shortly before her surgery in September of 2007.





Jenn was recently able to set up a carepage so she could update everyone on Paige's progress. To go there and offer support, go to Carepage home sign in or register (it's free), click on "visit" and then type in PaigeMarieBennett (no spaces). Please leave messages of support for them. They have been through so much and it breaks my heart to think of what may happen in the next 24 hours or so.

Thank you.

UPDATE 1/20/08
Paige is improving slightly every day. She is still a very, very sick little girl but she is making some progress. Jenn, Paige's mom, gives daily updates at the carepages website. The information on how to get there is above. Please go there and offer your support.

Thanks again!

"You're Wiser Than You Think"

My Mom emailed this video to me and I just had to share it here. It is short but worth every second of it! Enjoy:



Here is more information about the video:

(A FrankLozano.com Production) Little did I know when I was given the audio to this phone call that it would become SO HUGE. When I produced this video, I knew it was special to ME, but never would I have guessed when typing the text and editing the music that it would literally touch MILLIONS. I am proud to have put this video together for the world to see and hear. We have had a lot of requests to replay the phone call that Pastor Mike shared during our church service on Sunday, Nov. 11th, 2007.

Here you'll find the video clip that I created just for you. After our church service I placed the video on YouTube so that you can watch it and share with family and friends.

Logan is a 13 year-old boy who lives on a ranch in a very small town in Nebraska. Logan listens to Christian Radio station 89.3FM KSBJ which broadcasts from Houston, TX. Logan called the radio station distraught because he had to take down a calf . His words have wisdom beyond his years.

Since airing the audio of the phone call and now the making of the video clip, it has taken on a life of its own. People are forwarding it all over the world. We encourage you to share the love of Christ with anyone you can.

(**Sky Angel is a family safe broadcasting service that is offered on satellite. KSBJ is a local Houston Christian music radio station. Video clip produced with love by me, www.FrankLozano.com Hear the entire message at www.ValenciaHills.com)

Miss Jess..... and worries about death

This is not the easiest of subjects. I know that many of you may not be up to reading this post and that's ok.... but I do want to warn you that there are some good things in here as well as the difficult stuff, so if you skip it, you might miss out.

I don't write about a lot of the conversations that Jess and I have or some of the stuff that we deal with ... but then I got to thinking that maybe I should. Jess talks to me but who do I talk to? I talk to Karl about it sometimes but he gets emotional... afterall, it's his little girl too. So I thought I would bring it here. I have had to learn to be calm when we talk about these things. I don't mean that I am cold... I am very compassionate but I don't fall apart. I have wiped away tears and let Jess see that sometimes, but on occasion I fall apart later, either when I'm by myself or with Karl.... but usually after it's been building up for awhile.

Miss Jess has been having some rough nights. She has been emotional and having anxiety. Weird thing is that she shouldn't be PMSing so I can't blame it on that. She has been fixated on death though. She has been causally talking about what happens to a body after it's been dead for awhile. We talk briefly about that and then I will quickly bring up our beliefs about what happens to our spirit once we die. I talk about how beautiful heaven must be and how we won't have any pain. We talk about who we know who has died and that we will be able to see them again. We discuss about some of the kids that she has known who have died from either CHD or other illnesses. We talk about how they must be running and jumping, swinging and dancing as much as they want - things they couldn't do when they were sick and sometimes never had a chance to do here on earth. Sometimes she will even talk about famous people we would want to meet.... Jessica mostly brings up people like Moses or Noah. On occasion she will learn about a former president of the US or a queen of England from a long time ago and she will brighten up and say, "Hey! I can meet them when I go to heaven!" LOL. She LOVES the thought of meeting royalty. After all, she is at the level of a 6 - 8 yr old and what little girl doesn't want to meet - or even BE - a princess?!

Well, tonight she seemed to be doing ok but got up a few times. With her anxiety she picks... she picks her skin on her arms, face and her toenails. (she has many scars on her arms and face from picking sores) Our biggest concern is infection. She has no idea how easily and infection could go to her heart and she could get bacterial endocarditis. So I caught her picking her toenail and making it bleed (she could cause and ingrown toenail!). I was not happy and I scolded her. (I have to treat her with kid gloves most of the time.) I had had it. The last 3 nights in a row she had kept me up until after 3:30 am and I have someplace I need to go tomorrow. I'm tired of having to take naps during the day because I don't get much sleep at night and the last few posts here have been regarding my health... obviously I don't feel well as it is. Well... my scolding set her into tears. Big 'ol alligator tears. I had been chatting online with my sister and had to go care for her. *sigh* (this is the sister who's son has cancer and I haven't had a chance to talk to her lately)

Jess was crying and saying how sorry she was that she had picked her toes and she hoped I would forgive her. I apologized for snapping at her and I asked her if she would forgive me. She nodded her head yes. I told her that of course I forgive her. Then she started crying again and asked if Heavenly Father would forgive her too? I said of course He will. She started talking about how she just wanted to give Heavenly Father and Jesus big hugs and how she wished that they could come so that she could hug them. She also wanted to tell them that she was sorry... so we decided that she should pray to ask for forgiveness. She started out by asking for forgiveness and telling Heavenly Father that she loved him. She then asked Him to forgive everyone, even if they didn't say they were sorry, but to please forgive them anyway. She is crying through her whole prayer and I was watching her... (I know, shame on me for not closing my eyes) I just looked at her profile, tears coming from her closed eyes, arms folded, purple lips and nose as she lay in bed pleading to her Father in Heaven to forgive her. I saw such an innocent, beautiful, angelic child who wanted to be perfect in every way. She went on to bless her cousin Marcus and our next-door neighbor, Donna, that they would be able to fight their cancers and to please not let them die too soon. "I will really miss them and I love them", she pleaded. She must have told Heavenly Father at least 5 or 6 times in her prayer that she loved him and Jesus too.

After her prayer was over I told her that Aunt Karen said that Marcus was doing pretty well. Jess said that she wished that Marcus's cancer was gone! I agreed with her. Then she said that she hated that Donna's cancer was back. "What if she dies?" I told her that we would miss her but we will always love her. The tears started back up and she said that Donna is the best neighbor friend that she has ever had! I agreed but told her that even once somebody dies, our love for them doesn't stop and we carry their memories with us always. We started talking about my grandpa H who's chair is in Jessica's room. She says that she likes sitting in it because she can feel his spirit holding her. My grandpa died before Jess was born but she has seen pictures of him and we talk about him and my grandma. So we started talking about great-grandpa and great-grandma... I told her some great stories about them and then we talked about my other grandma T (who is still alive) and her brother (who died just a couple of years ago). We have video of when Jess was about 3 yrs old and we got to visit with my grandma T and Uncle Melvin and Aunt Ada. I told her stories of how Uncle Melvin would tease my grandma T. He always called her "sis". Jessica started to laugh at some of the stories. I told her some stories of times I spent with my grandma and grandpa H. Then we talked a bit about an adventure we are going to have on Tuesday. We have to have some electrical work done at our house in order to continue the work on enclosing the carport so the power will be shut off most of the day on Tuesday. The boys will start school that day so I will take Jess out to grandma and grandpa Jensen's house for the day. I told her that I have wonderful memories of spending time with my grandparents and now it's her turn to make her memories with her grandparents. She smiled and liked that idea. She was FINALLY calm. She said that maybe she just needed to get all that out. I think I have to agree. I guess she has been so worried about herself dying, her cousin dying and even our next-door neighbor (who's chances of surviving 2 more years are only 30% - but Jess doesn't know that)... Jess just needed to get all that anxiety out.

In fact, a few days ago, she has asked me several times if someone can die from ulcers. She knows that she has ulcers and that's why she has to take the carafate. I told her that no, people don't die from ulcers. She then asked me if people can die from coughing up blood. Now Jessica hasn't coughed up blood for a couple of months but sometimes she can feel and taste blood in her throat, so I'm sure she is scared. I said that it would have to be a LOT of blood for someone to die. She asked, "like a cup?" NO, more than that. Like a bowl? No, more than that. I put my arms out really wide and said, "at least THIS much blood". "Like a RIVER?" I smiled. Yes, like a river. She knows she has never coughed up THAT much blood... not like a river, so she seemed to be ok with that. At least for a couple of days.

So here I am, typing at almost 3:00am about my daughter who is such a little girl in so many ways... who at her age should be dating, going to college and planning her future... but instead is playing with barbies, dreaming of princes and princesses, and worried about dying. I wish I could take that last part away from her. I wish I could take it away from all children who have life-threatening illnesses. I wish us parents didn't have to worry and watch our children worry.... and miss out on many of the "normal" things in life, not to mention the medical stuff they go through.

But on the other hand.... the faith my daughter has is amazing. She was truly sent to me to teach me and inspire me. I have never prayed harder than when she was hurting or near death. I have seen miracles. Another thing that Jessica brought up as she was having her anxiety, was that there are so many bad things out there. I told her that they would not come in here (meaning our home). I asked her who it was that made her live when she almost died when she was three? "Father". Who was it who gave you your eyesight back when you were blind? "Father." Who gave you back your strength and helped you learn to walk and everything again when you were paralyzed? "Father" Now don't you think that your Father in Heaven can bless you and protect you now? She nodded. "Of course He can. We just need to have faith and not worry about all that bad stuff." I reminded her that Mommy and Daddy do everything possible to protect our children. I reminded her that Heavenly Father blessed her with parents who love her more than life itself. He blessed her with brothers and grandparents and aunts and uncles and cousins who love her too. He also blessed her that people all around the world know about her and pray for her all the time.

We are truly blessed. Even at 3:20 am and are not sure if we will ever get to sleep tonight. Jess just got up AGAIN. She was looking for her CD player. *sigh*

Is there an anesthesiologist in the house?

Anybody?

Anybody?

Please?

Happy Independence Day

I am proud to be an American and am thankful for those who fought and continue to fight for our freedom. Today I am most thankful for the freedom for my family and I to worship as we please. My sons are involved with the Boy Scouts of America through our church and today in honor of independence day our church had a flag raising ceremony. My son, Brandon, was part of the color guard. Karl asked his srg if he could go in to work late so that he could be there to see Brandon in this ceremony and the srg gave him permission to not only go to the ceremony in class A uniform, but he was able and participate in the ceremony too. Here are the pictures:

Brandon carrying the flag. Josh and officer Karl in the background.
Karl called out the commands.



Brandon and the other scouts preparing to raise the flag.



Raising the flag.



Officer Karl calling out the last commands.



The scouts dismiss.


Happy Independence Day

FIVE

Jessica has had FIVE heart surgeries.

This is a picture of Miss Jess when she was three years old post-surgery.
This was the hardest recovery of all.

First, a little background information about Miss Jess.
Jessica was diagnosed with pulmonary atresia/VSD when she was two weeks old. We were told that she had very narrow pulmonary arteries and that the heart was not directly connected to her lungs. Blood flows through a large hole between her two lower heart chambers, mixing both the oxygenated blood and the unoxygenated blood. Then the blood flows up the aorta to the body. Jessica grew some collaterals from the aorta out to the lungs and that's how she was getting blood from her heart to her lungs. Jessica was very ill and fragile so the doctors wanted her to take the heart meds to stabilize her and get her to put on a little bit of weight.

Jessica had surgery number ONE when she was five months old. The surgeon put in a shunt between her pulmonary artery and her aorta - forcing blood through the pulmonary artery in hopes that it would make the artery grow. A blood clot formed and went to her brain and Jessica suffered a stroke which weakened the right side of her body and affected her speech. She has to learn sign language in order to facilitate speech. She was very slow growing and we rejoiced at ever ounce she gained! She was delayed and didn't sit up until she was almost a year old and didn't walk until she was 2. She had OT, PT and Speech weekly for months! Pretty soon it was time for another surgery.

Jess was back in surgery just a month after her 3rd birthday.
During surgery number TWO the doctors accidentally cut the shunt and Jessica hemorrhaged out. She went 8 minutes without getting blood to her lungs and in turn no oxygen to the brain. Once she was on bypass the doctors were able to replace the shunt with a larger one... tucking it out of the way. The first shunt had been pushed into the sternum by Jessica's enlarged heart and that's how it ended up in the way and was cut. Jessica remained in the OR for hours bleeding out of control. Finally at 1:00 am we were told that she was stable enough to bring up to the ICU but she was in critical condition. She remained in the ICU for a couple of weeks experiencing more bleeding, seizures and a life-threatening blood infection. Several times she was not expected to make it. Once she was off the ventilator and was able to wake up we realized that her left side (previously her strong side) was paralyzed and she was blind. The CT scan showed 4 areas of her brain had been affected. Over a short period of time Jess regained enough vision to recognize us and was no longer terrified as she had been for several days (during which time we prayed and prayed... prayed that we would accept HIS will and that she would be comforted. HE gave her the eyesight. What a gift!) During this time is when the picture (above) was taken. It is one of two pictures that were ever taken of Jessica in ICU. I just couldn't bear to photograph her with all the tubes and wires, etc. I know that I will never forget and I didn't want pictures to remind me of how hard it was and how much she went through. Jessica had to relearn how to crawl, sit up, walk and all the other things we had struggled so hard to learn the first time. She had OT, PT and Speech again. She was very determined and regained almost all that was lost.

Surgery number THREE took place when Jessica was 5yrs old. The surgeons did what was a new surgery at the time called unifocalization of the collaterals on her right lung. Jessica suffered a pneumothorax post surgery but that resolved by it's self. Brandon was just 2 months old at that time! Thank goodness Jess did not suffer another stroke or hemorrhage.

Surgery number FOUR took place just 7 months later. The surgeons did the unifocaliazation of the collaterals on her left lung and they placed a conduit inbetween her right ventricle and pulmonary artery. The thought was that it would establish continuity between the heart and lungs and they would also be able to do a cath to measure the pressures in the pulmonary artery. Again Jess suffered a few complications but nothing as major as the prior strokes. Unfortunately this was when the surgeon came out and told us that looking at the pulmonary artery he could see that it has not grown. He felt she would never be able to have complete repair and went on to mumble something about most kids living off shunts like she has don't live past their mid-teens.... they either can't fight off an infection or they get too "blue" to survive. (meaning that's how they usually die.) He also mentioned that most kids haven't been through the strokes and hemorrhaging difficulties like her and how sorry he was that they couldn't do more. He mentioned transplant but said that Jessica would need both heart and lung transplant and with the severe difficulties she's had (strokes and bleeding), he felt that she wouldn't make it off the operating table - she would have lesions everywhere. We went home to cry. Cry and pray. Jessica came home about 8 days later. I cornered one of the pediatric cardiologists and asked him exactly how much time he thought we had left with Jessica. He had been avoiding this question and finally he looked me in the eye and said, "We never expected her to last this long, Mrs. Jensen." Since we almost lost Jess several times when she was 3 years old we were already feeling like we were living on borrowed time. So we called Make A Wish and she wanted a computer. We did some things as a family that we wanted to do. We were done. We were done with surgeries and done having children. I had been put on bed rest with my pregnancy with Brandon and I just couldn't take care of a dying child and be on bed rest again.... so we thought!

Surgery number FIVE took place almost a year after the fourth one. Jessica wasn't doing very well after the fourth surgery and I kept trying to tell the doctors that something was wrong. She seemed more "blue" and tired more easily. She was needing oxygen more often. Finally they decided to do a cath and find out what was going on. During the cath they found that the conduit that they had put in was causing more blood to back up into her right ventricle and she was in congestive heart failure big time! They had to either a) go in and close off the conduit or b) give comfort care - she was dying. The doctors left it up to Karl and myself. They were worried to subject her to another surgery and potentially causing another stroke or other complications. So we prayed again. We decided to do surgery ONLY if they promised not to open mid-line. She had been opened there 3 times already (the other surgery was under her right arm and around her back). She always had complications and it took months for her to get back to feeling ok post surgery. They agreed. She went in for her fifth surgery and they were able to go through two ribs to close off the conduit. Oh, did I mention I was 6 months pregnant with Austin when she had her last surgery? I don't think I will ever tell God what I can and can't go through again. ha! It was really something... but we did it and our sweet girl came home 5 days after surgery!

Now Jessica is about to turn 19 YEARS OLD!

What a miracle! We are so blessed.

For those who have asked, Jessica is still considered terminally ill. Her body is deteriorating and new problems are arising from the fact that her body is not able to get very much blood to her lungs, therefore not getting enough oxygen to her body. She is suffering from hypoxia. She is experiencing digestive problems, acid reflux, headaches, body aches, fatigue, depression, irritability, a lot of anxiety as well as other problems due to her body never having enough oxygen in the blood. Some things that I didn't mention here is that she is prone to developing blood clots but we can't put her on blood thinners because she also experiences hemoptysis (coughing up blood) due to the collaterals bursting and bleeding into the lungs. Fortunately the morphine therapy is keeping the hemoptysis under control. Jessica doesn't get out much but that doesn't stop her from enjoying her life as much as possible. She is at about the level of an 7 or 8 year old. She loves to color, trace pictures in coloring books, bead necklaces and bracelets, and play video games. She is a joy to everyone who meets her. She is so innocent and loves everyone. She is especially interested in animals (she has her own pet bunny - a netherland dwarf), she loves Disney Princesses, Lord of the Rings, Pirates of the Caribbean and Harry Potter. In fact, Jessica has written a book about a new character that she invented for Harry Potter... his long-lost twin sister, Mary. Of course a lot of the book rambles on and most of the spelling is wrong. On occasion you will see punctuation and random capitalizations but she wrote the book all by herself! And she kept up with it for 4 years until it was done. There are little drawings in there too. It is a book I will cherish forever. Jessica continues to amaze everyone. We don't know how much time we have left but we try to cherish each day. Each hug. Each smile. I try not to take anything for granted. Each day is a gift.

Hoppy Easter!

I saw an Easter card several years ago with a cute little bunny hopping around, delivering easter eggs with the saying, "Hoppy Easter" and I've liked saying it ever since. Our family celebrates Easter with a little bit of the Easter Bunny, hunting eggs and eating candy, but we also focus on the spiritual aspect and how Jesus Christ suffered for our sins in the Garden of Gethsemane, He not only died but was resurrected so that we might live again. I'm so very thankful for these gifts. I know that life goes on even after death and that through Him we can live together as families and friends forever.

Miss Jessica said to me today, "Mom, I'm glad I'm still alive so that I can celebrate Easter with you today."

Me: "Me too.

Jess: "When I'm in heaven, will you still celebrate Easter?"

Me: "You bet we will and we will think of you! We will think about you every single day."

Jess smiles.