An Amazing Poem by an Amazing CHD "Child"

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:

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

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!

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

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

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!

ps

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?

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

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

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....

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

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!

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....

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

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

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....

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.

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

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

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

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!