The Feinauer Five

Our Heterotaxy Poster-Boy of Hope

2009-04-09T16:04:00.011-06:00

Dear Jacob,

This past month has been one of the most memorable on our CHD journey together. We have experienced the highest highs and the most devastating lows, and so I dedicate this blog entry to you, so you will always have record of this important moment.

Jacob, we have been so blessed. We had your one year post surgical follow-up appointment this week in the cardiology clinic. It has been just over a year since your Fontan surgery, and you are doing amazingly well. You have great heart function, saturations in the high 80's (88, I think), and good pressures. Your cardiologist called you, "The poster-boy of hope for Heterotaxy kids." He said that he tries to explain to newly diagnosed families that there are cases that do really well, and you are at the top of the list. We are humbled by this, and know that it is your fighting spirit along with the plan Heavenly Father has for you that has brought us to this point. Our hearts are filled with joy. We know that our challenges are not behind us, but we will take this fight on one day at a time, together. And for now, we celebrate the good news!

Jacob, you have been lifted up by the knowledge of others. It is a huge blessing that you are surrounded by the most amazing medical team. This team of doctors has been led by your heart surgeon, Dr. John Hawkins. Please don't forget the miracle this man has played in your life. Know that he was a dear and trusted family friend before he was ever your heart surgeon, and the fact that he was able to perform your surgeries and save your life was a HUGE miracle to us since we had absolute trust and faith in him as a person and as a surgeon. He came to your parents wedding, and showed great love and respect for you when he heard of your impending birth. You also have other doctors who have been part of your miracle, Dr. Jesse Fox another dear and trusted family friend and your pediatrician. He has spent countless hours making sure we have done everything we can possibly do to keep you healthy. Dr. Michael Puchalski who diagnosed your heart condition before you were born and always had hope and faith that you would be able to have a high quality of life. He has continued to be your cardiologist throughout your life and loves to share stories of his adventures with you on your appointments (remember the pictures he emailed you of him swimming with sharks?). And finally, Dr. Ron Day the cardiologist who performed the life-saving cath-procedure that brought you back to us after your Glen surgery. Every time you have been at the hospital Dr. Day ALWAYS makes sure to check on you, and we feel very blessed to know that another set of eyes is watching over you. Each of these men have contributed to your continued good health, and I believe, truly care about you.

Jacob, we have all been inspired by the music and courageous fight Paul Cardall has endured to receive his heart transplant. Your parents attended a benefit concert this week to honor Paul and help pay his medical bills, and I want you know what an amazing event it was for us. He has currently been on the transplant list for 231 days, he is married and has a three year old daughter Eden. Always know that there are others out there fighting too, and it only takes the desire to look for you to find inspiration. In times of struggle, seek out individuals like Paul Cardall to keep your spirits lifted. He is so optimistic and has an sincere love for life, not unlike your own. You can learn so much from what other's have endured. It was almost a sacred experience to be in that auditorium, surrounded by other heart families, all sharing in the most uplifting music knowing we had all been touched in some way by CHD. He dedicated a song to your heart baby, Gracie Gledhill, you would have loved to see her slideshow. Even in his own time of struggle, he is thinking of others. Always strive to think of others no matter how low you feel.

Jacob, I love that we have joined to help other families with CHD through Intermountain Healing Hearts (IHH). I love that you feel like each new baby born in our group is your special heart baby. It fills my heart with true joy to listen to you each night pray for these babies by name. You are a sweet and caring little boy. I know you don't understand when we lose some of these little friends and they return to Heaven. You are so tender to continue to pray for them and wonder if they are okay without their parents. I know the passing of sweet babies, Gracie Gledhill and Mercydez Haws this past month, was particularly hard on you since you had prayed for them and looked at their pictures on their blogs for almost a year. I know that we will always remember the inspiring spirits these baby girls had and what joy they brought us through their mothers ability to blog about their lives. Jacob, you will always be connected to these heart warriors, and it is through their families and the lives they touched that they will continue to live on. You were touched by these amazing little spirits.

Jacob, you have shown me what true heroes are made of. Strength, Courage, Faith, Resilience, Joy. Since the moment I laid eyes on you, I felt your tremendous fighting spirit and zest for life. It is unwavering, and unquestionable. When individuals underestimate you and your will to fight, YOU ALWAYS PROVE THEM WRONG. I am so humbled by you, and so honored to be your mommy. I will always fight along beside you. You will never be alone. You are surrounded by the love of your parents, siblings, grandparents, extended family, other heart heroes, and caring friends. Always remember that we chose the name JACOB because it represented the circle of brotherhood that you were born into, each letter representing the name of a brother in our family. J- Jonathan, Jackson, Joshua, John-Michael; C- Chad, Chris; O-Otto; B- Bob, Ben. Each of these brothers have committed to fight beside you. You are a part of each of them, particularly Jackson, always remember another aspect of your miracle is that you are a twin. Jackson loves you so much, and although it's difficult sometimes because you can't run as fast as Jackson or do some of the same physical things he can do, he is your best friend and ally. He is always so concerned about you, loves playing with you, and feels like he is your protector. What an incredible thing to be a twin. This relationship will be invaluable to you as you both enter into school next year. I can't wait for the next step in our adventure, as we all have so much more to learn from you.

Jacob, YOU ARE OUR MIRACLE and WE ALL LOVE YOU.

---mommy

Elfed-again the Disco Way!!

2008-11-18T14:15:00.001-07:00

Send your own ElfYourself eCards

High School Musical 3 - the Feinauer Version

2008-10-24T21:30:00.002-06:00

Bella's Trax Campaign

2008-10-23T23:27:00.004-06:00

Isabella did a photo shoot awhile back for Utah Education Savings Plan (thanks to her Uncle Chris) and her picture was picked up by the marketing team to be added to their TRAX campaign. It's been zooming around downtown Salt Lake for the past couple months and sadly it will be taken off at the end of October. So, if you haven't seen her yet, you still have a couple of weeks- she looks adorable. Her image is also on the UESP website: www.uesp.org,

It's been fun for Isabella to drive past the Trax trains and look for her ad and some days she even feels "famous." Jacob now calls Trax "Bella's train."

Intermountain Healing Hearts Walk/Run

2008-10-21T09:58:00.004-06:00

Uncle Chris and Jacob running toward the finish line.

Some of the little "heart heroes" in attendance at the IHH Walk/Run.

Daddy, Uncle Mikey, Uncle Chris and Grandpa Hood walking .

Team Jacob at the IHH Walk/Run. 2008

The balloons released during the angel ceremony.

The first annual Intermountain Healing Hearts (IHH) Walk/Run was held over Labor Day weekend this year and our family was thrilled to be a part of it. The group has become like a second family for us as we all share the same passion for helping kids and families with CHD (Congenital Heart Disease). Most members have a child with some type of heart defect or have CHD themselves. It is an amazing group of individuals, and we are grateful for each opportunity we have to get to know them better.

Jacob was so excited to cross the finish line (although he did take a pretty brutal fall and had to be coaxed with about four band aids), he had a great time with his uncles, grandparents and siblings. Isabella made a new friend, and Jackson "won" everyone in the "race" and we had a great time visiting with other families.

Carolyn Quigley, the President of IHH, arranged for a very touching "angel" ceremony, where the mothers of the children who have lost their battle with CHD received a bell in honor of their little angel and released a balloon after reading their name. It was a very powerful and emotional part of the day to see such strong women come together and share in their loss. These children who have earned their angel wings will always be in our hearts, and their valiant fight with CHD and fun memories will always be an integral part of our group. We are privileged to be a part of something so special, and think these little heart heroes are amazing and inspirational. Thank you for such a wonderful day.

Happy Birthday Jonny Vegas!!

2008-10-16T17:11:00.003-06:00

I am so grateful for this day, because I get to celebrate the life of my awesome and sweet husband. He makes everyday brighter and more meaningful. I love him and feel so fortunate to have married my best friend and that we can travel through this life together. To help celebrate Jonathan's birthday, here are some interesting things you may or may not know about him.

1. He secretly wants to be Indiana "Jonny" Jones.

2. He loves to read scary stories to the twins at night, especially "BIG TOE".

3. He won't wear "Polo" shirts, because he doesn't like the dude on the horse.

4. He loves peppermint ice cream.

5. If he could buy any vehicle on the planet, he would choose a large model Dodge Ram truck.

6. His favorite drink is Diet Dr. Pepper and he HATES tomatoes.

7. He loves the Olympics, and won't watch anything else during those two weeks.

8. He wants to retire in Hawaii, on the island of Kauai.

9. He always has to eat a monte cristo sandwich at Cafe New Orleans during every trip to Disneyland.

10. He is the most devoted and committed father and husband around.

I love you Jonathan, and I couldn't imagine life without you. Happy Birthday!!

Yellowstone 2008

2008-10-15T23:05:00.002-06:00

Yellowstone mosaic
Originally uploaded by lolobella2

We had our annual trip to Yellowstone and the family cabin at Lake Hebgen over Labor Day, and it was a trip to remember. We were fortunate to have Grama Karen and Papa Rick join us this year and the kids loved spending time in one of their favorite places with some of their favorite people. We drove to Cody, Wyoming to visit my 95-year old great aunt who lives at the bottom of the Shoshone River. The kids had fun collecting rocks and creating their version of a fish pond. We ate ice cream while watching Old Faithful, Bella earned her Yellowstone National Park Rangers Wolf Badge, Jacob found the coolest vintage Yellowstone car and Jackson was sorely disappointed that we saw NO WOLVES and we didn't GO FISHING! We had a bear visit the cabin one morning, made it through Isabella's high fever, and spent each night with fun card games and long talks. We love this tradition, and look forward to it every year.

Jacob's cardiology update..

2008-10-13T11:37:00.005-06:00

Today was our post-surgical follow up from Jacob's Fontan heart surgery in January and everything looks pretty good!! His oxygen saturations were at 92, which is the highest they have ever been!! Our cardiologist suspects the fenestration (hole) they left open in his heart during surgery has partially or fully closed, given the higher saturation levels. This can be good or bad depending on the patient. The surgeon created the fenestration to reduce the pressures through the conduit into the lungs, so if the fenestration closes the pressures go higher which can create long-term complications. If the fenestration stays open, Jacob will have lower saturation levels, which can effect his activity/energy levels- so it's a toss-up. We have to go in for an echo after the holidays to see what is actually going on in there. The GREAT news is that he is doing well, and after we solve the fenestration mystery, we 'graduate' into annual cardiology visits. HORRAY!! Our little man continues to be our living miracle. We are so blessed and thankful.

1st Day of School

2008-10-12T22:29:00.004-06:00

Yes, I admit that I am really late posting these pictures, but they were all so cute and excited for school to start that I had to honor the occasion by posting a few pictures from that day. Happy 2nd grade, Isabella!! Hooray for preschool, Jackson and Jacob!!

Summer Fun #7- Cafe Sabor

2008-09-30T21:58:00.003-06:00

Okay, so here is our best kept secret of the summer. Anytime we were itching for a quick and yummy Mexican feast- we headed straight up the canyon and hit our favorite hot spot - Cafe Sabor. We were tipped off by a neighbor that this hidden delight existed right off the Kimball Junction exit on I-80. They have a fun patio off the back, perfect for munching on their homemade tortilla chips and salsa, while you wait for your delicious meal. Our kids loved the different choices on the children's menu, and we were never disappointed with the service. It was truly a delicious find this summer.

Summer Fun #6- The Domingo

2008-09-28T20:55:00.004-06:00

Our serious hiker and constant leader, Jackson, who is always in search for the perfect walking stick.

A tree stump on one of our hikes, that was far too tempting not to climb on.

Jacob climbing on rocks, one of his favorite past times, although he is prone to getting stuck.
The Hood family enjoying a weekend at the cabin together.

The Domingo is a piece of land that has been in my family for generations. It is located high in the Uinta Mountains and now has been divided and passed down to my mother and her siblings. We have always spent time at the Domingo every summer that I can remember, and now it's a great tradition to bring the kids up for an easy get-away. They love going to the cabin and spending time with their grandparents. There is usually at least a few extended family members up there at any given time to visit with, and tons of fun opportunities to go hiking, four-wheeling or fishing. We love spending time up there.

Summer Fun #5- Family BBQ's

2008-09-26T21:30:00.004-06:00

Yep, that's right. We did a ton of family BBQ's this summer. We don't just save the tradition for the Memorial Day/4th of July holidays, we bust out the grill as often as we can. We spent time with parents, grandparents, brothers, sisters-in-law, cousins, aunts, uncles and friends over a tasty table of summer delights. Here are some of the pictures of the many different BBQ's this summer and the backyard activities that seem to always go along with them.

Summer Fun #4- Swimming Lessons

2008-09-25T10:03:00.003-06:00

It seems every summer involves weeks and weeks of swimming lessons and this summer was no different. Isabella joined the Liberty Park Swim Team along with 20 or so kids from our neighborhood (the carpool took a spreadsheet to figure out) and the twins went back to the Lynwood school of swimming. Isabella learned all four strokes and practiced various medleys and the boys were thrilled to take lessons with their buddies, Cooper, Thomas and Seth. It was a fun daily activity for eight weeks, we look forward to next summer when Isabella will participate in the swim meets.

Summer Fun #3- Part-Time Model

2008-09-24T22:11:00.003-06:00

One of my cute friends in my neighborhood posted this video on her blog, and I have laughed and laughed- so I thought I would share it too, for those who haven't had the experience of Flight of the Concords, enjoy.

Summer Fun #2- Soccer Camp

2008-09-23T10:03:00.006-06:00

We spent three weeks this summer enjoying the Firebirds soccer camps. It was Jackson and Jacob's first real exposure to soccer and even though it was around 100 degrees each day, they were excited to attend and participate. Jackson's competitive spirit came out of nowhere and he couldn't get enough of it. Jacob took it easier, he would participate a little more each day, he liked to take a lot of breaks and sit with mommy under the umbrella, but when he was out there it brought tears to my eyes to watch him and know that it was just a few months earlier that he was having major heart surgery. He's come so far, and even though it was VERY SCAREY for me to have him out there exercising in high temperatures, he did really well and self-regulated. What a miracle kid he continues to be, and what an inspiring spirit he has within him.

Isabella also attended the camps without complaint. She met up with some school friends and found a couple of girls from her Firebirds team, and together they had a blast. She refined some technical skills, learned to juggle the ball, and overall just had a fun time playing soccer in the summer sunshine. Even though it was hectic, the kids really enjoyed the three weeks of soccer camp.

Summer Fun #1- Shakespeare Festival

2008-09-22T22:19:00.007-06:00

Okay, I admit it, I pretty much suck at blogging. I get going for awhile and then I drop off the face of the earth. Well, it's time to take back my blog, so were going to play a little game I call summer catch up. Here's what I'm going to do, everyday this week I'm going to post a new blog about a summer activity we enjoyed or a fun new item I found over the summer. So, hopefully by the end of next week I will be caught up on blogging and I will be blog-guilt free.

Summer Fun activity #1: The Shakespeare festival. It's been an annual trip since I married into the Feinauer family. An entire group of neighbors and friends attend the festival together every year. It's always been a lot of fun, but this year we invited some of our younger friends with their kids to join us and we had a blast. We swam, shopped at Christensens, and hung out during the day. We attended the Green Show with our children before the plays, and then the kids went off to kiddie camp while the adults attended the Shakespeare plays under the beautiful summer stars in the Adams Theater. It was so much fun to be around our friends and watch our kids develop strong bonds with each other. We had fourteen children between the three families, it was super crazy and super fun. I can't wait for next year.

Go Rest High on that Mountain

2008-08-17T21:15:00.004-06:00

Goodbye Grandma Jean. We love you.

"She danced. She sang. She took. She gave. She served. She loved. She created. She dissented. She enlivened. She saw. She grew. She sweated. She changed. She learned. She laughed. She shed her skin, she bled on the pages of her days, she walked through walls, she lived with intention."

-Mary Anne Radmacher

You mean, you can actually win contests???

2008-08-07T23:42:00.010-06:00

Believe it or not, we actually won a contest. Now, I 'm not really a contest person. I rarely if ever bother to enter anything, but on a whim I entered a blog contest for a free sitting with Allison English of English Photography; and I won. So, we dragged the kids up to Park City and had a blast taking pictures in her new garden. She posted this sneak peak of our session and I am really excited with the results. Most of you know that I am somewhat of a photography junkie and I'm always on the search for a fun, new, inspiring photographer so what do you think? Have I found what I've been searching for?

Click on each picture to see the full image, for whatever reason blogger sucks all the color out of the pictures and truly doesn't do Allison justice in her work. If you want to see the images with the real color, visit her blog at englishphoto.typepad.com and click on each image to get the full view.

Our Future Olympian...

2008-08-06T22:03:00.003-06:00

In Celebration of the Beijing Olympics, Jackson has been showing off his latest gymnastics moves. Both boys want to be able to do standing flips (yes, they saw "Jump In" on the Disney channel) and so my living room couches have become the new trampolines of the house, where they practice all their tricks. Jackson's handstand form has bested Isabellas' two years worth of gymnastics lessons, which has created quite the conflict and competition in the Feinauer household. I think our gymnastics Olympian could be Jack, it seems to be his thing. What do you think? Not bad for four years old.

It's already the 4th of July?

2008-07-05T21:57:00.005-06:00

Okay, so sometimes as parents you really get it right and sometimes you just can't get it together. The 4th of July has always been one of our favorite holidays, with the day full of parades, friends, family and fireworks. This year we just couldn't pull it together. It came upon us too fast and we were too preoccupied to confirm any plans. So, all of a sudden, out of nowhere it was the 4th of July and we had nothing scheduled. So, after much panic we threw the kids in the car, headed up the canyon for some good rock throwing in the river, picked up some fireworks and pulled out the cupcakes. Jonathan put on a valiant effort in firework entertainment, the kids invited over the neighbors and cupcakes were eaten by all. After snapping the first shot on the camera and seeing their faces, I calmed down and realized that it doesn't take a lot to make children happy. We had a great time together and the kids felt that it was another fun 4th of July. Whew!

A Day on the train

2008-07-05T21:45:00.004-06:00

We were fortunate enough to spend some time with Grandpa and Grandma Hood in Heber for the annual Rocky Mountain Neurosurgical Meeting. We took a ride on the Heber Creeper and had the entire train to ourselves. We had a great dinner buffet, beautiful views of Provo Canyon and lots of cars to run through as the train chugged on down the track.

What is it like to have a child with a CHD?

2008-06-10T17:43:00.006-06:00

"It's Lasix, aspirin, Captopril...

It's wondering..Lord, what is your will?

It's the monitors and oxygen tanks...

It's a constant reminer...to always give thanks.

It's feeding tubes, calories, needed weight gain...

It's the drama of eating..and yes it's insane!

It's the first time I held him (I'd waited so long)

It's knowing that I need to help him grow strong.

It's making the hospital home for awhile...

It's seeing my reward in every smile.

It's checking his sats..as the monitor's beeping..

It's know that there is ...just no time for sleeping.

It's caths, x-rays, and boo boos to kiss.

It's normalcy ...I sometimes miss.

It's asking ....do his nails look blue?

It's cringing inside, at what he's been through.

It's dozen of calls to his pediatrician.

(He knows me by name...I'm a mom on a mission.)

It's winter's homebound...and hand sanitizer...

It's knowing this journey...has made me much wiser.

It's watching him sleeping...his breathing is steady...

It's surgery day...and I'll never be ready.

It's handing him over (I'm still not prepared)

It's knowing his heart must be repaired.

It's waiting for news on that long stressful day...

It's praying...it's hoping...that he'll be okay.

It's the wonderful friends with whom I've connected...

It's the bond that we share...it was so unexpected.

It's that long faded scar down my child's small chest...

It's touching it gently and knowing we're blessed.

It's watching him chasing a small butterfly...

It's the moment I realized, I've stopped asking..why?

It's the snowflakes that fall on a cold winter's day...

They remind me of those who aren't with us today.

It's a brave little boy who loves Thomas the train...

Or a special heart bear, or a dog in the rain.

It's the need to remember...we're all in this plight...

It's the lives that remind us...we still need to fight!

It's in pushing ahead amidst every sorrow...

It's finding the strength to have hope for tomorrow.

And no, we'll never be the same...

It's changed our family...

This is what we face each day

This is a CHD.

----Stephanie Husted

mom to Braiden (HLHS)

Jacob's story of Miracles....

2008-06-10T15:50:00.010-06:00

I've had a few people ask me why I don't blog more about Jacob's heart situation and the medical trials we've been through with his Congenital Heart Defect (CHD). I know a lot of families set-up blogs to keep a medical journal so to speak about their child's medical struggles. This was never my intention for our family blog. I guess I just started too late. At the time Jacob was diagnosed I could barely function let alone write about our experience. I wish now that I had kept a journal of it all, but I feel that it's time to keep moving forward (to quote Walt Disney). For those of you wondering what Jacob's actual medical situation was and is currently, I devote this blog entry to you.

Jacob's heart defect was found at our 20 week ultrasound. Jonathan and I were told we were having twins and then ten minutes later our world crashed as we found out one of them had a malformed heart and stomach on the wrong side. I was immediately given two (one for each twin) amniocentesis tests, to find out if there was a genetic problem and if the twins were identical.

We then waited three weeks to find out the results: the twins were not identical and Jacob's heart defect was not genetic. This was our first miracle. We met with a pediatric cardiologist at 23 weeks (Dr. Puchalski) who quickly diagnosed Jacob with Double Outlet Right Ventricle DORV). He also noted that Jacob's heart was backwards and that his Great Arteries were transposed. He then explained that he had the suspicion that in correlation to Jacob's heart condition he also suffered from a form of Heterotaxy Syndrome. It was VERY RARE, but we wouldn't know until he was born the extent of his medical concerns. With that information, we waited for the arrival of our twins for another four months.

I was being monitored very closely by our perinatologist and having to go into LDS hospital three times a week for non-stress tests. At 33 weeks, Jacob's sac had no amniotic fluid left in it and I was rushed to the University of Utah for an emergency C-section to save Jacob. The twins were born, Jackson was 5 lbs 6ounces and Jacob was 3 lbs 12 ounces. Jacob had a Blalock-Taussig (BT) Shunt placed in his heart at three days old. He was so little (3 lbs by then) I don't know how he survived it, and we started our 24 hour care clock. We had a newborn at home and a newborn in ICU for almost two months. When they ran tests on Jacob after he was born, the Heterotaxy Syndrome was confirmed. Essentially, the best way to describe Jacob's version of the syndrome is to say that the right half of his body's organs developed and then multiplied. Jacob has two right lungs (both three lobed), two right kidneys, a transverse liver across his abdomen and a single-ventricle heart defect. Because his left side didn't form, he has no spleen which puts him in a high risk category for bacterial infections. With all of this, Jacob came out fighting and eating. Our next miracle.

At six months old Jacob had the Glenn procedure performed on his heart, and due to his multiple systemic to pulmonary arterial collaterals, we almost lost him. Dr. Day (a cardiologist at PCMC) performed an emergency coil occlusion the day after his heart surgery to save his life (it was our only option left). It somehow worked. Another miracle. Jacob left the hospital almost three weeks later.

Jacob was isolated most of the next two years to keep him germ free and healthy. He thrived at home and eventually caught up to his twin. He is the same size and the only big difference between Jacob and Jackson is their endurance levels.

He had his Fontan surgery done at the age of three this past January. He did amazing with NO complications. Interestingly, his heterotaxy syndrome (two right lungs) set him up with incredible pulmonary pressures, designed to withstand the increased flow to the lungs. Another miracle. So, that is where we currently stand. There really isn't much more the doctors can do for his heart, and our hope is that it is enough to keep him going until technology develops something new. We've been told he isn't a candidate for a heart transplant because he has no spleen. But, his heart is STRONG and we have faith it will last until there is another option.

There is so much more to the story and so many more details, but the truth is, things are good right now. It's difficult to look back and remember how hard it was, how close we came to losing him, how much pain he's endured, how much pain we all endured. He is home, playing outside with friends and his twin. Our miracle baby, who has lived through so much and come so far. It hasn't been easy, and we know we aren't done with his trials; but we have all grown so much and have seen so many life-changing miracles. So, we cherish today and NEVER take him or his strength for granted. We are so blessed.

Party after Party after Party...

2008-06-08T11:16:00.004-06:00

Saturday was our Party day, and although I thought we were going to be really tired after running all over the Salt Lake valley celebrating various events, we had the BEST day. It began with our long time friends, the Kumars, who came into town from Denver to celebrate their son, Taj's third birthday. We haven't seen them in six months and it was so fun to see how much their children have grown, visit with their extended family and reunite the old gang (Foxes, Feinauers, and Kumars). Now that we all have a bunch of kids and are spread over two states, we just don't have many opportunities to get together. It was a really fun way to start our day. We then headed to Riverton to celebrate my cousin, Chassidy's high school graduation. We spent the afternoon, with my father's entire extended family. I love hanging out with my cousins and their families. Isabella "schooled" (to use her term) all her male cousins in a game of keep away, and the twins kept everyone entertained with their gymnastic maneuvers. Finally, we headed to Primary Children's Hospital for an Intermountain Healing Hearts summer picnic, where we got to meet other families who have children with CHD. We had a great time getting to know some of these miracle children and their parents. Each story was unique and inspiring and Jacob had a terrific time running and jumping all around the terrace with the other kids. When we finally arrived back home around 9:30pm and put the kids to bed, Jonathan and I just looked at each other and said, "it doesn't get much better than that!" We were fortunate enough to spent time today with good friends and family and had an opportunity to meet new friends. Not bad for a Saturday in June.

Miss Bella is 7 years old!!! A Day of Birthday Surprises..

2008-06-02T21:33:00.005-06:00

Our Isabella turned seven years old yesterday, and we had a great time coming up with a bunch of fun birthday surprises. She had a surprise sleepover the night before her birthday with her uncle Mikey and aunt Lauren who also took her to the Salt Lake Real game. This gave Jonathan an opportunity to assemble the playhouse we got her for her birthday. When she woke up Mikey and Lauren surprised Bella with a huge balloon bouquet and a life-size cutout of Cinderella. After breakfast they brought her home, where we surprised her with a new playhouse in the backyard. She was so excited and thought that was the end of the birthday fun, little did she know, we had arranged to take her and a friend to Lagoon for the day (without the twins!). She had a ton of fun playing the games, eating junk food, riding Rattlesnake Rapids, and we even convinced her to go into Dracula's castle. We ended the day at Grandma Karen's for cake and ice cream. It was a lot of fun!

Move over Harley Davidson, there's a new biker gang in town...

2008-05-31T23:55:00.005-06:00

There is a new gang running amuck in Salt Lake, and we call it the Monument Park Plasma Car Gang (MPPCG). It consists of eight boys ages 2-7 on our street who own plasma cars, and they rule the sidewalks. If you are even thinking of taking a nice stroll down our street and happen to hear the roll of thunder behind you, watch out, protect your ankles, you are about to be overtaken by the plasma gang. These boys are crazy and of course the twins are right in the middle of it all, Jackson has already broken off the top two wheels on his car, but it doesn't slow him down. I was lucky to get them to stop for a quick picture before they were off cruising our street again.

Memorial Day Part 2

2008-05-26T00:40:00.002-06:00

This series of pictures says it all....WE MISS YOU.

A tribute to the angels in my life who I love and miss...

2008-05-22T22:51:00.009-06:00

My cousin, Kevin taught me true strength and courage. He had a smile that would light up a room. He was a born leader, optimist, and outdoorsman. He loved the mountains and had a zest for life and a true and genuine appreciation for family. He valiantly battled brain cancer and was taken from our family way too early, but continues to live on in all the people he influenced and inspired. We love you, Kevin.
My Grandpa and Grandma Kennedy. Very few individuals in my life have influenced me more than these two wonderful people. The most important lesson they taught me was to appreciate the simple things in life, as true happiness stems from these experiences. I often spent afternoons in the summer under the crab apple tree drinking lemonade with my Grandfather or helping my Grandmother make her famous chocolate cake. Sweet memories of sweet people whom I love and I am grateful for.
Grandpa Powell was a funny, caring and HARDWORKING man. He was always juggling massive projects which usually involved some sort of major machinery. He loved four-wheeling, spending time in the Uintas, slot-machines, snow machining, and drinking his morning coffee in bed. Some of my best memories as a child were spent hanging out on the deck of the cabin with Grandpa feeding the squirrels. He is very missed by our whole family.
My Uncle John, whom I didn't get to know until I was 18 quickly became one of the most important people in my life. He was a Naval Officer and flew helicopters in both the Vietnam and Korean Wars. He was the only pilot, at the time, to recover an inverted helicopter (it happened when he was training a new pilot), so he was rewarded by the US Navy with a pair of inverted wings. He was the most interesting person I had ever known, and I loved the fact that he was a true conspiracy theorist who listened to ABBA. He lived in the most beautiful area in Washington and I loved spending time with him and Aunt Arliene.
My Grandpa Taylor was a gruff and tough cowboy who died when I was just twelve. I have heard many, many stories of what a mean cowboy, famous rodeo star and rancher he was, but through the eyes of a child, this is what I remember. Whenever we showed up to the ranch he was either sitting on the front porch waiting for us or inside doing a puzzle. He always took me on long drives and let me steer the truck through the winding dirt roads. He called us the "Mormon kids" and I loved to run to him for a hug and to let him check my head for Mormon horns. He always had time to saddle up Tony Pony or take me for a ride on the "Green Machine". He had a very tender heart and an obvious love for my mother and her children. I LOVE hearing all the stories about him, he is a true legend in Wyoming.
Papa and Grandma Feinauer warmly welcomed me into the Feinauer family. They were kind, generous, funny and interesting people who loved being surrounded by their children and grandchildren. They inspired a legacy of higher education, outdoor adventures, self-sufficiency, generosity and service to all that knew them. Isabella has had a special connection to "Grama Rain" or "Grandma with the white hair" since she was just little. She still speaks of her DAILY, draws and hangs pictures of her around her room, and asks to go visit her grave weekly. They are never far from our minds, and we love spending time at Hebken Lake where we feel the closest to them.
My dear friend Carolyn Keeler. Our relationship got off on the wrong foot, when I was a junior in high school and forged her signature on a note excusing her son (and my boyfriend at the time) from class. Well, I got caught and Carolyn was none too thrilled. She quickly forgave me and we became close friends for more than 15 yeas before she passed away. She had a capacity for love that was beautiful to witness. She was a nurse and cared for everything and everybody she came in contact with. She was the director of a women's shelter for many years. She loved the sun, her mustang convertible, walking on the beach collecting seashells, playing cards and having backyard BB Q's, but most of all she loved her family.
Uncle Kurt died before I had the opportunity to meet him, although he touched the lives of many people whom I love. He was a fun and playful uncle to my husband, a kind and thoughtful brother to my mother-in-law and an inspirational source of strength and courage to Grammy and Papa. His life is still celebrated throughout the Barnett family and my children LOVE to stay in his room when visiting California because he has the coolest superhero memorabilia. Jonathan's love for comics and superheroes stems from Uncle Kurt and has been passed on to Jackson and Jacob. He continues to influence the many lives of those who knew him and have come to know him through others.

A Few More...

2008-05-21T08:50:00.001-06:00

PEEK A BOO

2008-05-21T08:35:00.006-06:00

We had the kids pictures taken by a new photographer for their birthday, and she is AWESOME! Here is the first picture of the twins and I love it! I think it will be fun to blow this picture up for their room! They were actually hiding from the photographer and refusing to smile, little did they know it would make for the perfect shot!

Defending her title...

2008-05-20T22:54:00.003-06:00

Isabella and Jonathan competed in the Water Rocket category of the Bonneville Science Olympiad this week. Isabella captured the blue ribbon last year and won the category as a kindergardener competing against kids of all ages in her elementary school. She tried to maintain her champion status this week, but alas due to a faulty parachute she relinquished her title to another first grader. She had fun building, decorating and launching her rocket and we are very proud of her interest in science!

Happy Mother's Day!!

2008-05-12T23:50:00.003-06:00

There is no greater joy than being a mother. Isabella, Jackson and Jacob are my world, and I LOVE being their mother, enough said.

So, there were kids and there were cupcakes and one big CELEBRATION!

2008-05-12T22:08:00.002-06:00

We officially met Jacob's requirements for turning four on Saturday when we celebrated the twins' birthday with kids and cupcakes. We had a party at the Gymnastics Training Center for the boys and it was two hours of mayhem. I caught some great shots of Jacob doing tricks into the foam pit. I think he may have a real future in surfing, snowboarding or skateboarding. He seemed to have perfect form. The instructors were great and let the kids basically rule the joint for the duration of the party. The trampoline, foam pits, obstacles courses and rope swings were the top rated activities. The twins had a list of requirements for their party this year: first and foremost, NO GIRLS! Okay, so we compromised with them on family, they reluctantly allowed their sister and cousins BUT THAT WAS IT! The next requirement, it had to include Lightning McQueen, Speedracer, Spiderman and the Hulk (we met this requirement with presents and the cake toppers), Zach Olson had to be there (Jackson's new hero since rock climbing in St. George), and we had to have cupcakes! All I can say, is mission accomplished. WHEW! I can't even fathom the requirements for turning five.

The Twins are FOUR today!! HAPPY BIRTHDAY JACKSON AND JACOB

2008-05-06T23:43:00.003-06:00

I CAN NOT BELIEVE MY BABIES ARE FOUR YEARS OLD TODAY! Where does the time go? Well, it was nothing if not a crazy busy day for the twins . We had a plan (Jackson loves plans, he likes to count off the list of events using his fingers as the bullet points.) that included birthday traditions like presents, family, friends, toy shopping, bowling, pizza, and lots and lots of singing 'happy birthday'. Yet, at the end of the day Jacob fiercely announced that his birthday was NOT over, I believe it went a little like this, "WHAT ARE YOU TALKING ABOUT? My birthday is NOT over, there were no kids and no cupcakes!" Given that the twins birthday fell on a Tuesday, we have not had the 'official' birthday party yet, but apparently the myriad of events that we planned today did NOT fit into Jacob's description of what a birthday is without the kids and the cupcakes. What more is there to say?

HAPPY BIRTHDAY ADDISON SAGE!

2008-05-03T21:19:00.004-06:00

TEN REASONS WE LOVE OUR NIECE ADDISON:

1. She always has her tongue hanging out (see picture).

2. She has a WONDERFUL laugh.

3. She cautiously observes her surroundings before she joins in.

4. SHE LOVES PRINCESSES! Especially Giselle, my new favorite.

5. She is fiercely independent.

6. She loves to read.

7. She is always calm (even when her boy cousins are all over the place FREAKING out)

8. She is a sweet sister and always has a hug for baby sister Taylor.

9. She loves to play and sleep in her princess tent. (Gotta love a girl who likes to camp)

10. She is the best DUCK DUCK GOOSE PLAYER I have watched in action.

Happy Birthday Addison - We LOVE you!!

OH, she said she was a BROWN bunny....

2008-05-03T20:49:00.003-06:00

Isabella had her annual dance recital this week and after months of being told she was the BROWN bunny who held Snow White's hand in the forrest, I completely focused on the wrong bunny (Grey, no less) and missed Isabella's entire performance. At the very last minute, I pointed to the bunny I thought she was on stage and said something to Jonathan's cousin Heidi, who quickly pointed out that the grey bunny I was referring to was NOT Isabella. I didn't even have time to find her before the bunnies ran off stage and I had another two hours to sit through before the finale when Isabella would return for her goodbye wave. I, now, have to wait for the DVD to come out so I can watch my daughter's dance performance. Apparently, the other members of the family in attendance had no problem identifying the correct bunny and she was thrilled that her uncles, aunts, and grandparents could be there. I guess this is my lesson in listening to my children.

Let's Go Kitty Cats!

2008-04-30T21:11:00.005-06:00

Okay, so maybe we should have known when the girls picked the team name kitty cats (doesn't exactly create an image of an intimidating, aggressive hardcore soccer club) that we could have a challenge keeping these darling girls focused on being aggressive and challenging other players to the goal. But, have you ever seen such a cute bunch of girls?

This will be Jonathan's last season coaching Isabella's soccer team (he started when she was four). He will transition into coaching the twins' next fall, and so begins the test in which we find out if Isabella truly loves playing soccer or if she just likes hanging with her old man. She is fortunate enough to have a lot of friends from school on her team. Jonathan will miss the energy of these 2nd graders, and we hope to at least win one game this season, although it's not looking good. However, we are definitely voted the cutest and most fashionable Firebirds team. It is our sincerest hope that Isabella will choose to continue to play soccer, we love soccer Saturdays.

Wait, is that Hanna Montana?

2008-04-29T20:51:00.004-06:00

We spent a marvelous and much-needed weekend with our great friends the Olson's in St. George. Between the two families we had eight little kids to keep track of, and five under six years old. One of the highlights of the trip was our afternoon hiking in the red rocks. Our little guys had never been hiking before, but they acted like pros in no time. Jackson practically ran up the rocks chasing Zach who is 10 and we could barely catch up with him. Bella had fun performing Hanna Montana poses on the top of the rocks with her friend Audrey and Jacob started out tentative but soon got his footing and then there was no stopping him. I couldn't believe how high the rocks were they insisted on climbing, I, of course, was FREAKING out the entire time and trying to just keep myself occupied by snapping a ridiculous amount of photographs. I'm starting to get a clearer picture of my irrational reactions to fairly common situations where I obviously fear some sort of catastrophic event occurring at any point. Oh well, what's an afternoon without a little bit of paralyzing fear?

Easter with Grammy and Papa does it get any better?!?

2008-04-29T20:38:00.003-06:00

We were fortunate enough to spend the Easter holiday with Jonathan's grandparents in Southern California. The weather was unbelievable and the kids loved dying Easter eggs with Grammy, searching the backyard for Easter treats, discovering that the Easter bunny had found their baskets even though they were in California and having an Easter feast cooked with love by Grammy. We feel so blessed to be in a position to travel and spend time with our family who live far away.

Why we love HENRY....

2008-04-29T20:12:00.004-06:00

Henry is Jacob's new furry friend he bonded with in the hospital. My aunt Ruth brought Henry along with a book to cheer up Jacob on one of his rougher post-surgical days. No one could have predicted the relationship that would develop between Jacob and this stuffed dog. Anytime Jacob had to have an examination, take medicine, sit-up, get a poke or anything else he experienced in the hospital- poor Henry had to have it done first and sometimes multiple times before Jacob would concede to having the procedure. I wasn't sure the friendship Jacob developed with Henry would last after his recovery but make NO MISTAKE Henry is every bit as important today as he was back in January. Henry still has to undergo some unfortunate medical procedures from Jacob every so often, but usually it consists of taking YUCKY medicine before Jacob's daily dose. Who could have guessed a stuffed dog could help Jacob's recovery so much, we are so grateful for everyone who contributed to making Jacob's surgery and recovery a little bit easier on all of us.

Jacob's New Love: the Pacific Ocean.

2008-04-28T09:45:00.004-06:00

Our trip to Southern California wouldn't be complete without a couple of beach days. We headed to Huntington Beach and Balboa Island for some beach time. The kids loved the ocean. They danced, swam, ran, jumped, laughed, built sandcastles, and made new friends. It was so fun to watch them, they absolutely loved the beach. I think they would give up Disneyland next time to just have more beach days. They played until they were all three blue from being SO COLD and mommy finally had to say it was time to go. It was such a fun day!

Is there an OGRE in the house?

2008-04-28T09:19:00.004-06:00

We had promised the twins that we would take them to meet their favorite Superheroes in California at Universal Studios. The boys LOVE Spiderman, and had been practicing their web-shooting to show him. He was definitely going to be one of the highlights of the trip. They were also hoping to see the Green Goblin, The Hulk, Captain America, and Wolverine. Does it get any better for twin four year old boys? We had taken Isabella a few years back and the Green Goblin had chased her around (she was only 3 at the time) and it terrified her, so she wasn't so thrilled about us heading back there, in fact, she had come with every reason she could think of for staying home with her great-grandparents. We FINALLY convinced her to go, we drove the hour and a half to Universal, went into the park near the area of the Superheroes, only to find out that Universal lost it's contract with Marvel comics and there were NO superheroes at Universal anymore. We carefully explained that Spiderman and the superheroes had to leave and go fight some bad guys, but frankly there is not much to do at Universal if you are under the age of five. Luckily, we looked around and found SHREK. The kids got their pictures taken with Shrek and we watched the Shrek 3-D movie before we called it a day. Thank goodness we at least found an ogre!

Living the American Girl Dream....

2008-04-25T17:26:00.006-06:00

For Isabella's special day in California, she wanted to go to the American Girl store at the Grove in Hollywood. We attended the "American Girl Review" at the theater, ate dinner in the American Girl cafe, got our magazine cover shots taken, and did LOTS of shopping ending with Isabella buying her first American Girl doll, Julie. It was a dream day for our six year old, and after six months of isolation for her brother Jacob's heart surgery, SHE DESERVED IT! Isabella, we love you and are so proud of what a terrific big sister you are!

Are those Bug Eyes?

2008-04-25T00:01:00.005-06:00

We promised Jacob a trip to Disneyland after his heart surgery, and so our family made the trek to Southern California. Although Jacob loved seeing his favorite characters, blasting bad guys on Buzz Lightyear, and driving cars on Autopia (I think we went on that ride a GAZILLION times), ultimately he decided Disneyland was too crowded and it was really tough on him to stand in the lines. If we go again, we will have to figure out something different for him. We spent a total of three days at the Magic Kingdom, we dined with Minnie and Friends, ate Monte Cristo sandwiches (Daddy's favorite), danced with princesses, attended the Jedi Training Acedemy, and collected/traded A LOT of disney pins.

This parade is taking FOREVER!

2008-04-24T21:15:00.009-06:00

Jackson loved the parades at Disneyland. He insisted on watching EVERY parade that day, although he soon realized that waiting for them was not so fun. He would start out strong, picking an optimal viewing location, only to exclaim in complete distress (about 10 minutes into waiting for the parade), "parades never not come down the street, they take FOREVER!" Once the parade would begin, Jackson would get caught up in the magic and be ready and excited to start the cycle all over again forgetting all about how long it took for the parade to begin.

A Private Lunch for a Princess..

2008-04-22T09:17:00.005-06:00

While the boys were off blasting bad guys from space and driving through Autopia, Bella, Grammy and I met for a princess luncheon on the pier. To our amazement, we had the entire place to ourselves. It was a beautiful, sunny Southern California afternoon and we dined by the water and enjoyed many royal visitors. We were greeted by Ariel, and then Isabella was taught how to pose like a princess by Cinderella, sit like a princess by Snow White, wear a crown like a princess by Sleeping Beauty and dance like a princess by Belle. She LOVED every minute of it (and so did we!)

Why is my house surrounded by police?

2008-04-22T08:54:00.005-06:00

We woke up to our house surrounded by police and neighbors. When I came outside on the porch in a panic, they all started to laugh because I had no idea what was going on. I was told to go look in my backyard. To my surprise, we had two Sunday morning visitors. A mother moose and her baby calf had wandered down from Emigration Canyon on an early morning walk and decided that our backyard was a nice place for a snack and a rest. They brought out animal control who tranquilized the two animals, we took some fun pictures of them, Jackson and Jacob were interviewed by a local news station, and they hauled them off to a different canyon. It was certainly an eventful Sunday morning in February.

Snow Much Fun!!!

2008-04-20T23:36:00.010-06:00

Two weeks after Jacob's release from the hospital, we took the family up to Snowbird for some winter fun. Jacob had a great time throwing snow balls at his daddy and watching Jackson and Bella ski down Chickadee! Is this kid amazing or what?

Jackson made his first attempt at skiing. He LOVED it! He had ski school all-day and still didn't want to go back to the lodge. He wanted to stay on the mountain with his ski instructor. He was awesome!

Isabella continued to develop her love for skiing. She mastered Chickadee in a matter of minutes and was ready to hit a bigger slope. She flew through the trees and didn't think twice about going on the chairlift, next year she plans to sign up for the Snowbird Adventure Team!

Jacob's big adventure

2008-04-20T19:45:00.008-06:00

Jacob on the morning of his big heart surgery

Four days after Jacob's heart surgery

"Tomorrow...she'll walk down that hallway...

While holding her son's tiny hand...

Tomorrow...he will leave her arms..

For surgery as planned.

Tomorrow...she will kiss cheek...

Say mommy loves you...then...

I know she will be thinking...

Will I hold him just like this again?

I know these feelings all too well...

I've walked this road before...

It's true...no one can tell you...

Exactly what's in store...

That crystal ball we joked about...

Is not around to say...

You need not have a worry...

Things will go well today.

Tomorrow...she will watch him go...

(She does not have a choice)

She'll lose her concentration...

Her thoughts...her words...her voice.

And to the waiting room...she'll go...

With a mother's heart of fear...

While other's say what can I do?

She'll say...I'm just glad that your here.

She'll try to stay focused...

She'll try to stay strong...

But, I know she will wonder...

What's taking so long???

Nauseous, scared and so unsure...

Of what this day may bring...

Praying, hoping, waiting...

Not sure of anything.

Tomorrow...seems to have a way...

Of coming as it should...

You cannot hold on to today...

(As many wish they could)

Tomorrow she will let him go...

And then she'll likely pray...

Lord....please hold him in your arms...

And let him be okay."

---Stephanie Husted (thank you for expressing exactly how heart moms feel on surgery day)

mom to Braeden HLHS

Well the time for Jacob's 3rd heart surgery came upon us in January. We had been dreading this particular surgery since his diagnosis at birth. It is designed to change all of his pulmonary pressures and sometimes heart kids aren't able to compensate. We were initially told to plan for him to be in the hospital for 4-8 weeks and then more recovery time at home. We were so scared, but ultimately ready to get it over with as it was originally scheduled for November. There is nothing more terrifying that turning over your 'seemingly-healthy' child to a doctor and knowing the next time you see him, he will be very sick. He again proved that he is a kid to be reckoned with as he left the hospital in a record six days. The more we learn and understand all of the medical issues surrounding Jacob's health the more we truly believe he is our living miracle. We are SO BLESSED to have such a courageous little spirit in our home. Jacob, we all LOVE you!!

The Feinauer Five has landed....

2008-04-15T21:35:00.010-06:00

After following other blogs religiously, I have decided it is time for our family to join in the fun. So, here is an introduction to the Feinauer five:

Jonathan, the tall, dark, and handsome visionary in our family with a boyishly charming sense of humor...

Diane: wife, mother and domestic goddess extraordinaire.

Isabella: the ultra-chic fashionista who loves pink, pulling attitude and endlessly teasing her little brothers.

Jackson: the handstand king and speedster whose always up for a foot race or a game of Thomas the Train Bingo.

and finally,

Jacob: the aspiring NASCAR driver who dreams of attending the Jedi Training Academy and fighting "Darth Mater" (no, that's not a spelling error, he seems to get his movie characters mixed up at times!?!).

oh yes, and unbeknownst to most people we do actually have a dog,

Blitz, the refugee, who currently lives at Grandma Hood's after an unfortunate incident of retaliation against Jonathan....