Jakey's Blankies-HELP!!

WAIT!!----UPDATE!!! Apparently there are some people who have donated that are getting their mail returned to them. If you are mailing them, send them to Bishop Anderson, but make the checks payable to Summerfield Ward. Sorry for the confusion!!! If you received your checks back, I am VERY SORRY, please re-mail them, or pay via paypal above!! Thank you!

We are getting ready to start making "Jakey's Blankies!" (The soft white one under Jake's head). Jake had 2 of these. One for his blessing and one that was brown with a giraffe print that we held him with while he died. We even buried him in the white one so he would be extra comfy! These blankies meant a lot to us. They are made out of a special material called Minky and it is SOOOOOO soft!! You can't help but want to snuggle with it!! We think that every child should have one of these to snuggle with so we want to make a BUNCH of these for the heart unit up at St. Joseph's hospital in memory of Jake. We are needing donations to make these, so if you were wanting to donate, but haven't, please send your donation BY MARCH 8TH at 8:43pm!!!! We really want to make a lot of these, and possibly make a bunch every year, but we need more funds, even $5 would be GREAT!! Thank you all for your generosity and THANK YOU to those that have already donated!! If you have any questions, please e-mail me at edennison78@yahoo.com

You can send the donations to:

Bishop Anderson

Summerfield Ward (Jakey's Blankies)

2791 E Los Alamos Ct
Gilbert, AZ 85295

Make checks payable to: Summerfield Ward

Thank you very much, and if you don't mind posting this on your blogs to help spread the word, I would really appreciate it! I will invite you all to help sew!! Thanks!

Jake's Slide show

This is a slideshow that my photographer, Sara made of Jake's funeral. It is amazing and I can hardly wait to see all of the funeral photos! Pause my music to hear the music she put with the photos. Thanks Sara!! You did a great job!

Why was Jake named Jake?

Today is Jake's one month birthday! Happy Birthday Jake!! 1 month, he was only born 1 month ago. That just amazes me. It doesn't feel that way. Tyler and I visited his grave this evening and my mom had found cute flower pinwheels and put those at his grave. they are cute.

I wanted to tell you all how Jake got his name. Back in September, when we had our ultrasound that told us something might be wrong, we also found out we were definitely having a boy. There wasn't even a question about it, he was ALL BOY! :) That night we took the kids out to dinner and had them figure out if it was a boy or girl. Payton (7 yrs old) figured out it was a boy by the ultrasound! It was pretty funny! Payton was so happy and proud to be getting a baby brother! He was so excited to share a room and play with a little brother!

5 days later we found out the fateful news that our much wanted baby had HLHS. We didn't tell any of our kids about his problems right away because we didn't want them worrying, and we didn't know what would happen. We were waiting for the results from the amniocentesis and to keep us busy we were painting our living room. One evening Payton came in to me and said, "Mom, I think I know what we should name our baby. We should name him Jacob and call him Jake."

I thought it was so cute! From that point on, I always wanted him to be named Jacob, but call him Jake. All of us loved it right away, except for Tyler. We took the next 4 months trying to convince him. He was being outvoted 4-1. Finally, in the hospital, he was consenting to Jacob, and said he liked Jake, just didn't love Jacob, so we figured if he was being called Jake, we might as well name him Jake! Hence, he was named Jake by his older brother, Payton.

We wanted a middle name that represented someone we love and a family name. We chose Alan after Tyler's Dad's middle name. Tyler's Dad passed away just over 2 years ago and we wanted to honor him. Jake actually has the same initials as his Grandpa! His full name was Jerry Alan Dennison. JAD. Now he is up in heaven with his Namesake!

The photo above was when Payton was reading a book to Jake. The book was called "Come and Play Jake." Payton knew that it would help Jake get better and that Jake would love to be read to. It was so sweet and still makes me cry.

You can see the pride in Payton's eyes to be a big brother.

We bought a picture book for Maddie and Payton to put pictures of Jake in and Payton carries it everywhere and shows it to everyone he meets. It is so sweet. The night we came home without Jake, Payton was crying because Jake was supposed to sleep on the bottom bunk of Payton's bunk beds. He also asked lots of questions about why the doctors couldn't fix his heart and why he had to die. It was really hard to explain things to him that I have a hard time answering myself. I hope and pray this experience makes him want to live better to be with his little brother forever! He prays for him every night! He is such a sweety and I hope he keeps that innocence and love for Jake forever!

Baby Ethan

My good friend, Heidi, had her baby yesterday morning. We both found out that our babies had HLHS within a week of each other. She was due 3 weeks after me. Please pray for Ethan. He has the same HLHS that Jake had. He is at the same hospital that Jake and I were at, being cared for the by the same amazing heart team. He is doing great, but please keep him and his family in your prayers!! Congrats, Heidi!! He is beautiful!! (I stole this photo off of her blog!!)

Jake's Life Moments

I know I said I wasn't going to post everyday, but I got a copy of the Life Moments from my mother-in-law, Carlene. She did an amazing job and I love how eloquently she read it! Thank you, Carlene, I love how well you gave Jake's life moments!! Here it is!!

Baby Jake’s Life Moments
Feb. 12th, 2009

Baby Jake Dennison, your journey coming into this life was filled with awe and amazement, anticipation and excitement. And your brief but momentous journey through this life was also filled with awe and amazement coupled with struggle, pain, anguish and sorrow. But through it all, this valiant journey of yours, has left us with a profound sense of joy, appreciation and honor to have been be part of your life.

Jakey, you were never the ‘typical’, never ‘conventional’, never the ‘standard’. You, little Jake, were unique, special beyond all other criteria.

Your conception, and I’m not giving away any romantic secrets here, was the first miracle of this short journey. As Liz chronicles in her blog, you Jake were conceived after “two years of trying, seeing 3 different doctors, taking over 80 pills, enduring 16 shots, 21 ultrasounds, 1 miscarriage and 4 IUI procedures”. With all romance aside…..you were, at last, on your way to your new life and body.

The elation of your much-anticipated birth was overshadowed in the second trimester by the news that there may be a problem with your heart. Later tests proved that you were most likely a victim of Hypoplastic Left Heart Syndrome. With that news….we all waited for what would come next.

When the time came Jake, you apparently had plans to enter into this world with your two feet but the doctor outwitted you and turned you in the right direction days before your birth, saving your mom from a painful C-section. And so, Jake, on Jan. 21st at 5:33 p.m. in St. Joseph’s hospital, your arduous journey on this earth began. You came to greet a saintly mother, a proud father and 3 gleeful children, Maddie, Payton and Lexi who couldn’t wait to touch, rub, kiss, caress, hold, peek at, sing, dance around and coo to. Your perfect, unblemished spirit had arrived at long last in a body plagued with imperfections and therefore, shortly after birth there was more troubling news…..your heart would need immediate surgeries and your spine would also need repair at a later date. Within days, you were poked at, prodded, punctured and bandaged but no one lost hope, yet we were sadly aware of the struggles that awaited you.

On the fourth day, you were given a name and a blessing by the most cherished and choice men who were now part of your life; your father, your grandfather, your great grandfather and your bishop as well as the one ‘being’ who knew the outcome of this journey….your Heavenly Father.

It was on your 6th day of life when you were sent to have a seemingly simple CT scan but, upon returning to your room, your heart stopped sending a rush of nurses and Dr’s to your bedside to start your heart beating again. All while your parents stood helplessly by. Jakey, you could have easily said good-bye to us on that day, but you didn’t. Though clearly, we were not ready to lose you, it was you who had more to ‘give’ to us and so you lived on.

The next day was the 1st of your surgeries designed to begin the repair of your heart. You impressed the Dr’s and all those waiting to hear of your resilience and success. Jake, within the first short week, you are growing on all of us and the staff is singing your praises more and more each day. We all knew they liked you the best of all the children on that 7th floor. Now, you wear your first scar down your chest and though you are small, you seem mighty and valiant and braver than ever before.

Into week two and already you have won the hearts of many…such as the hundreds of readers who glean news from your mom’s blog and those that share your triumphs from afar along with staff members who are lucky enough to see you each time their shift allows them the opportunity to care for you. You have visitors that come daily just to see, touch and feel of your spirit. Your immediate circle of admirers grows each day as loved ones come to pay homage to your struggle.

But on day 13, a simple catheterization from your leg to your heart, that should have taken a few hours, develops into an 8 hr. ordeal that causes your heart to stop yet one more time. The sorrow was evident on the Dr’s face as he delivers the dreary news. Your weakened heart needed to rest and you were placed on an ECMO machine that would work your heart and lungs so you could begin to heal. And still more set backs when the artery in you leg, that was used for the catheterization was damaged, then your kidney failed but still Jake, you decided to stay with us. Selfishly, no one has uttered the desire to see you let go.

For the next 6 days, you were connected to a never-ending maze of tubes and machines that incessantly blinked their lights and made insidious noises. Every minute with you is precious and dear as it is evident by the myriad of people who just want to come to your side and touch, kiss, caress and rub any spot on your body void of a tube or IV.

What was it that made you stay little Jake? What was it about you that brought family and friends together to grasp the essence of God and angels that surrounded you? What triumphant little spirit did you possess that made nurses take on extra shifts to be at your side and made grown parents, grandparents, aunts, uncles and cousins hold you in such high esteem? You were courageous beyond measure, you were brave beyond what was expected. You were a warrior in a battle you need not have fought. We are all extremely grateful for this experience though it was at your expense.

And so it was, on your last day of this earthly journey, we reluctantly readied ourselves to allow you to go home, home to your grandfather and great grandparents who had made this journey before you, home to your cousins and siblings who have not yet left. Home. Baby Jake, as you began that last surgery to prepare your heart to reaccept what the machines had been doing for you, your parents were informed by a grieving surgical team, that your brave fight was nearly over. Your last minutes on earth were in the precious hold of your loving parents whispering their good-byes but also within the presence of those on the other side who accepted you as you embarked on your next journey where the love will be as great but the struggle will be no more.

Joyous, Happy Journey Jake. Thank you for the nineteen days that were sadly counted in hours instead of years but still left us with an eternity of love for one small boy who brought us closer to our own journey home. We love you.

One week ago....or a lifetime ago

It is hard to believe that just one week ago we had to say goodbye to my Jakey baby and watch him leave, while we held him in our arms. I was doing ok today until I was vacuuming and looked up at the clock and it said 3:35pm and I thought back to what I was doing just one week ago at that time. Tyler and I had just kissed Jake goodbye and told him we loved him and to say hello to Grandpa Dennison. I didn't want to leave, until the OR team made me leave. Then we went in to the waiting room to wait. It wasn't a matter of IF he died, it was WHEN, and I think that was the hardest part. The anticipation of knowing what was going to happen, but having to wait for someone to tell us it was real. A little later I looked at the clock and it said 4:15pm and I called Tyler crying as he drove home from work. Last week at this time we were holding our sweet baby for the last time as his heart slowly stopped beating. Tyler and I were the only ones in the room, but I remember it feeling very crowded and I believe it was because there were so many angels in the room and they were holding my baby, and watching us hold his body. It was very peaceful. It didn't feel frantic or chaotic and I am so glad I have that memory of peace. Don't get me wrong, Tyler and I were sobbing, but we both knew it was right, even though we hated it.

Tyler and I talked a bit about that last week of his life. I truly and honestly believe that on Tues night when he came back from the Cath lab on the ECMO machine that he should have been dead, but Jake knew that we weren't ready for him to die. It would have killed me if he died that day because when he left that morning he was sucking on his pacifier, fussing, like a normal healthy baby. He wasn't puffy and swollen or on much medication. When he came back I truly believe he was close to dying, because you couldn't feel his spirit, but he was up in heaven telling our Heavenly Father that Tyler and I weren't ready for him to die and that he needed a few more days for us to be ready. I believe that Heavenly Father let him come back to us so we could have those last 5 days with him, and for that I will forever be grateful, even though he had to suffer for those 5 days, I needed him for that time.

I was going through some photos of that day and I really want to make some into black and whites, but I haven't, so I chose some photos that I don't think look that bad, but be warned, that you might not want to look at them. This was our life his last 5 days, so this is what we remember, but if you don't want to look at them, I understand, just look at those adorable newborn photos that I posted 2 days ago.

This was what the kids saw right before he had that final procedure.

Our final kisses goodbye.

This is one of my favorites. Look at how white Jake's fingers are! He was holding on for dear life and didn't want to let go of Tyler's finger. He was having a hard time saying goodbye too!!

After he passed away, the kids really wanted to come in to hold him, so we let them. Here are some photos right after he passed, just wrapped in a blanket.

Their first and last time to be able to hold their little brother.

After a bit, we bathed him and cleaned him up, then he finally got to wear the outfit Payton gave him for Christmas. It fit his swollen little body perfectly!! Then we got to hold him again.

I'm sorry, I didn't realize today's post would be so long, or make me cry so much. I guess that is what is going to happen when I don't expect it!

I don't know if I will keep blogging everyday because my life is getting pretty boring, but I will try and post every couple of days. Thank you to all who have read my blog and comment on it. I know there have been some pretty hard things on the blog, but that has been my life over the past month. I really appreciate the nice comments and e-mails people have sent. Thank you for all being so supportive. I will continue to update so check back!!

Last Week's photos.....

First, a little about today. I know people kept telling us that no one expected us to go to church, and we had a "get out of church free" card, but, call it my upbringing, I just couldn't go just because I didn't want to face people, so we went!! It was kind of hard, and I understand people wanting to give us their condolences, so it wasn't too bad, but I was mentally exhausted after sacrament meeting, so Tyler and I went home and we let the kids go to Primary and our fantastic friend brought them home. I was hoping to be a bit more spiritually uplifted, but I just couldn't pay attention! It was pretty weird. I know the adversary is working really hard on us, since we had so many spiritual experiences in the hospital and at the funeral, and I don't want to lose those feelings, but I definitely didn't feel great afterwards today. I'm sure it will get better, and I'm sure, eventually, we will get back to church.

Last week I posted that the day was "fun." And, it truly was. We had lots of visitors all day long, which is exactly what I wanted. I think I knew that Jake wouldn't be here much longer, and no matter how puffy he looked, or how scary the ECMO machine was, I wanted the whole world to get to meet him. We had lots of visitors all day from close friends and family from both mine and Tyler's sides. It was GREAT!! In fact, we ended up having so many from my family that we had to go into the waiting room because we were getting a bit too loud!! Here is a photo of most of my family.

After this photo, we had a family prayer offered by my Dad. It was really sweet and simple, but perfect for what we all needed to hear. The spirit was so strong!!

My brother, Aaron, and his wife, Rachelle came to visit and stayed for about 4 hours! We loved it! Aaron loved holding Jake's hand. It was so sweet!! This photo shows quite a bit of what Jake looked like that last day.

This is my amazing friend, Donelle, who flew in from Texas to spend the weekend with me. I still can't believe she showed up at my hospital door!! I loved having her here, and am so glad she got to meet Jake!!

Here is a chart with his meds. This doesn't include the lipids, TPN, blood/platelettes or antibiotics!! It was a LOT of meds!!


Here is his "About Me" chart. They would fill it out almost everyday! It was pretty cute.

It's crazy to me that this was all just one week ago! It feels like it was MONTHS, if not YEARS ago!! It all still seems like a blur. Anyways, those are some of the photos I had wanted to post from last week that I never got around to!

Happy Valentines Day!!

I wasn't going to post anything tonight, but I feel that I need to, so this will be short! My husband is so clever and great about birthdays, anniversaries and holidays! He went to the store last night and bought the kids boxes of those heart chocolates, bags of chocolates, stuffed animals and bubble bath! They woke up to chocolate candies spread all over the floor and their stuffed animals and bubble bath on the sofas! I should have taken a photo, but I didn't, sorry. Then he gave me a very sweet card and a HUGE Toblerone chocolate bar! I love those!We didn't get each other anything, but I loved his card. And, normally he gets me flowers, but we already have too many around the house, so he was off the hook for those! :)

Then, the kids had soccer games and then we came home and cleaned! My house had been cleaned by my friends on Monday (it looked FANTASTIC), before we got home, but there is just something about cleaning my own house that made me very happy. Then the kids had a b-day party and then my parents came over to bring valentine flowers, then Heidi and Chris came over just to visit. Heidi made me and my girlie's CUTE blue and white bracelets, and mine had a charm that says "baby Jake." I love it and it is SO sweet! I am going to wear it always!! Thanks, Heidi! You and your family are welcome anytime!!

That was it for today, I tried to stay busy, and that helps A LOT!! I"m kind of dreading going to church tomorrow. I know I have to go at some point, but I still don't want to go tomorrow. Maybe I will just go for part of it. We will see.

Here are some photos of Jake from the NICU. This first one was when he was about 5 hours old. He kept trying to suck on his IV lines in his hand, so they gave him this pacifier! It was huge in his little mouth, but he loved to suck on it!! Notice, no tubes in his nose or mouth!!

This one was when he was about 17 hrs old. No IV's (I don't know why) and no tubes! We just wanted to run out of the hospital with him! The only line he had was in his umbilical chord!! He even got to wear the SUNS socks Payton gave him for Christmas!

This last one was about 30 hours old, and he now had an IV in his Right hand, but still cute, and you can see all of his hair!! My precious baby!! People thought he looked big in the photo, but look how small his head was compared to my hand! He was a little 5lb peanut!!

Not quite sure........

Wow, today was quiet. Sadly, the last time I said that was in the hospital, and we wanted quiet days! Honestly, I don't know what to write about today. I slept more last night than I have in the past 3 weeks. Tyler got the kids up and off to school and I just took my time waking up (sometime around 9am) and didn't get dressed until 11:30!! The kids only had a 1/2 day so we picked them up at 12pm and headed to Costco home store (my husband's favorite place).
After Costco home, we went to the regular Costco store and purchased a chair for our family room. It looks really nice in here! Then we took the kids to Red Robin and had a great lunch. It's crazy that something can make me start crying so easily. We were sitting and eating and I turned around and saw a family at another table with a small baby boy and just started crying. It is hard to see people with little babies and think I should have my baby with us. It made me really sad.
Anyways, tomorrow the kids have soccer and we have to clean to get the house ready for Sunday. I guess some things never change!! We just have to go on and not have Jake with us!! I will still try and post every day, but I hope I don't bore you! I will definately post once I get some photos of the funeral.
Oh, and here is the link to the obituary in azcentral online: This is the one that showed up on Thurs with the photo.

A Goodbye, for now

Today was the funeral. I didn't sleep much last night. I had the same feeling last night that I did on Sunday night, before he died. It felt like my last moments were coming and I didn't want to miss them. Last night, it felt like it was coming too fast, so by not sleeping it helped the night to go by slower. I didn't want to have all of the people come and tell me how sorry they were, I didn't want to close the casket, I didn't want to take him to the cemetary, I didn't want to have to do this day.

It was actually a beautiful day. I was really worried it wouldn't be nice, or happy, or that I would always look back on this day as too sad to remember. But, it wasn't! It really was nice. I had an amazing photographer there so that we wouldn't have to worry about taking photos ourselves, so you will all have to check back in 2 weeks to see them. My family and friends and ward members did an amazing job putting everything together. Here is the program:

Outside:

Inside:

My friend, Shelley, made these! She did a great job! She also suprised me with a necklace that had a charm with Jake's picture and his birthdate. It is precious. I love it and don't ever want to take it off. My amazing Sister-in-law did an amazing decorative table out in the foyer all dedicated to Jake. It looked GREAT!! I was really worried how Jake would look, but he didn't look bad at all. Most of the fluid in his face was gone, so he looked like our little baby and the best part was that his hands were still soft. They didn't feel hard, like most dead people. His were nice and sweet, just like we remembered him. I still wanted to sit there and hold his hand and stroke his head. We had so many people come-so if you were one of those people, THANK YOU!! I couldn't believe how many people showed up to support us and our baby Jake. It was amazing. I loved the outpouring of love we felt. I am so happy that so many people finally got to see our baby Jake.

The program was great. My mother-in-law did a great job chronicling his life moments, then all the cousins sang, then my dad gave a great talk on the plan of salvation, or we like to call it, the Plan of Happiness, because that is what we truly know will make us happy. Then, my fantastic Brother-in-Law sang a beautiful song. He did a great job. I can't imagine how hard this would have been and I really appreciate him singing. Then, our great Bishop gave a few remarks, then Pres. Wright (my bishop growing up), the President Pugmire. Those two men are so humble and loving. I was honored that they both came and both spoke! After the service, Tyler carried the casket out to our Suburban. It was fuzzy blue and so small, too small. Maddie carried the casket flowers. It was cute. (oh, Lexi and Payton BOTH fell asleep during the service! (Wierdos!! )

When we got to the cemetary, we took the casket out of the car, and again, Tyler was the only pallbearer and also gave a beautiful dedicatory prayer. After the prayer, my mom brought out a couple huge bunches of baby blue balloons. We had heard about this idea from Heidi, and we really liked it, so we let each of the kids (and most adults) hold a balloon, and then we let them all go at the same time! It was amazing, and very fun to watch. The kids really liked it too!

After the cemetary, we went back to the church for a GREAT luncheon. My brother, Todd, did smoked pulled pork and smoked ribs! YUUUUUUMMMMMMMMYYYYYYY!!!!!!!!! My ward adn the 20th ward did an amazing job with the food. It was all very delicious! After the luncheon, we took the kids back to the cemetary and put some flowers on his grave, along with another beanie baby. It looked really cute.

Again, thank you to all who helped make this day so special. It really was a day to remember, and I loved it.

Well, I am falling asleep, so I better go to bed, but I'm glad I survived and can look back with no regrets!

Happy Birthday, Jakey!

Today is my Jake's 3 week birthday!! Was it really only 3 weeks ago that we had him? It seems like 3 years ago! And now, I can't believe that tomorrow is his funeral. I don't think I am ready to bury my baby. It feels like I am just home temporarily from the hospital and I will be going back soon and he will be there waiting for me.
I think all of the funeral arraingements are taken care of. Heidi Anderson helped me a lot this morning helping me realize that this isn't something that is going to go away and she taught me a new word, and told me I have permission to use it! The word of the day is Crappy!! I love it! This is how I want to respond when someone asks how things are going-Crappy! or when I realized I belong to a Crappy club. Don't get me wrong, the people in this club are amazing, but it isn't one that any of us want to belong to because of the reason you are there! A crappy situation! So, you might hear me using that more often-thanks, Heidi! :)
I had a lot of other things on my mind that I wanted to blog, but I am having short term memory loss because I can't remember something I was just doing or saying, so if I think of them, I will add them. For now, I have to try and sleep so I don't look so CRAPPY tomorrow for the funeral! :)
One quick shout out to my sister Julie-THANKS!! She brought a mini mall to my house so I could try on outfit upon outfit so that I will look cute tomorrow!! I think we finally found one, so hopefully I look decent. Give all the credit to her!! Thanks, Ju!!

Day 1 without my Jakey baby

Everyone keeps asking if Tyler and I slept last night, and I can honestly say yes, we did! We hadn't slept at all on Sunday night, so I think last night, our bodies crashed and we both slept. Now, tonight might be different, but we will see!

I got to call my brother, Nate, on his mission this morning. (He is serving a mission for our church in Ogden UT). Don't worry, I got permission from his mission president first! I told him our baby had died and that I was sorry he didn't get to meet him in person and now he would have to wait a while to meet him. He was really sweet. We talked a little about the plan of salvation and that at least we knew we would see him again. He is such a great missionary! I think he was afraid of talking too long.

After that, I don't think I got off the phone all morning! My parents were good enough to do the obituary for us, I called the mortuary, hospital, cemetery, and family members. They are great to do a lot of work for us.

I think we finally got dressed around 12pm and headed out the door at 1 to go meet with the mortuary and cemetery. I hated both of those. No parents should have to pick out the casket for their baby. It will only be 2 feet long. That made me really sad. You just think of caskets for big adults, and his is way too small to seem real.

My dad was great to go to the cemetery and find some plots and we bought 2 (one for Jake, one for Tyler and I) and my dad bought 3 others and reserved 5 others! I guess he wants all of us to be together! It will be great!

We had dinner brought by our ward and lots of nice phone calls and notes. I know lots of people want to talk to me, and if I don't answer the phone, don't take it personally. We really were gone most of the afternoon, and sometimes I just don't want to cry on the phone.

Here is the obituary that my mom sent to the AZ republic that will run tomorrow. On Thursday it will also include this photo. If anyone wants to come to the funeral, please come! We don't want anyone to feel unwelcome at the services. Here is the link

Jake Alan "Baby Jake" Dennison
Dennison, Jake Alan "Baby Jake"

"Baby Jake" was born Jan. 21, 2009 and was loved by his family for 19 days before he was taken back to his Heavenly Father on Feb. 9, 2009. All who were around Baby Jake felt his sweet spirit. We will have him forever. Thank you to the special doctors and nurses on St. Joseph's 7th floor for the 19 days. Baby Jake is loved by his parents Tyler and Elizabeth Palmer Dennison and brother Payton and sisters Maddie and Lexi. He is also loved by grandparents Carlene Dennison, David and Kathy Palmer and great-grandparents G.O. and Caryl Christopher. He will be taken care of in heaven by his Grandpa Jerry Dennison. Services for Baby Jake will be Thursday, Feb. 12, 2009 at 1:00pm at the LDS Westwood Chapel 848 N. Westwood St. Mesa. Visitation at 12:00pm prior to the service at 1:00pm. Internment at the Mesa Cemetery. In lieu of flowers, please send donations to Summerfield Ward 2791 E. Los Alamos Ct. Gilbert, AZ 85295 to make blankets for St. Joseph's Hospital.Gilbert, AZ 85295"

I have a friend that made a beautiful SOFT minky blanket for Jake (you can see it in the blessing pictures-Day 4) and all the nurses loved how soft it was, so we decided that we would make a bunch of minky blankies to give to the heart unit in Jake's name. If you want to donate, please feel free. We are going to start making them sometime in the next few months.

I might post some photos tomorrow of Jake and the kids holding him, but I need to make them black and white first. See you tomorrow.

Day 19-An End and a Beginning

Today was and still is a blur. Tyler and I didn't sleep at all last night. We stayed up with our precious baby. He kept opening his eyes and looking at us. He would squeeze our hands and even smiled a few times. At 7am the surgeon came in and informed us he was pushing the procedure to 2pm, so then we were in for even more waiting! Our amazing night nurse, Nicole, decided to stay all day with us after having worked for 12 hours. Tyler and I took a few naps but Dr's and specialists kept coming in. The kids came up with my parents at about 1:30 and kissed and hugged baby Jake. Carlene (Tyler's mom) also came up. At about 2pm the surgeon came in and asked us what we wanted him to do if Jake didn't come off the machine very well. We had been discussing this all night long and we felt it was very selfish to try and keep Jake here, so we told the surgeon that we wanted him off the machine and if he did well, great, if not, we didn't want him to suffer anymore. The surgeon thought that was a good idea. (I don't know if I mentioned this, but the leg ultrasound, yesterday, showed no flow to his right leg and it was slowly dying as well). SO, they let us touch and kiss our little baby a little longer then they told us it was time to go. We went into the children's playroom and hung out with our kids. After about 1/2 an hour they told us they started. At one point Tyler and I both went into a different room. Tyler got up for a moment and all of a sudden my heart just sank and I felt a big hole in it and I knew something had happened and my baby wasn't doing well. 30 seconds later our nurse, Nicole, came to get us. She said he was losing lots of blood and his pressures were dropping. They had already given him more blood but the surgeon wanted to talk with us again. We were taken to a private conference room and the surgeon came in and told us Jake was bleeding from lots of places and they didn't know if they could stop it and asked if we wanted them to stop or put him back on ECMO. We decided to have them stop. They asked if we would like to go into the room and we both decided to go in. When we walked in we could see his little heart still slowly beating as they were stitching up his chest. after they stitched him up and cleaned him up a bit they took his breathing tube out and let Tyler and I hold him. We got to hold him as he left this world. IT was peaceful and quiet. His little heart stopped beating at 4:30pm. Our little Jake is no longer in any pain and doesn't have to deal with all of the problems his little body had. My parents told the kids and they all decided they wanted to hold him so they came in the room and each of them finally got to hold their little brother. It was a sweet and tender moment and I am so glad they were there. My parents and my mother in law also got to hold him. Even dead, you could still feel his spirit in the room and none of us wanted to leave. The staff was so great and compassionate. They finally had Tyler and I help them to bathe him and he even got to put on an outfit! It looked so cute on him. Then all the kids held him again. We talked about how Jake is up in heaven with Jesus and Grandpa Dennison and Mutti and Grampy and Grandma and Grandpa Palmer and how he doesn't have all of these owies all over him anymore. Of course the kids cried and so did we. His time was so short, yet he touched us all so much. We know that we will see him again and we will be together forever, but we can still be sad that we don't get to take him home right now. I am just in awe of the miracle and beauty that I have seen over the past 19 days. How blessed we are to have him in our family. I am so grateful for the knowledge that I have that Jake will be reunited with his body, but it won't have all of the problems that he had. I am grateful to know that I will see Jake again very soon and that he is perfect. What an amazing spirit we had for such a short time.

We are home now, and nothing has been as hard as leaving him at the hospital and having to come home without him. I sit here typing and still can't believe it all happened. The past 2 1/2 weeks still seem like a dream. Anyways, I just wanted to let you all know what happened. We are wanting to do the funeral either Thursday or Friday. I will post when I know more.
Thank you all for your prayers. I know Jake fought so hard for us, so that we could have him here. I know your prayers helped to strengthen him and our family. I don't know how I could have gotten through this without everyone, even those I don't know. Please know that I will be forever grateful to all of you for everything you have done.

Baby Jake Alan Dennison January 21, 2009-Feb 9, 2009

Day 18-FUN

Today was a fun day. We told anyone that wanted to to come on up to see Jake. It was quiet at first and Jake was stable, but the fun began around 12pm. We started getting lots of family visitors and a few close friends as well. The visitors continued until about 11pm!! It was great! Everyone who came saw what a special spirit we had and they also loved getting pictures with Jake holding their fingers! It will be hard to figure out which finger is who's! I don't have time to post photos right now because I want to spend as much time with Jake as possible, but I wanted to let you know what great visitors we had, and I know there were lots of other people who wished they could visit but weren't able to. Please keep our family in your thoughts and prayers tomorrow. I will post when I am able to (which will probably not be until late late tomorrow night!!)
I also wanted to give a shout out to my sisters who made sugar cookies for all of the nurses that even said "thanks" on them! They are a HUGE hit! Also, our amazing nurse, Nicole, made a blanket for Jake as well as a beautiful CD for us to listen to. I will try and post those songs. They are from the Anderson family who lost a baby that had heart complications as well.
Thanks to all!!

Day 17

Today was fairly quiet on Jakes end. Overnight he lost LOTS of blood because of all the blood thinners he is on, as well as the TPA they put in his leg. They had to give lots of blood and platelettes. His head is a bit bigger, but overall he is still looking pretty good. His leg is still very dark purple and I can't tell much of a difference, if at all. The surgeon wants to take him off of ECMO on Monday morning at 7:30am. He doesn't know how he will do, but it will be a struggle.

Some of my FANTASTIC girlfriends came over today and brought Macayos for lunch! It was delicious and very fun to sit around and chat with them. Then I brought them in to see Jake and we all just sat and stared at him for a really long time. It was great.

Tonight we took the kids to a Happy Birthday Dinner for Jerry (Tyler's dad). His actual birthday is Tuesday, but all of us went out to one of his favorite Chinese restaurants. Jerry died over 2 years ago, but we still love going to his favorite places to celebrate his birthday. It was really fun. Jake's middle name is Alan after Tyler's dad, Jerry Alan Dennison, and in fact, they share the same initials!! JAD!! He is a fantastic guy and we were proud to name Jake after him.

I always miss Jake when I am not here and Tyler helped me realize why. Jake has this amazing spirit around him that makes you just want to sit and look at him. It is true, and that is why I never want to leave and am perfectly content being in this hospital room. I truly believe the veil is very thin for him and that there are angels surrounding him and us and that is why it is so comforting to be close to him. His sweet spirit can be felt by all. Boy, do I love my little Jakey baby. Anyways, thanks again for everyone's love and support. I know that there are LOTS of people reading my blog and I am very humbled that so many people are interested in my Jake. I wish I could have you all come to the hospital and meet him, just to feel the love that surrounds him, but I hope you can at least feel a little of this while you read my blog.

Here are a few pictures of the kids and Jake today! We covered up the Cannulas (from the ECMO machine to his neck) and his tummy and made it look like he was all snuggled, so the kids didn't see any blood!

My sister Julie has only seen him for the 30 seconds after birth and then last Tues night when he looked horrible, so here she is when he looks TONS better. You can see his Cannula (dark red and lighter red tubes).

I found this photo on my camera-it is SO SWEET!! It is a photo of my dad's hands next to Jakes. Isn't this so sweet! I love it. I love holding Jake's hands because he sqeezes your fingers so well!!

16 Days old

This morning the Dr's were really worried about his leg so they ordered an ultrasound to see the blood flow. The ultrasound couldn't find any arterial blood flow or venous blood flow so the surgeons and dr's got together and decided to bring in a vascular surgeon to see what he could do. At 1:30 they decided to do an exploratory surgery to see what was causing the blood flow to stop. Since Jake is in such critical condition they can't move him down to the OR, so they brought the OR up to our room! Tyler and I made them give us 10 minutes alone with Jake and we had a very sweet moment together. We told Jake it would be ok if he didn't want to stay with us, and wanted to go back to our Heavenly Father. We told him if he did stay it would be a lot of hard work and he would have to fight. But, if he did go back to Heavenly Father we understood and we would see him soon and he could learn how to throw a curve ball from Grandpa Dennison. It was a really sweet moment. When I pulled the curtain back for us to go outside the room, guess who was there??????????
DONELLE!!!!!!! I was soooooooooooooooooooooooooooooooooooooooooooooo excited!! It was completely unexpected, but sucha great suprise at the perfect moment! (Donelle is my best friend but currently lives in Texas and flew in to be with us as a suprise!!) She got to come in and see Jake and then they kicked us out to wait in the waiting room. It was a great distraction to have her in there sitting with us and waiting!!

After about 3 hours they came in and got us and explained that they could find arterial flow all the way up to the heart, but not past his groin area that had been damaged, so they put a catheter through is arterial vein and realized that the artery would spasm and block all blood flow. They gave him some medication directly into his leg, increased his heperin (blood thinner) and also started him on Flolan, something that helps to made the vessel larger to provide more area for the blood to flow through. Now we wait again to see what the leg is going to do. He will probably lose a couple of toes, but hopefully that will be all. Please continue to pray for him and his leg.

On a totally different topic, I have been pumping breastmilk since Jake was born and the hospital has been freezing it. They told me the freezer was getting a bit full so they gave me 2 bags of MY milk!! This is only from Feb 1-Feb 5th!! I must say, I was very impressed with myself!! I have never been able to breastfeed any of my kids very much, but with Jake, I am determined to give it my best shot! My sister already took home 2 other bags this size! Now we just have to get to the point that Jake can start re-feeding on Breastmilk!!

I know, way more than you needed to all know, but I am very proud!! Woohoo!!

Day 15-The waiting game

Today wasn't too bad. It was pretty quiet on Jakes end in that he held his blood pressure up and was quiet. We had some good news! Jake had a head ultrasound the night he came back from surgery that showed a brain bleed, then Wed morning they did another ultrasound that showed a normal brain, with no bleed, so they weren't sure which ultrasound was correct, so today they did a third head ultrasound and there is no bleed! They think that the first ultrasound was so close to after surgery that there was lots of fluid and trauma that made it look like a brain bleed! So, this is GREAT news, because if he did have a brain bleed he needed to get off ECMO asap. Now, as long as the head ultrasounds continue to look good, they will keep him on ECMO a few more days to let his body recover. They really want him to start peeing so that it shows his kidney is functioning.

Some bad news is that his right leg is VERY PURPLE because of the damage to his veins in his groin. The dr's aren't sure if it is a spastic artery or a blood clot, or what. They tried an ultrasound on his leg but couldn't find any arterial flow, but that might have been because the vein is causing pooling around the artery so they can't get a good picture. They have started him on some Low Flow medication that will hopefully break down a blood clot and also help to dialate the blood vessels to allow more room for the blood to flow to the leg. The hardest part with his leg is that he is in a lot of pain when you touch it. He is on really heavy pain meds, and they increased it 2 times today, but whenever you touch his leg his eyes get really big, then start to tear and then he winces in pain. His hands also clench into fists and his blood pressure goes up, so we know he is feeling it. It is really hard to watch him grimace. I wish I could take the pain away for him. It is a big waiting game and hard not to see any progress. He started losing more blood today, so he has had 4 transfusions alone, so all those people who have donated blood-THANK YOU!!

Anyways, that is the update today. I won't post any photos, still, but may in a few days. Unfortuantely, we haven't lost any of the machines. In fact, they added more, but we will take things VERY slowly. They said they will probably wait through the weekend to take him off ECMO, but he will have to go back to the OR for that, and at that time they will do the surgery that was originally intended on Tues.

Thanks for all who are thinking and praying for our baby. The amount of people supporting us is amazing. If you don't want to leave a comment on my blog but want to e-mail me, please feel free! I might not respond right away, but I definately don't mind!
Anyways, I'm going to head to bed. The Dr's start coming at 7:30am and don't stop throughout the day!! Please pray for his leg and for his kidney! Thank you!!

Day 13-14

Sorry I didn't post about yesterday. It was a very bad day. Here is the e-mail I sent out to my family.

I'm sure everyone heard what happened yesterday, but I thought I would let you know a bit about what happened and what might be expected.
Jake went in yesterday for a heart catheterization to open up his ASD (atrial septal defect)-a hole that everyone has in utero that closes after birth, and they were going to re-open to allow the blood flow to the body. They put in a stent in his PDA (Pulmonary ductus artery) last week during surgery, and this was the second part to the surgery. They didn't have to re-open his chest, it was going to be all through a vein in his groin, all laproscopic. The Dr went to check the PDA stent to make sure the blood was flowing properly and when they put some blood flow through it the stent moved and went out of place, which is has never happened before. When the Dr went to retrieve the stent Jake coded and they started CPR. They called in the 2 other main surgeons and put him on a machine called ECMO. They had to do CPR for 30 minutes until they got him stable on the ECMO machine. ECMO basically does the function of the lungs and the heart to give the heart and lungs time to heal. Jake now has 2 huge tubes coming out of his right side of his neck. One pumps the deoxygenated blood out, gets it oxygenated, and the other pumps it back into his body. After he was stable, the Dr tried to put the stent back in, but the area they put the Stent in is very short, but very fat, so the Dr had to put in another stent that was much larger. The vein they used in his groin is obviously very small, and in the process of getting the new stent in it also damaged his vein. After the stent was in place, the other surgeon came back in and repaired the vein as well as putting in a chest tube to drain the blood around his heart. The good news was that the artery in his leg/groin area is doing fine, but blood is draining from the vein and pooling and pressing on the artery, so his right leg is purple, but they aren't worried about it. So, after being in surgery from 11am-7pm (it was only supposed to be 3 hours), he finally got brought back into the room and we got to see him at 9:30pm. It was really hard to see him because he is a purple grey color and very swollen. He has the 2 lines for the ECMO machine coming out of his neck, 1 IV in each of his hands, and 2 iv's in each leg in his groin area. He is also intubated, and has a chest tube to drain the blood. His kidney did not do well during the trauma, so the ECMO machine is also giving him dialisis. On the head Ultrasound last night he had some bleeding in his brain, but this mornings ultrasound didn't show it getting any worse, but because he is on heavy doses of heparin (blood thinner), they are concerned it could get worse, but the only way to stop it or prevent it is to get him off of ECMO.
It is a lot. They will probably keep him this way for a few days and then slowly wean him off of the ECMO. He started opening his eyes this afternoon, and now opens them to voices, and also has moved his arms a couple times and even twitched his leg! It doesn't sound like a lot, but we love ANY good news. Lots of people have asked what they can do, but the only thing we can do is pray, so please keep praying. Also, people have asked if they can come visit, which is fine, but just know that he is very critical and we prefer only small, healthy adult groups, but we would love to see you, just know he doesn't look the same as he did!
Anyways, I think that is all. I am going to post photos of my room with all of the machines on my blog, but I don't think I will post photos of him right now.
Thanks for all your love and support! We really appreciate it!
Love,
Liz

I'm not going to post any photos of Jake from today, but here is a photo of most of the machines. I couldn't get them all in, but I was in the hallway taking a photo of my room.

The big machine in the middle of the room is the ECMO machine.

This ECMO machine is amazing! To think it takes all of that to take the place of that tiny heart and lungs. It makes me really appreciate Heavenly Father's body that he gave us! Wow!!! Luckily today has been fairly quiet, and hopefully we will get a little more rest tonight! It was quite busy in here last night. Thank you for your prayers, and please keep them coming. I will try and post tomorrow!!

Day 13-Heart Explanation

Hi Everyone,
Jake is going in for his heart catheterization in a little bit, but Tyler put this explanation of Jakes heart in easier terms to understand, so I thought I would post it here, since it is so rare, and pretty difficult to understand. I will post about how he did as soon as he is back!! Here you go!!

Hi everyone. Most of you have heard the news of Jake's surgery, but I at least wanted to write and keep you all informed. He had his 1st surgery last Wednesday. (I'll get into the details in a minute). Your prayers have helped, as he made it out ok. He had been intubated since Tuesday night and they pulled that on Sunday since he was starting to breathe on his own. However, he still needs help, so he's extubated (as opposed to intubated), which means he's being fed oxygen through the nasal cannula. He was slowly weaned off the Fantanyl (pain meds), which is causing him to slowly wake up. It's so nice to be able to see his eyes again. Although he's still getting nutrition via an IV, they are slowly feeding him milk through his ng tube.

Jake has another part to this 1st surgery, which involves stenting the 2 atrium so that blood can flow between them. Having a hole between the 2 atrium is ordinarily considered a heart defect and requires surgery to close it, but in Jakes case, it's required to stay open, which I'll explain in a minute. Although this proceedure is not as invasive as the others, it still requires him to undergo general anesthesia, which is always a dangerous thing, especially considering the fact that Jake coded after the 1st time he went under anesthesia. So please keep us in your prayers.

A lot of you have asked details on whats actually going on with his heart, and its a little involved, so we haven't really got into details on his situation. But since many of you have asked, I'll try to explain it simply. If you can remember what the 2 sides of the heart do, it will help you understand this immensly. The right side of the heart receives all the blood coming back from your body (of course this would be oxygen deficient blood since your body just used the oxygen). The left side of your heart is responsible for pumping re-oxygenated blood, or oxygen rich blood, to the rest of the body. This is the side that Jake does not have. So you can see, even though his right side is working, if the side that pumps blood out to the body is not working, it would not be compatible with life. So once the right side gets the blood from the body, it sends it off to the lungs to get the oxygen back in it. Once the blood comes back from the lungs (filled with oxygen now), it goes into the left side and then out to the body. If you can remember that basic concept, it will be easy to understand what is involved with his surgeries.

The end result of the 3 surgeries, is to re-route the blood (when it comes back from the body) to go DIRECTLY to the lungs, instead of to the right side of the heart. Then, when it comes back FROM the lungs (filled with oxygen now), it will be re-routed to go to the RIGHT side, not the left side as it normally would. From there, they re-attach the right side of the heart to the aorta, which will carry it to the rest of the body. So in effect, they completely take the LEFT side of the heart out of equation, and turn the RIGHT side into the main pumping chamber. Of course, the job that the right side ordinarily has of collecting the blood from the body. . .is no longer required, since the blood is now going directly to the lungs when it comes back from the body. Does this make sense? (The end result is a 1 sided heart, instead of a normal heart with 2 sides).

So until all this is accomplished, it's necessary for blood to be able to freely move within the heart, from the right to the left, and then out to the body through the aorta. This is why he needs a hole between the 2 atrium, which is what they are going to stent open tomorrow. This is a short term fix though, so the 2nd and 3rd proceedures revolve around getting back to that end result I told you about in the previous paragraph (and then they'll re-close the hole in between the 2 atrium).

Anyway, the end result is the same, but the ways to get to that result vary slightly. The newest way to do all this is called the "hybrid" and the whole proceedure is only about 2 years old. In fact, we were told that only 4 other people in the history of Arizona medicine have undergone this proceedure. In the world, less than 100. So in that regard, Jake's a pioneer. Here's an interesting article written by the Chicago Medical Center on how rare the proceedure is: http://www.uchospitals.edu/news/2004/20041018-hybrid.html

Anyway, thanks again for all your prayers.

-Tyler

Day 12

This was how my morning started! It started at 12am giving him a bath (a wipe-down), and then he got that brown thing off of his head, then I got to hold him!! WOOOHOOO!! It felt so good, even though I was so tired, it was totally worth it! He is so cute, and I loved having him so close, and he smelled so good!! :) It's amazing how the little things are so big and great with him!!

Otherwise, today has been pretty slow and quiet. He has his catheterization tomorrow at 12pm and has to go under general anesthesia. This is a catheter in his heart to keep the hole open. They don't have to cut him open, it is all laproscopic, but still scary to me!! Tyler will be here with me. Please pray for him, again! Thanks! I will let you know how it goes!!

Day 11-and all Problems

Happy Superbowl Sunday!!-Too bad the Cards lost!! Tyler cried and Jake cried too!!

This morning they started out early! They started lowering his Oxygen levels and stopped at 30% in anticipation of removing his breathing tube. At 6am they stopped feeding him in preparation for extubating him. They also stopped his Fentanyl (pain med). I thought he was a good baby and didn't mind the tube, but boy was I wrong!! Once that Fentanyl wore off he started squirming, and tried to gag the tube out of his mouth. Then, you could see him cry, but no sound would come out, just the look on his face. It was really hard to watch!Here are all the machines and baby Jake. There are a few less machines on the right side, but they are slowly getting removed!!

They took x-rays and lots of blood gases to check all of his levels and they felt he was ready for it. Finally, at about 1:15pm he was extubated and the put oxygen with the little prongs in his nose. He seemed to still be having some problems so they put him on a machine called High Flow that forces moisturized air into him and sort of puffs air into him to help open his lungs up. Tyler and I and the kids went to the Gardners home for a Superbowl party, and Grandma Dennison came up to babysit! He loves his babysitters! I got back to the hospital with about 10 minutes left in the game. My parents also came up to visit and watched the sad ending to the game. Here he is right after being extubated. He almost seems to be smiling! I would too, if I could finally cry, make noise, and suck on a pacifier!! So cute!!

I think this is one of my favorite photos so far! Check out that belly button!! I'm interested to see what it will look like after it falls out!

Well, let me tell you what else is wrong with Jake. So far, we know he only has one kidney and it is really low in his Right abdomen, but it seems to be working well. He has one undecended testicle. He has a tethered cord in his lower lumbar, which they aren't concerned about right now since he is able to move his feet and legs, but we will have an MRI in 3 months to see the best course of action. He also has 4 extra vertebrae in his lumbar area, causing severe scoliosis. They will also look at that when he goes in 3 months. The tethered cord will most likely require surgery, but they aren't sure when because of his heart condition, they don't want him undergoing surgeries his heart can't handle. The extra vertebrae might be fine the way they are, or he might have to have rods, but we don't know. He only has about 9 ribs, when you are supposed to have 12, so his torso is a little short. They don't know the long term effects of this, or if it will cause any problems with growth to the lungs. He also has only 4 cervical bones (the bones in your neck that give you a long neck) when you are supposed to have 7. Again, they don't know if this will be a problem, or if he will be fine. Unfortunately, there are a lot of "we don't knows" and "we aren't sure." It is kind of frustrating, but at this point, we are going to take things a day at a time and just be grateful for each day!! We can't worry about what may or may not happen in the future or we will go crazy!! We are just blessed and glad to have this little miracle in our family!!