A story I can relate to...

Baby Aiden was born this week with several heart defects (many of them are the same ones Jayce was born with) and he is now fighting for his life. Please read his blog and pray for him and his family.

http://www.babyaidensjourney.com/

Jayce's Blog

I have decided to start a seperate blog just for Jayce. Tyler and I plan to start doing some charity work in Jayce's honor soon and we wanted a place to keep his story and charity information. I will also be posting his funeral pics soon and the video that played at his funeral.

I feel really bad that I have not wrote anyone back who sent us cards, care packages, etc. I will be getting around to that as well, but for now, THANK YOU-we couldn't have gotten through this without such overwhelming support from everyone.

Anyway, here is his new website:

jaycefieldsted.blogspot.com

Jayce's Funeral

We will be holding a service for Jayce on Friday, August 14 in Orem.

Time: 1 PM

Location: Sunberg Olpin Mortuary
495 South State Street
Orem, Utah

following the funeral, there will be a graveside service and release of balloons at the Orem City Cemetery.

A Little Piece of Heaven...

Yesterday Jayce's journey came to an end. It is almost too hard to type this because we miss him soo much already. Both Carolyn and I cannot quit crying. We are so proud of all that Jayce overcame while on this earth. The doctors didn't think he would make it to his birth, and then before each of his surgeries we were told that Jayce probably wouldn't make it. However, he proved them wrong every time. He was quite a little fighter, and tried his hardest to stay here on earth with his mom and dad. After his GI bleed, swelling became too much for Jayce's body to handle, and eventually shut down Jayce's kidneys and lungs. Ironically, his little heart was the last thing to quit even though that was what was supposed to take his life. After the physicians did all they could do they allowed us to hold Jayce during the last moments of his life. We sat and held him for about two hours. That is the happiest we have ever been. We told Jayce many stories, including how his parents met, and about all of his relatives. We even said a prayer with him which was really special. It was so hard knowing that at any moment our boy would be taken from us, but we know he is in a better place now with a perfect heart. He does not have to suffer any more, and we are so thankful for that. Thanks to everyone who has been praying for our family. We could not have gotten through this challenging time without great support from our family, friends, and even strangers. We know that through all of your prayers we were granted 30 days with our little boy.

Jayce Tyler Fieldsted

July 8, 2009

to

August 7, 2009

Daddy finally got to hold his little boy. Jayce is now fishing with his great-grandpas and playing with Bear, the puppy Carolyn always promised him.

Funeral to be held in Orem, Utah, on Friday August 14th. Details will come as plans are made.

GI Bleed

2 days ago Jayce had been struggling to get all his numbers where the doctors wanted them and Tyler and I were extremely worried about him. The head intensivist in the cardiac ICU came and looked him over, changed his meds and vent settings and Jayce was diong phenomenal! Things had been going so well for 3 hours so I finally felt comfortable enough to take a nap....30 minutes later, Tyler came rushing over to wake me up (I was sleeping on the couch in Jayce's room)-Jayce had a fountain of blood coming out of his mouth. We immediately got the doctor and it was chaos. She called for the surgical team and started suctioning out his mouth trying to figure out why he was bleeding so badly while a nurse started transfusing donor blood to make up for what he was losing. It was determined that he had stress induced gastritis (I have no idea how you spell that), but basically his whole stomach had turned into a bleeding ulcer from the stress on his body of all his surgeries and the bleeding was made worse by the constant drip of blood thinner he is on. It took 2 days to get his bleeding under control (there isn't anything surgically that can be done for this condition, you have to wait for the body to heal itself) and he has received multiple transfusions. I did not realize what a toll the whole experience has taken on Jayce until today-he is twice as swollen as before and has bruising under his skin. The doctor told us that the whole episode was like taking 5 steps back in his recovery.

On the plus side-it is Jayce's official 1 month birthday!!

Hydrops Fetalis

Jayce is still hanging on, but blowing up more and more each day due to his hydrops (he had it at birth) and also post surgical swelling. His edema is so hard to treat because little is known about hydrops-he just can't put out more fluid than is being put in.....if anyone has any info on hydrops that worked for their baby, I would love to hear from you!

Update

Today was another bump in the road for Jayce. He is having a hard time with pain today and kept getting drugged and drugged-it seems like nothing works. He needs to wake up and move to get the fluid out of his system, but everytime he wakes up he gets irritated and his SAT's drop. His food was stopped because his stomach became enlarged and they were worried about a bacterial infection (NEC) that would be awful if he got it. He somehow has gained even more fluid under his skin. I feel like we took a few steps back today after doing so well for two days in a row.

Jayce's Heart

Tyler pointed out that I never really explained what Jayce's heart condition is. Around 12 weeks gestation, doctors suspected Jayce had Hypoplastic Left Heart Syndrome (HLHS)-basically for unexplainable reasons the left side of his heart never grew. I was absolutely shocked, as I had never EVER heard of this before in my life (come to find out it is quite common. Google it). There are three options when given this diagnosis:

1. Terminate the pregnancy

2. 3 open heart surgeries to re-route blood in the body

3. Heart transplant

We chose to go with the surgeries and began researching hospitals across the nation, as the procedures are very risky and the hospitals in the Des Moines, Iowa area only performed 2-3 per year. We narrowed our choices down to Boston, Philedelphia, Salt Lake City, and Milwaukee. We finally settled on Childrens Hospital of Wisconsin in Milwaukee. During our consult with their cardiologists prior to having Jayce, they discovered another complication: Jayce had double outlet right ventrical (DORV) as well-Jayce's Aorta had grown to the wrong chamber in his heart. We knew our little boy was definately one of a kind at this point. The doctors had told us that they could not tell the full extent of his heart condition until they did an echocardiogram after he was born. I will give them credit...they identified 2 out of the 9 defects Jayce has:

The picture above is of the cardiologists sketch of a normal heart anatomy.

The cardiologists sketch of Jayce's heart.

(I will add a list of the defects when I get Tyler to write them down for me...I get confused!)

As promised, video and pictures!

A Hand To Hold...

I was sad the day Jayce's IV line leaked on this hand and had to be taken out, but now I am glad because this is the only hand I can hold....the other one looks like this:

His Arterial line that reads his blood pressure started leaking last night and we really don't want to lose it, so the nurse hand to wrap it up really well to try and save it....hillarious in a way, because it now matches his foot, which looks like this:

One last photo with Grandma and Grandpa Fieldsted...

Three generations of Fieldsted boys!

(notice that the gerbal is at the foot of Jayce's bed)

Later that same day....

Jayce's gerbal friend is helping keep the cord on his cerebral oxygen monitor from indenting his head (he has pitting edema because of his hydrops).

This Evening...

Gerbi gets around! Now he is used in conjunction with a gel pack to prop up Jayce's bruised little arm.

Tyler reading Jayce the book "Move Over Rover!".

A distant memory...

It feels like a week since Jayce was taken off ECMO, even though it was just yesterday. We are closing in on the 24 hour mark and Jayce is still holding his own! We hope and pray he can continue to do so.

The last of our family will be leaving tomorrow-My in-laws are heading to Nauvoo and from there they will be going home. It will definately feel lonely up here with no one else around us. We are glad we have had family so willing to come from such far away places to keep us company and worry with us during the hard times (which are far too frequent right now).

I have video and pictures I will be posting as soon as my camera battery is charged.