Saturday, August 31, 2013

A little bit of normal

I never thought the day would come that my idea of a nice morning out would be me and the girls at Costco... But here you go! 

There was another patient that need an in-room procedure. So, I got the boot. They kick everyone out except Drs and nurses and turn the pod into a mini OR. I knew I couldn't go in for a couple of hours. Oh, how to pass the time??? Your thinking what I'm thinking right!? Costco with my 3 best girl friends! Ok. Maybe not the ideal relaxation experience, but really it was great to feel kind of normal. All I had to worry about was what kind of chicken nuggets I was going to buy (we went with Mickey). 

I can't wait until I can be normal again. Hopefully sooner than later. I am back at the hospital. Pumping, eating lunch, and waiting. Jake should start to wake up today from all the sedatives. I'm excited to see his big eyes again. 

A New Chapter!

Onward and Upward



It is a new day and we are on to the next step in Jake's recovery! We are so grateful that he has made it this far. We pray that he will continue to fight the rest of this battle. May he endure to the end, and overcome this grand obstacle before him. The Lord is on his side, giving him strength. I can feel his spirit as I stand by his bedside in support. My testimony of the gospel has been fortified through this experience. I have faith and hope in The Lord and his plan for Jake, my family, and I. May others be reinforced through this. I hope that through this others have seen the miracles of our Lord, Jesus Christ. His hand has been in this, lifting us up. I can not count the blessing that have been bestowed up on our home. I am gratefully surprised by the Lord's blessing. 





Hearts of Harvest


I want to express my gratitude to the Hearts of Harvest foundation. What an amazing organization! 



I am a typical stay at home mother to 3 girls. Brad,my husband, works very hard to support our family. Through all of this we have not even begin to think about the financial burden that this experience is going to put on our lives. At this point we just want to get Jacob well. I want to once again hold my baby boy, kiss his cheek, and take him home. Unfortunately, we still have a long haul ahead of us. 
Meanwhile, our other three girls have been at my mom's. She has been doing her best to take care of them full-time as well as her responsibilities as caregiver for her elderly mother, but she needs help. 

Hearts of Harvest reached out to us! With the help of my great friend Jen McDonald and her aunt, Foundation Directer Becki Brown. Through the hospital and a social worker we were able to receive a grant to help us pay for child care. Now, because of Hearts of Harvest, she can afford to be with them all the time. Given the grant, they have been enrolled in a local, at home play-school. Here they can make friends to support them through this difficult time. I want them to have positive memories after this experience has passed. Hearts of Harvest has made that a possibility. Thank you Hearts of Harvest! 


A special thanks to Jennifer McDonald,  Becki Brown, and Lucile PackardChildren's  Hospital.  







Friday, August 30, 2013

Captain's SK8

Tonight we went to Downtown Redwood city, just to get out of the hospital for a bit. We came upon captain's. what a great shop! 


Thanks Guys for all your support and Love! God bless! Can't wait till our little motor-man is ready to wear his shirt! 

Captain's downtown Redwood City
Captainssk8.com

One Gear-head Skater to another! 

Surgery is Finished!

I guess it went really quick! I can't believe they are already done. They told us we would be gone at least 2 hours. I don't even think its been 1 hour! So excited to see him! I promise no more gross chest pictures


It's Time!

It's time for Chest Closure! 

Here comes the portable OR...

Time for us to leave. They told us it will be 2-3 hours before we can go back it. Good luck little man, we'll be praying! 

Just in case...

We are sitting bedside. The nurse is doing all of her pre-op prep work. Then she leaves for a second and comes in with 3 firemen, a hospital adviser, and the charge nurse. Oh how my heart stopped. My mind went to the worst place possible, until they told me what was going on. 

The hospital was having a evacuation evaluation. Jake happened to be the hardest evacuation in our section of the unit. This was the hospitals way of trying to teach the fire men how they would evacuate a patient like Jake. What tubes and pumps would they need in an emergency, and what they could do with out. Luckily there is no need for that now, and hopefully there won't be a need for that. 



As far as surgery, until they are in here and kicking us out it is always subject to change. 

Thursday, August 29, 2013

Surprise... No surgery

That's right can you guess what the Dr said today??? 

"Looks like he will be having his surgery TOMORROW! First thing" We had one Dr pushing for today and another pushing for tomorrow. Turns out the attending surgeon broke the tie and opted for closure tomorrow. I still won't believe it till I see it. At least they are being cautious.

On another note: he has found his new favorite thing. He is on the ventilator until after chest closure and it gives him a lot of gunk in his throat and mouth. They try really hard to keep his tube clear, but every now ant then he gets spit and mucus in the top of his throat/mouth. That's when they pull out the suction wand (just like the one at the dentist). He Loves it! ❤ He puckers his lips around and sucks on the tube. Then it almost looks like he's smiling. So Cute! 



Just give me some Milk! Moo, moo, moo, moo...

RENT anyone!? I feel like all I do is eat and pump. Intermittently I am able to sit bedside and check in, but at the moment pumping is running my life! 
(The View)

This is the nice room or the CV mommies. The NICU was worse. I still have to go in there if the CVICU room is being used, but there are not as many of us. The NICU pumping room is like the cows going on for milking... It's a little room with pumping stations separated by curtain partitions. (Real up-lifting) 

In light of my current locale here is a little Nursing Humor... I hope you find it as funny as I did! (I'm pretty sleep deprived, so you probably won't!) 
























New Update!!!

Jake is "back to normal baby size!" All is looking really good. The Drs seem to think he is ready for chest closure today for sure. As long as the surgeons have availability in the operating schedule... So, Tuesday. Who knows!

Earned his First "No No"

 Last night he was trying so hard to pull out his Ventilator, that he disconnected it 3 times, earning his first "No No." That is the cast looking brace on his arm. Named for the "No, no, no... Don't do that!" 



What a fighter! 

Jacob is 4 Weeks!

Reach Across Oceans

As many of you know, all my cousins on my mother's side live in Norway. (Hai) 



My mother and I have recently received some messages from some of my cousins out in Oslo who are following Jacob's progress. Then last night my uncle called to check up on his progress and give words of encouragement. 

Turns out my cousin, Janecke, has a daughter who went through a similar surgery to Jake. Janecke knows exactly what I'm going through and she is such an example to me. 

Jake has touched so many hearts and lives already, at 4 weeks. I never would have though his grasp would be one that crossed oceans! 


Do Not Fear

Do Not Fear
BOYD K. PACKER


The moral values upon which civilization itself must depend spiral downward at an ever-increasing pace. Nevertheless, I do not fear the future.

A few weeks ago our youngest son and his wife and family stopped to see us. The first one out of the car was our two-year-old grandson. He came running to me with his arms outstretched, shouting, “Gwampa! Gwampa! Gwampa!”
He hugged my legs, and I looked down at that smiling face and those big, innocent eyes and thought, “What kind of a world awaits him?”
For a moment I had that feeling of anxiety, that fear of the future that so many parents express to us. Everywhere we go fathers and mothers worry about the future of their children in this very troubled world.
But then a feeling of assurance came over me. My fear of the future faded.
That guiding, comforting Spirit, with which we in the Church are so familiar, brought to my remembrance what I already knew. The fear of the future was gone. That bright-eyed, little two-year-old can have a good life—a very good life—and so can his children and his grandchildren, even though they will live in a world where there is much of wickedness.
They will see many events transpire in the course of their lifetime. Some of these shall tax their courage and extend their faith. But if they seek prayerfully for help and guidance, they shall be given power over adverse things. Such trials shall not be permitted to stand in the way of their progress, but instead shall act as stepping-stones to greater knowledge.
As a grandfather and as one of the Twelve, I will give you some counsel, some caution, and a lot of encouragement. I could do this much better if the grandmother in our family, my wife of 57 years, were standing beside me. Mothers know much more about life than fathers do, but I will do the best I can.
We do not fear the future for ourselves or for our children. We live in dangerously troubled times. The values that steadied mankind in earlier times are being tossed away.
We must not ignore Moroni’s words when he saw our day and said, “Ye [must] awake to a sense of your awful situation” (Ether 8:24).
We cannot take lightly this warning from the Book of Mormon:
The Lord in his great infinite goodness doth bless and prosper those who put their trust in him … doing all things for the welfare and happiness of his people; yea, then is the time that they do harden their hearts, and do forget the Lord their God, and do trample under their feet the Holy One—yea, and this because of their ease, and their exceedingly great prosperity.
“And thus we see that except the Lord doth chasten his people with many afflictions, yea, except he doth visit them with death and with terror, and with famine and with all manner of pestilence, they will not remember him” (Hel. 12:1–3; emphasis added).
Have you noticed that word terror in that prophetic Book of Mormon warning?
The moral values upon which civilization itself must depend spiral downward at an ever-increasing pace. Nevertheless, I do not fear the future.
World War I ended only six years before I was born. When we were children, the effects of the war were everywhere present. World War II came only 15 years later. And dark clouds were already gathering.
We had the same anxious feelings that many of you do now. We wondered what the future held for us in an unsettled world.
When I was a boy, childhood diseases appeared regularly in every community. When someone had chicken pox or measles or mumps, the health officer would visit the home and place a quarantine sign on the porch or in the window to warn everyone to stay away. In a large family like ours, those diseases would visit by relay, one child getting it from another, so the sign might stay up for weeks.
We could not blockade ourselves inside our homes or stay hidden away to avoid those terrible contagions. We had to go to school, to employment, to church—to life!
Two of my sisters were stricken with very severe cases of measles. At first they seemed to recover. A few weeks later Mother glanced out of the window and saw Adele, the younger of the two, leaning against a swing. She was faint and weak with a fever. It was rheumatic fever! It came as a complication from measles. The other sister also had the fever.
There was little that could be done. In spite of all of the prayers of my parents, Adele died. She was eight years old.
While Nona, two years older, recovered, she had fragile health for most of her life.
When I was in the seventh grade, in a health class, the teacher read an article. A mother learned that the neighbor children had chicken pox. She faced the probability that her children would have it as well, perhaps one at a time. She determined to get it all over with at once.
So she sent her children to the neighbor’s to play with their children to let them be exposed, and then she would be done with it. Imagine her horror when the doctor finally came and announced that it was not chicken pox the children had; it was smallpox.
The best thing to do then and what we must do now is to avoid places where there is danger of physical or spiritual contagion.
We have little concern that our grandchildren will get the measles. They have been immunized and can move freely without fear of that.
While in much of the world measles has virtually been eradicated, it is still the leading cause of vaccine-preventable death in children.
From money generously donated by Latter-day Saints, the Church recently donated a million dollars to a cooperative effort to immunize the children of Africa against measles. For one dollar, one child can be protected.
Parents now are concerned about the moral and spiritual diseases. These can have terrible complications when standards and values are abandoned. We must all take protective measures.
With the proper serum, the physical body is protected against disease. We can also protect our children from moral and spiritual diseases.
The word inoculate has two parts: in—“to be within”—and oculate means “eye to see.”
When children are baptized and confirmed (see D&C 20:41, 43; D&C 33:15), we place an eye within them—the unspeakable gift of the Holy Ghost (see D&C 121:26). With the Restoration of the gospel came authority to confer this gift.
The Book of Mormon gives us the key:
“Angels speak by the power of the Holy Ghost; wherefore, they speak the words of Christ. … Feast upon the words of Christ; for behold, the words of Christ will tell you [and your children as well] all things what ye should do” (2 Ne. 32:3).

If you will accept it in your mind and cradle it in your feelings, a knowledge of the restored gospel and a testimony of Jesus Christ can spiritually immunize your children.
One thing is very clear: the safest place and the best protection against the moral and spiritual diseases is a stable home and family. This has always been true; it will be true forever. We must keep that foremost in our minds.
The scriptures speak of “the shield of faith wherewith,” the Lord said, “ye shall be able to quench all the fiery darts of the wicked” (D&C 27:17).
This shield of faith is best fabricated in a cottage industry. While the shield can be polished in classes in the Church and in activities, it is meant to be handcrafted in the home and fitted to each individual.
The Lord said, "Take upon you my whole atom or, that ye may be able to withstand the evil day, having done all, that ye may be able to stand" (D&C 27:15). 
Our young people in many ways are much stronger and better than we [are]. They and we should not be afraid of what is ahead.
Encourage our young people. They need not live in fear (see D&C 6:36). Fear is the opposite of faith.
While we cannot erase wickedness, we can produce young Latter-day Saints who, spiritually nourished, are immunized against evil influences.
As a grandfather who has lived a long time, I counsel you to have faith. Things have a way of working out. Stay close to the Church. Keep your children close to the Church.
In Alma’s day “the preaching of the word had a great tendency to lead the people to do that which was just—yea, it … had more powerful effect upon the minds of the people than the sword, or anything else, which had happened unto them—therefore Alma thought it was expedient that they should try the virtue of the word of God” (Alma 31:5).
True doctrine, understood, changes attitudes and behavior. The study of the doctrines of the gospel will improve behavior quicker than a study of behavior will improve behavior.
Find happiness in ordinary things, and keep your sense of humor.
Nona recovered from measles and rheumatic fever. She lived long enough to benefit from open-heart surgery and enjoyed years of much improved health. Others spoke of her newly acquired energy. She said, “I have a Cadillac engine in a Model T frame.”
Keep your sense of humor!
Do not be afraid to bring children into the world. We are under covenant to provide physical bodies so that spirits may enter mortality (see Gen. 1:28; Moses 2:28). Children are the future of the restored Church.
Put your homes in order. If Mother is working outside of the home, see if there are ways to change that, even a little. It may be very difficult to change at the present time. But analyze carefully and be prayerful (see D&C 9:8–9). Then expect to have inspiration, which is revelation (see D&C 8:2–3). Expect intervention from power from beyond the veil to help you move, in due time, to what is best for your family.
Alma called the plan of salvation “the great plan of happiness” (Alma 42:8; see also 2 Ne. 11:5; Alma 12:25; Alma 17:16; Alma 34:9; Alma 41:2; Alma 42:5, 11–13, 15, 31; Moses 6:62).
Each of us came into mortality to receive a mortal body and to be tested (see Abr. 3:24–26).
Life will not be free from challenges, some of them bitter and hard to bear. We may wish to be spared all the trials of life, but that would be contrary to the great plan of happiness, “for it must needs be, that there is an opposition in all things” (2 Ne. 2:11). This testing is the source of our strength.
As an innocent child, my sister Adele’s life was cruelly interrupted by disease and suffering. She and all the others so taken continue the work of the Lord beyond the veil. She will not be denied anything essential for her eternal progression.
We also lost an infant granddaughter. She was named Emma after my mother. We receive comfort from the scriptures.
“Little children need no repentance, neither baptism. …
“… Little children are alive in Christ” (Moro. 8:11–12).
Remember the Atonement of Christ. Do not despair or count as forever lost those who have fallen to the temptations of Satan. They will, after the debt is paid to “the uttermost farthing” (Matt. 5:26) and after the healing which attends complete repentance takes place, receive a salvation.
Follow the leaders who are called to preside over you, for the promise is given: “If my people will hearken unto my voice, and unto the voice of my servants whom I have appointed to lead my people, behold, verily I say unto you, they shall not be moved out of their place” (D&C 124:45).
The Church of Jesus Christ of Latter-day Saints will go forward “until it has filled the whole earth” (D&C 65:2) and the great Jehovah announces that His work is done (see History of the Church, 4:540). The Church is a safe harbor. We will be protected by justice and comforted by mercy (see Alma 34:15–16). No unhallowed hand can stay the progress of this work (see D&C 76:3).
We are not blind to the conditions in the world.
The Apostle Paul prophesied of “perilous times” in the last days (2 Tim. 3:1), and he warned, “We wrestle not against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this world, against spiritual wickedness in high places” (Eph. 6:12).
Isaiah promised, “In righteousness shalt thou be established: thou shalt be far from oppression; for thou shalt not fear: and from terror; for it shall not come near thee” (Isa. 54:14).
The Lord Himself encouraged, “Wherefore, be of good cheer, and do not fear, for I the Lord am with you, and will stand by you; and ye shall bear record of me, even Jesus Christ, that I am the Son of the living God, that I was, that I am, and that I am to come” (D&C 68:6). In the name of Jesus Christ, amen.

2004 April General Conference, Church of Jesus Christ of Latter-day Saints

Wednesday, August 28, 2013

Dinner Time


Baby Gatorade!


Wash it down with a good old fashioned Fat Injection. Mmmm...
Can't let him get too skinny. 

Just Stop Asking...

I am giving up on the question, "When?"

I like to think I'm a pretty quick learner. In this experience I am learning that if I ask when I will almost always be disappointed with the answer. And if I get an answer I like, I will most likely be disappointed with the actual followthrough. I don't think it is a matter of poor service or expectation. I think that on something so complex as the human heart they really don't know. Everything is a case by case guess. With his surgery my answer was hopefully today, but he might get bumped. It was the same with his heart meds. Then the diuretic, "he's not ready for it... He is doing great. He doesn't need it... He still has too much fluid we are going to administer it... Well, we had to dial it back. He seems to be loosing too much fluid right now..." 

Now we are awaiting chest closure. We were originally told to plan on Friday. When we came in on Monday morning we were told he was doing remarkably well and they stopped his heart meds. We were also told to anticipate chest closure on Tuesday. I have decided it is an indefinite "tomorrow." My guess, next Tuesday. I'm really trying to aim low here. I figure it will decrease my chance of disappointment. 

A Silent Cry

Through this Jake has been pretty drugged up. Even when he is awake with his eyes wide open. Because of this I've been able to tell myself it's ok, because at least he's not in pain. Until today. 

My heart broke as I saw him lying there. He looked up at me with pain in his face and began to cry in silence. His face turned red, his eyes and nose scrunched up, and he looked as if to be gasping for air. His poor legs kicked. His ventilator has sunk down in to his throat, and he was metabolizing the pain meds too quickly.

All I wanted to do was pick him up, rub his back, and give him a kiss. Instead I could only touch his forehead and tell him it would be ok. It felt like a lie. I knew it wasn't getting much better fast, but it was the only comfort I could offer him as he lay there helpless on the bed. 

Since then his breathing tube has been readjusted and his pain meds raised. Now he is sleeping. 


Waiting on Rounds

Still no news. Typically rounds are around 9:00/9:30, not today. It really our chance to talk to the surgical attending, the Dr, the nurse practitioner, head nurse, and everyone else involved in he treatment. We find out all of his statistics, test results, operating numbers, fluid output... Etc. oh yeah... Their Plans!!! 

Today however they are running on the later side. It's about 10:40 and there have been no signs of rounds for Jake. Things are rarely making any big changes, which at this point is a good thing. So, any positive changes or news is welcomed. 

He is no longer on a temperature watch. He also is awake A LOT more. I think this is the most alert he has ever been. It is so nice and comforting to see his little eyes looking back at us. I can see his spirit. I don't know if he can quite focus on us yet, but I like to think he can see Brad and I look back at him. 

Patience has never been my strong suit. Perhaps that is one of the reasons I am here. Add it to the list! Patience, humility, strength, faith, trust, righteousness, charity, selflessness... Thank goodness for the Holy Ghost. I am beginning to understand what it means to have Christ as my rock. Without his aid I don't want to think of where we could be. I can feel his strength lifting me up everyday. 

Tuesday, August 27, 2013

Great Friends

We have had so much reinforcement with our Little Man. Thank you all for being such good friends. 

Today especially we felt so supported! We got to visit with some really good friends who drove all the way out from Lodi to offer their love. 

The Robison's made the drive this morning. They were able to take us to lunch at one of the places here on the medical campus for lunch. 

Later, The Pittman's came out. You wouldn't believe the bag of goodies they were bearing. They know us all to well. Dr Pepper, Diet Coke, yummy snacks, magazines and games... Not to mention the randomness toiletries that I really am in need of! (It's almost like they went through something like this earlier this year) 


I don't know why we are as blessed as we are, but I feel so lucky! 

It was really nice having the visitors to both help the time pass and get my mind off the state of disappointment I was in after receiving the news about Jake's chest closure. 

We are still so fortunate. Reality is he is alive! That alone is more than we could have asked for last Thursday. We want this all to be over as soon as possible, but we care even more about his well being. Everyday he is here is a godsend. 

Bits of Hope


Little things can mean so much! 

Err on the Side of Caution

You know the saying, "Take 3 steps forward and one step back." 

I am blessed to say we are not quite stepping back. This is more like a side step. We were anxiously awaiting the chest closure, and prepared for it to happen today. I am sad to say we were a little premature in our excitement. Unfortunately, he is not quite ready. His swelling looks good. His fluid look good. His numbers look good. It is his heart. 

The heart is a muscle. As with any muscle it has "muscle memory." For the past 3 weeks his heart has been pumping the blood through his lungs. Now he is bigger and older. He has undergone major stress through the surgery. And to top it off we are expecting his heart to push blood through his entire body. 

Liken it to a bicep curl. For 3 weeks do 10 curls each day with a one pound weigh. Then for the next week go for a run followed by 50 reps with a 25lb. Weight. With out a spot that would be ridiculous. 

Having his chest open is like having a spot. The fact that it was even a consideration today is amazing. All we can do is be grateful for the progress he's made and hope for further progress tomorrow. 

"And if men come unto me I will show unto them their weakness. I give unto men weakness that they may be humble; and my grace is sufficient for all men that humble themselves before me; for if they humble themselves before me, and have faith in me, then will I make weak things become strong unto them." Ether 12:27 (Book of Mormon) 

I trust that all of this is in God's hands. Right now Jacob is weak. Too weak. But with the help of The Lord he will become strong. I can see his strength growing. I can see his fight. I wish it were all good news and he could be better. Growth is in the journey, as long and hard as it is. 

There will be another Echo in the morning and we will see then. 

A little more like home



 As you can see the Drs and Nurses are trying their best to make it a little more like home. when we got ere this morning they had made him this name tagfor his   bed. We brought his ducky in today too. Just a little something to snuggle that smells like home. 



 We are at day 2 Post-op. Jacob is so strong! The Dr have all said that his case is definitely a special one. 

Right now he is getting his Echo (aka heart ultrasound). As long as his Left Ventricle (the muscle that pumps blood to his body) is strong enough they have his scheduled for Chet closure TODAY!!! -That is 4 days earlier than planned- As always things could change and schedules are never really set, but he is doing a great job. Miracles are taking place. 

"He's a Parker, and Parker's do Hard Things!"- Ruby



The Light in Your Eyes


This was the perfect ending to a perfect day! 

We were told they would be lowering the dosage of paralytic drugs today and to possibly expect some twitching. When he first began to move, you can imagine our excitement. It was absolutely incredible to see any form of independent movements. 

He continued to do well through the rest of the day. So after sitting bed side almost all day we decided to take a break and get some dinner. 

When we got back to the hospital THIS is Brad was welcomed back. Even in the ride back to the hospital we were discussing his time line. Both of us anticipated to not see eyes for another week or so. WRONG!!! Later that night we got it again. We could see the jake we love so much coming back to life!!! 


"Life can take your dreams and turn them upside down
Friends will talk about you when you're not around
Reality can really cut you down to size
But don't ever lose that light in your eyes

Don't ever lose that light in your eyes

People make you promises they'll never keep
Soon you'll know why people say, talk is cheap
Life resembles one big compromise
But don't ever lose that light in your eyes

Don't ever lose that light in your eyes

Keep on shining, keep on smiling
Don't lose faith and don't lose heart
When you're crying, just keep trying
To remind yourself you're a shining star, yes you are


Somewhere down the line, you'll face the judgment day
When the angels look at you, what will you say?
They've got a way of knowing who qualifies
Just let 'em see that light in your eyes
Don't ever lose that light in your eyes

Keep on shining, keep on smiling
Don't lose faith and don't lose heart
When you're crying, just keep trying
To remind yourself you're a shining star, yes you are

Don't ever lose that light in your eyes
Don't ever lose that light in your eyes
Don't ever lose that light in your eyes

-Song By LeAnn Rimes

Monday, August 26, 2013

Together we can make it through!


Where do we go from here

So we have pretty much hit the 24 hr mark. Yippe. The Drs are really impressed with his progress! They have started lowering the dosage of paralytic drugs. They seem to think by tonight we will begin to see stitches and slight movements in his hands feet and face. I can't wait to see him move, even just a little. One medication down, 7 more to go! 

Once those kind of kick in and he is still maintaining they will begin to administer a Diarrhetic. He will begin to empty his fluids and his swelling should go down. 

As soon as they see his kidneys have good function and his swelling has decreased enough they anticipate they will close his chest! 
The Drs have been amazed with his recovery from surgery, "We see a lot of really bad cases here, but every now and then we get a kid like Jake. You can tell he wants to get better. We are really impressed with his progress since surgery. Looking at him last night I would have never have thought he would be doing so well. It is cases like this that make you realize how great of a surgeon Dr. Reddy really is. You can anticipate the chest closer in the next 24-48 hours as long as Jake continues the way he has." 

WHAT! Outstanding. We are still at a critical point, and things could turn or change at any moment. Good news none the less. We don't want to get our hopes up. They say there is no roller coaster like CVICU. We just hope our ride is the short boring kind. I know there will be ups, downs, and turns. I'm trying to anticipate Murphy's Law through all of this. So when they say 24-48 I still hear Friday. Hope for the best and expect the worst, right!? 

He is doing well! That is all I can ask for. 

Notes from a Friend

This is a note of encouragement we received from Jake's BFF Baby-E: 
(Thanks Sarah) 

"Cyndie your family has been heavy on our heart. It is almost all I think about. I think I check your blog every 15 minutes looking for an update. We are praying continually, multiple times a day. We are blessed to have faith in the creator of all things, including Jake. We love you all. 

John 14:27 Peace I leave with you; my peace I give unto you. Not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.

Baby-E says come on buddy, we have a lot of playing to do!!"

A Prayer for Jake

It is 6:30 am. We are just waking up to go sit at Jacob's bedside once again. We have not heard anything since we left the hospital around 11:00. In this case, that is a good thing! We will be heading in to listen to rounds this morning. 

Greg Blaser, a good friend on the Parker side passed along a scripture, via my mother in-law. It has been a source of hope for me, and really helped me get through with peace. 

3 Nephi 17:20-24

20 ... and he (Christ) said unto them: Blessed are ye because of your faith. And now behold, my joy is full.

21 And when he had said these words, he wept, and the multitude bare record of it, and he took their little children, one by one, and blessed them, and prayed unto the Father for them.

22 And when he had done this he wept again;

23 And he spake unto the multitude, and said unto them: Behold your little ones.

24 And as they looked to behold they cast their eyes towards heaven, and they saw the heavens open, and they saw angels descending out of heaven as it were in the midst of fire; and they came down and encircled those little ones about, and they were encircled about with fire; and the angels did minister unto them.
(The Book of Mormon)

I know Christ has a special place for my Little one. And God's hands are in this every minute! May the angels truly encircle him, minister unto him, and heal him through this. May Christ's hand of protection be upon him. I know Jacob has been chosen for this trial because of his strength to over come. It is through Christ that the power to heal is given. 

"Verily, verily, I say unto you, ye are little children, and ye have not as yet understood how great blessings the Father hath in his own hands and prepared for you; And ye cannot bear all things now; nevertheless, be of good cheer, for I will lead you along. The kingdom is yours and the blessings thereof are yours, and the riches of eternity are yours."  (D&C 78:17-18)

Perspective


It is amazing how quick your perspective can change. Things that I have always taken for granted in my child's growth and development I value so much. Never would I have thought that I would feel so happy to see my new baby completely paralyzed (temporarily) and sedated with his chest wide open. 

Yet here I am. This is the healthiest he has been his whole life! Just being alive with a hope of recovery is all I could ask for this morning. I miss his sweet spirit and I can't wait to see it return. (We willbe able  to take him out of sedation probably next Sunday or Monday). 

I know it is tough to see him now, and he will get worse before better. We expect quite a bit of swelling and bruising, especially in the next week, but I know he is strong enough to make it through! 

Right Now, we just hope to make it through the night without major complication. The surgeons have done their job. (So amazing what they are able to do!) 

This is Jake's turn at the wheel. Hopefully his heart will do what it is supposed to do. If it can respond well to the medication and begin to do the job on it's own we can continue to progress. This is a long slow process and all we can do is rely on faith that his heart will continue to pump and circulate his blood through his body. 

Never did I think we would have nothing more than the single desire to make it to morning. 12, 24, 48. Let's make it through the first 24! 

Sunday, August 25, 2013

Thank You

I want to take a minute to thank Terri Fairbanks and Terri Fairbanks Photography. Terri has been kind enough to really help me out in keeping everyone well informed through this blog! She is responsible for all the beautiful pictures of Pre-op Jake. I'm so great full she was able to capture his sweet spirit and remind us of the little man he is despite the state he is in now. She has also helped me put this blog together. Without her it would not be near as beautiful. 

I have had so much support and I am so thankful for all of you that have been ready to step in at the drop of a hat with out me even having to ask! 

Every prayer is appreciated! Every phone call, text, e-mail, "like", comment, and thought gives our family strength. If I haven't thanked you, I thank you now. If I haven't responded I thank you. I have read every message. I have enjoyed every act of encouragement extended. It is so much easier to have strength and be positive when every minute I am reminded of the the faith in God's healing powers, through your prayers, love, and support. 

A special thanks thus far to: 

The McDonald Family
Aunt Bekki
Bishop Gingery an his wife Candice
GinaHesseltine
Sarah and Cameron
The Bist Family
Nik Forester
The Hart Girls- Christy and Nichole 
Terri Fairbanks
Bifanos, Binghams, and Parkers 
Spellmans 
VanStienwicks
Wards
My Mom
Shelly Hall

If have not mentioned you, I apologize. I truly do appreciate everything you all have done, and continue to do. 





Surgery Complete!

He is here!!! We just saw him!!! 

They have to make the transfer and clean him up before we can be in there with him. Everything went well. His heart is still a little depressed, so he has an open chest, but it is beating on its own. Medication is helping out, but no machines. On to the next 48 hrs. This is really his most volatile time. We will be with him in the next 20 or so minutes. I can't wait to once again stand by his side! 

Waiting... ... ...

I don't know what is worse: finding out your baby has a major life threatening condition, or waiting 7 hrs. In the dark to hear if your baby is going to live!? Waiting, waiting, waiting... We should know anytime now. 

In good hands. Dr Mohan Reddy

Jake is in the hands of arguably the best pediatric Cariothorasic surgeons in the World. He is most known for his ground breaking surgery on a 26week gestation micro-premi in 2005. He has set the record for the smallest/youngest successful heart surgery on record. That surgery was the same procedure Jake is having today.

Here is a link to an article about him on CNN's Health page: 


Lucile Packard children's hospital Congenital Heart Disease

Lucile Packard is the children's hospital at Stanford. They are the ones treating Jake for his condition. In the attached link is their explanation of what is happening with Jake's heart. Specifically he has Complex Transposition of the Great Arteries (TGA) with an arterial septal defect and ventricle septal defect (ASD & VSD).

We are so lucky to have such a great hospital treating Jake. (Ranked top 10 in the country). They have been amazing. Everything, from the way we have been treated to the education we have receive while admitted. I came here knowing nothing about what was going. I feel confident they will take the best possible care of my lovely little boy.

http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/cardiac/chd.html

Lets get physical!

Surgery

This is what's about to happen:

He goes in for anesthesia. Once he is under they cut open his chest along the sternum line. Then they will cut the sternum bone to get to the heart.

Once in his heart is bypassed, and his body hooked up to a heart and lung machine to mimic the hearts actions.  Then the surgery begins.

They need to stop his heart, then they will sever the two main arteries from his heart. From there then switch their position and reattach them to where they should be. That is when then difficult stuff begins. The blood supply to the heart is provided by the coronary arteries (a bunch if little blood vessels surrounding the heart). All of these little vessels need to be reattached to the pulmonary artery for oxygen secretion.

Part 2 is to close the holes in his heart walls that separate his R and L sides. That will give him a complete 4 chamber heart. That is ready for blood flow and restart.

That's it right!? Kind of. He has a 3% chance of major complication. 40% chance of coming back with an open chest. Small chance he will have a pacemaker and or a machine to help his heart pump blood till it is strong enough to pump on its own. (It needs to be able to pump with enough pressure to circulate him entire body. I major issue because he is 3 weeks.)

Once the surgery is complete and he is signed out of OR and into CVICU (ped- cardiovascular ICU) he is stabilized. That is when we get so see him again.

We are updated every couple hours as to the progress of the surgery. As far as we know he has been successfully put under and surgery has begun. Now it is time to, as they say, hurry up and wait.


God be with you till we meet again!

We just walked Jake into surgery. It takes about 6-7 hours. We expect to see him again about 3:00-4:00 pm.
1. God be with you till we meet again;
By his counsels guide, uphold you;
With his sheep securely fold you.
God be with you till we meet again.
(Chorus)
Till we meet, till we meet,
Till we meet at Jesus' feet,
Till we meet, till we meet,
God be with you till we meet again.
2. God be with you till we meet again;
When life's perils thick confound you,
Put his arms unfailing round you.
God be with you till we meet again.
3. God be with you till we meet again;
Keep love's banner floating o'er you;
Smite death's threat'ning wave before you.
God be with you till we meet again.


It's not good bye.

Little Jakers,

How do we say good bye? You have received blessing telling us you will be healed. We have faith in the peace we've received thus far. You are so strong. You have lived miracles! You are so strong to have lived 3 weeks without a link form your body to your lungs. Please continue your strength. We need your spirit in our home. You are in the best place possible. You have dozens of people fasting for you today, who love you and want to hold you when you come home. Please come home to us. May the hands of our team be guided. May your heart have strength. You are loved! Its not goodbye, WE'LL SEE YOU LATER.

"God be with you till we meet again"

We love you,
Mom and Dad

Good News!!!!

Last night when we left the hospital we were told he was on the schedule to have his surgery this morning. Unfortunately anything can change at any time. They have to have an OR, anesthesiologist, full caridio surgical team, and a bed available for recovery. Plus, he has to be at the top of the list. Until he is in the OR anything can change.

We spent all night worried he would get bumped, but there is good news. We called in this morning and HE'S SPOT WAS CONFIRMED!!! It is still no guarantee, but it is a really good sign.

Surgery is scheduled for today at 9:00. We are just getting ready to go in and say good bye now. Please Pray!!!!

Stay strong buddy! Saturday, August 24

Now that most of our tests are done it is all about maintenance. We want his O2 and CO2 levels to stay stable. When we left the hospital last night his #s were really good.

They took out his head IV! It is good to see him without it. The ended up needing it simply because his veins ere so little and that was the only line they couldn't get. Now he has his Pic-line, and that's doing most of what they need. The good news is at this point there is no fluids around his brain, and no signs of infection in his blood stream. He is hooked up to an EEG machine to measure brain activity, and that will be studied be some one on the Nuro team to check for any brain damage that could have occurred during his drop in oxygen levels.

We are so proud of him! He is being really strong.