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KADEN

WELCOME TO KADEN'S STORY FROM THE BEGINNING --MAY HIS LIFE TOUCH YOURS AS IT HAS TOUCHED OURS!! AT THE BOTTOM OF EACH PAGE CLICK ON "OLDER POSTS" AND YOU WILL BE ABLE TO GO THROUGH THE WHOLE STORY OF OUR SWEET BABY!!

Hey everyone, we have decided to set up a blog for our family so we can keep eveyone informed on what is going on with Kaden. Many of you know, but for those of you who don't here is a quick overview. Kaden has a bilateral cleft lip and pallet. He has a very, very flat nose which is even difficult to see on ultrasound. His top two ventricles in his brain were the wrong shape and now are filling up with a very large amount of fluid. They think he also could be missing part of something called the corpus callosum, which is in the top of the brain, but we won't know that for sure until after he is born and has an MRI. At our 29 week ultrasound his head circumfrance was measuring at 35 weeks because of all the fluid in his venticles. He was supposed to have between 10 and 12 mm of fluid and had around 33 mm in each ventricle. They are guessing his head will just continue to grow until the fluid is drained. Right now his cleft is not even an issue because that can be fixed a few months after he is born. The doctor's are concerned because the fluid is pushing all of his soft brain tissue against his skull and could cause brain damage or difficulties breathing. The neurologist is saying that he has atypical hydrocephally, most babies with hydorcephally do not have this amount of fluid. Because of his head size, they are going to take him C-section at the U of U hospital somewhere in the last week of January and the first week of February, he will be right around 32 weeks. His body will be that of a 32 week baby, but his head potentially could be as large as a 40 weeker, but only at the top, and he is missing parts of his face. It's kind of an interesting picture to paint in your head. Right after he is born they will take he right to Primary Children's for an MRI for placement of a shunt to drain the fluid. If he is stable he will be in the NICU there for 6-8 weeks. Kaden does only have a 40% chance of surving right now. I have started steroid shots to hopefully increase his breathing capabilites when he is born. We really feel honored that God has chosen our family to send this special spirit and are praying that the Lord will help us be both willing and able to accept his will, whatever it may be. We will keep you all posted on the date of delivery and try to get picures up as soon as we can, but if will probably be a pretty crazy day.

These are pictures of the top of Kaden's brain. They picture on the left was taken at 21 weeks showing the wrong shape of the ventricles. The picture on the right was taken at 25 weeks. The black is the fluid that was in his ventricles. Where you can see on the right picure the grayish stuff is his brain, currently it looks eggshell thin and there is at least twice as much fluid there.

This is a picture of Kaden's cute face. The small bump in the middle of his face, just below his eyes is actually the nasal bone and not the soft tissue. His soft tissue is really hard to see and is very flat. You can also see his cleft lip very well. It is bilateral meaning there are two side missing. This picure makes it look like he only has one side missing, but trust us, there are two holes with a little piece of tissue in the middle.

Scheduled Delivery

Hey everyone, this profile picture was taken of Kaden on 1-29. The white mark next to his forehead is his hand. You can see how big his head is getting in this picture. His head is measuring at 40 weeks and his body is just over 31 weeks. They have scheduled a c-section at the U of U on February 15th. A bunch of different doctor's have discussed him, and they all feel taking him this early would be more dangerous than waiting. The neurologists can't even place a shunt in his head yet because his body is to small. They all feel that keeping him on the inside longer will give him a better chance of survival. I have to go in every week from now until he is born to have him measured, because they can't let his head get bigger than 42-43 weeks or it becomes to dangerous to deliver. So even though I am scheduled for the 15th, if his head grows to rapidly it will be sooner, or if it stops growing it could be later. We are so thankful to everyone for your support and prayers. I honestly think the reason we feel so much peace is because of everyone's prayers for him and us. We know that Kaden is very special, he must be to have chosen this and we also know that God will take care of him, whatever his life may bring. Thanks everyone and we will keep you informed on what happen's next week.

LATEST UPDATE

Hey everyone. Our appointment today (2/5/08) went well. Kaden's head grew .5 cm last week. It now is averaging 40.5 weeks. His little body measure a perfect 32 weeks and he weighs almost 5 pounds, though the doctor says about 1.5 pounds of that is extra fluid on his head. If we make it to the 15th he will be 34 weeks and a normal baby at that point is about 4 pounds. We had a little scare over the weekend with me so I am supposed to take it easy. My utereus measures 37 weeks and his head measures full term, so my body naturally could think it is time to have a baby. We are still hopeful that we can make it to February 15th for the scheduled c-section. If we can get his body to 34 weeks he has a much better chance of survival. Also babies born sooner than that have a higher risk of brain bleeds and cerebral palsey, which we really have no desire to add to our list of things. So our prayer is that the baby will wait until 34 weeks and we can make this as least stressful as possible, since it is already going to be a crazy day. The c-section is scheduled for 7:30 am, so hopefully we will be able to get something posted by that evening. Thanks again for all of your prayers and fasting in our behalf. We are touched daily by the spirit we feel from so many who love us. We are not sure if we are going to the doctor next week, as I have an appointment scheduled for Tuesday, but the doctor said even if his head is measuring 43 weeks on that day, they still would wait until Friday for the delivery. If we go we'll let you know how everything goes.

A REMINDER OF WHAT LIFE IS REALLY ABOUT

On Friday the 8th of February, Spencer and I had the opportunity to attend the sealing of my cousin Nathan Wilson to his beautiful wife Alison and their darling daughter Jane. I know Heavenly Father helped to plan this sealing at this time to comfort both Spencer and I. The sealing was absolutly wonderful and they were the true example of an eternal family. When they brought little Jane into the room, there were not many dry eyes. She was so perfect and was so attentive to everything that was going on around her. As I witnessed her being sealed to her parents and listened to the promises made to both Nathan and Alison and also to the promises given to Jane, I knew without a doubt that Kaden is ours FOREVER, no matter what happens and that someday he will be restored to his proper health and will probably be the one leading our family in the next life. I am so thankful for the temple and for the sealing I have with Spencer and our children. I am also thankful for a gracious God, who knows our needs and knew this experience was exactly what we needed the week before this little baby is going to be brought into this mortal life. May we all remember the little things (and big things) God does for us everyday!!

HERE COMES BABY KADEN!!!

This is going to be our last post before Kaden is born. We are scheduled for a c-section at the U at 7:30 am tomarrow, 2/15. We are so thankful for everyone's love and prayers in our behalf. I am getting very nervous and a little afraid as there are going to be so many unknowns with the day. I know that Heavenly Father has planned all of this and I know that Kaden is going to be loved. I want to remind everyone, Kaden is being taken early because of the fluid on his head, it is very dangerous and life threatening. His head will be large, but we must not forget that he has a very large cleft lip and pallet. Ultimately his cleft will be much harder to look at. He also has a very, very flat nose and that may difficult as well. We love this little guy with all of our hearts, and know that all of you are going to fall in love with him as well. Thanks for everything!!

Here is our Little Buddy

Big Moment of the Day

After getting up at 5:30 in the morning the kids were able to see Kaden at about 4:00pm. He was sent over to Primary Childrens Hospital (connected to the U of U Hospital by Tunnel) for a CT scan of his head. The Prelimanay results of the test are not very promising. In addition to the enlarged ventricles, he may also have a complete brain defect in which the bumps on the brain appear to be smooth. The outer part of the brain is what controls our ability to give us personality, move, communicate etc. Without it we are Vegatables. We are awaiting an MRI to get better detail of the brain. Having the kids see their brother helped to give us a little closure in the event that he passes. All those who "need" to see him have now done so. All others who will get to see him is a pure bonus. We feel so blessed.

KADEN

Here is Mommy with Kaden

Kaden spent the first four hours under a Ventilator Hood

He Really does have a small piece of lip under his nose.

Getting shots did not make him very happy.

My little Guy

Yes he does have a big head. It isn't huge but it is big

After a few hours of difficult breathing they put in a breathing tube.

You better believe that we are proud of our little guy

Mommy can't get enough of him.

With sedatives he is very peaseful.

With all the tubes and such sometimes we get the best view we can.

I'm the most proud papa that is in the NICU.

Precious Moments

Call it what you want but this is Precious

Kaden Mathew Mack was born at 8:00am on 2-15-2008. Valentines Day came a little late for us. He was taken by C-Section by a great team at the University of Utah Medical Center. Our doctors wanted us to deliver there because of the close proximity to Primary Childrens Hospital. They are connected by a tunnel. When he was born he was immedately taken the the NICU and cleaned an evaluated. After Jeanine was back to her room, I went to be with Kaden. He has a good sized head, but it is not quite as big as we had expected. He also has an extremely flat face. His cleft is very large and includes most of the upper lip, most of the palate of the mouth, and all of the supporting structure of his nose. His head swells over his eyes and his forehead is very flat. As you look through the pictures you will be able to see what I mean. For the first several hours he was placed under a hood that provided oxygen to him. His breathing was labored and eventually he needed to be stablized with a breathing tube. Everything has since pretty much settled down but occasionally needes to be pepped with a little sugar or saline or oxygen. In the late afternoon we were able to let our Kids see their brother. They had been up since 5:30 in the morning in hopes that they would get to see him. They very patienly waited. They were so cute that there were very few dry eyes. It may be the only time that our little ones will all be together in this life and it was very moving to be able to at least have one little picture with all of us together. The reason for the visit was a transport to Primary to get a CT done to see what is going on with his head. I almost forgot. One thing that is present that is of major concer is Kadens eyes. The drs have been unable to see any. There is concern that he may not have any eyes or that if they are there that they will not be functional. The CT scan started too high on the head to see the eyes, but revealed some other disturbing news. Kadens brain is not bumpy like a normal brain. His is smooth. This could mean that the midline defects that we know about may be much more extensive. He is having trouble regulating the chemicals in his blood. Babys with this type of condition cannot lead any sort of life. Even if the little body manages to breath etc, he will be unable to communicate, move voluntarily, have personality etc. Usually these babies don't live very long. We are awaiting an MRI to confirm and define the problems that exist with his brain. Late today, 2-16, we got a bed and transfered Kaden to Primary Childrens Hospital. The specialty there is already beginning to show. In addition to MRI, they are going to re-check his chromosomes and genes. They want to be sure that he doesn't have Trisome 13 or 18. They will also have a genetic team examine him to see if there is something that can be attached to Kaden's condition. One term that has been thrown to us apprehensively is Lissenscphely. We are not going to look into it unless MRI indicated that is what he has. At this point. we are soking in every moment that we have with Kaden. Despite his deformities, we can' t keep our hands off of him. To us he is the most beautiful kid in the NICU. We love him sooo Much. There are not words to describe the feelings that go through when you know that your little one will probably not be here long. Jeanine and I have some tough decisions to make in the coming days and weeks, but we are at peace that Kaden has completed his mission on this earth. His sole purpose was to come and recieve his body and bless ALL of our LlVES. Very few people who associate with us haven't in some way been touched. You will never know how much it means to us to have so many people praying for us. Thank you all. We will never forget this time in our lives. We love you all.

OUR PRECIOUS LITTLE KADEN

Today we got the results of Kaden's MRI. The doctor first explained things to me and then I told Jeanine. Many of our family were there as we were going to bless Kaden so the doctor took all of us into a room and explained the whole situation to everyone. It was very moving to see the director of the NICU cry as he explained to us what was wrong with Kaden. He truly has a love for these little spirits he works with. I will start at the top and work down. Kaden's Hydrocephalus was not caused by an excess of fluid, or a blocked passage from drainage. It developed because his brain did not fully develop and therefore left a large void that filled with fluid. Draining the fluid will do nothing to improve his condition. He does have what is called Lissencephaly (Smooth Brain). This will result in his inability to move, communicate, think etc. The dammage is widespread and involves some of the other important parts of the brain such as the Pituitary Gland which is the control center for the essential functions of the body. His brain stem appears to be intact which is why he has relatively stable breathing and a stable heart rate. Kaden's little right eye did not form. His left eye is very tiny and non-functional. His optic nerve didn't form so even if he had eyes he would be blind. All of these things combined with the cleft give him no chance of having a normal life on this earth. He is still with us in large part because of the life support systems that are aiding him. If the life support systems for some reason were to fail, he to would fail. We have been told that we are incharge as to when to allow our precious little one to return to his Heavenly Home. Once the support has been taken, we will be allowed to have our family with him in a hospice setting in the NICU. After being taken off supports he could last minutes or days, we really have no idea how long. If he stabalizes on his own, we will be allowed to bring him home to pass away in the comfort of our home. If not we will let him pass in the hospital. Once we decide to remove life support, no further intervention other than eating will be given since this will only prolong the inevitable. Tonight we blessed Kaden. This is similar to Christening in other religions. In the blessing given to him, I told him that we were very greatful to have had him in our lives and that when the time is right he may return to our Heavenly Father. Needless to say it was very emotional. Thank you all for the "Cloud of Prayers" that you have allowed us to ride for the last little while. I know that is why we have been able to cope with all that has happened. If anyone feels that they need to come and see Kaden please do so. Remember that my wife or I must be with any visitors and anyone under 18 will not be admitted. We think that we may only have 2 or 3 days left to be with him. Please call prior to coming. When we take him off of life support we ask that you allow us to have that special time with our children and our parents. We know that all of you could or should be there, but we feel that we need this time to be an earthly family.

Thanks Love Spencer and Jeanine and Kids.

We will post more pictures as soon as we can

A LITTLE PIECE OF HEAVEN

This is Jeanine writing this time. I was able to get to a computer and read all of the amazing comments from everyone. I am so touched by the compassion and love everyone has for us. Through reading your words, I am strengthened a little more and am able to cry more because of joy than sorrow. Spencer is going to post pictures today, we promise. It is a little difficult to do it from the hospital, but check for pictures by tonight. Kaden is doing well today. He has started tube feedings. At first they went well, but are not going as well now, though they will continue to try. The director of the NICU talked to us again today. His name is Dr. Null. He is an amazing man. Everytime I see him he gives me a big hug. When he talks to us about Kaden, he gets emotional right along with us because he to loves Kaden and can feel his spirit. The nurse practioner who is over him spends her extra time next to his bed holding his hand and stroking his head. He is truely touching many lives. Dr. Null told us today that he thinks we will be able to take Kaden home for a little while before he passes away. He feels he is pretty stong and might make it at home for a little while. We originally were going to take him off supports Thursday or Friday, but now are going to wait until Dr. Null feels is the best time. It could still be as early as Thursday, but could also be a few days after that. They just need him to be tolerating his feeds before we can take him. There is still a good chance he will pass away in the NICU and we are prepared for that, but wouldn't it be great if we could take him home and let our kids be with him for a just few days. I am touched and strengthed every minute by everyone. Kaden is so beautiful and it hurts so hard that soon all of this has to end, but he will be a great guardian and leader to our family. Thank you for all of your faith, it helps when everyone feels and believes as we do that we will get to munch on this little man again. We love you all!!!

Some of the Sweetness

So these feet may never do any "walkin", but I bet that they have "Walked all over you"





I do believe that this proves he is an angle. Who else do you know that has powerful light follow them wherever they go!!

Little Alien Glasses

I am pretty sure that some say little ones like me look like little aliens, but really, isn't this going a bit too far??? Once the MRI indicated that I couldn't get any more blind than I already am, they decided to let me look Human again.

Flying Not So High

Truely this is the way to travel. Nice little bed with plenty of air, 2 flight attendents, and plenty of sleep meds. The best part is that the flight only takes about 10 minutes, and there are no delays, or layovers. You may disagree that this is flying, but I got the T-shirt!!

Bath time

My little face

Here are a couple of good views of Kaden Cleft. You will notice that he really is missing all of the bone and lip on the top of his mouth. I think that these pictures also give a good sence of where all of his features are. His nose is very discernable. You can see the buds on the side where his little lip began but failed to continue to grow. It is a little disturbing at first, but the more we are with him the more "normal" it is for us. I don't know that I would want him any other way. The picture with the hat is how he usually is when we take him out of bed and hold him. He stays good and warm in mommy and daddy's arms.

THE BEST FRIENDS A BOY COULD HAVE

Today Abbie, carter and justin came to sibling day at the Hospital. The Child Life Specialists help to teach the kids about what their brother is going through. It was so good. As you can see even our shy little Abbie was proud to show off her little brother to another father. They each made a special little book to remember Kaden in. They also got a little doll that they "hooked up" to little wires just like Kaden. They look forward to spending whatever time they can get holding and kissing their little brother.

Keeping Serious Things Light

I hope that you will forgive some of the light comments that I make with the pictures that follow. I believe very much that having a little fun does wonders for the heart and sole. We love our little Kaden more that anyone will ever know, but being able to laugh and remember the good times will help us through the rough ones. We must not forget to celebrate this life. There is plenty of sorrow to go around, but we should not be dwelling on that. I hope that you enjoy the lighter side of Life.

Spencer

Spencer posted pictures last night and I looked at them this morning. I cried the whole way thorough, what a great husband I have. We want everyone to know that if you feel like you want or need to come and see Kaden you are welcome, welcome to come. Yesterday my mother-in-law told me thank you for letting us be a part of this. I said, don't thank me, thank Kaden. I really feel like he is here to touch as many people as he can and if you feel like you need to come and see him, please do so. We will be at the hospital from 8:00 am-7:00pm each day for sure. Wednesday or Thursday would be the best days, as we might be taking him off supports on Friday. If you need to come and see him after 7:00pm just let us know and we would love to stay. You cannot see him from 6:30-7:30pm as that is nurse shift change. You have to have either Spencer or I with you and no one under the age of 18 is allowed in the NICU. Also, I know you all understand this, but there are many sick babies there, so even if you have a sniffle, please check our blog as often as you can and love him that way. Everyone's comments are amazing and keep us going. I wish we could write a response to each of you, but we can't so please know we love you all and appreiciate everything you are doing for us. May God bless you all!!! These are our cell phone numbers. We cannot answer in the NICU so leave us message and we will call you right back. Spencer 367-5786, Jeanine 885-7576

A LITTLE PIECE OF HEAVEN

We had a great day with Kaden on Wednesday. We have decided to take him off of his supports on Friday. I am hanging in there, but it is getting harder and I am crying a little more at the thought of not being able to see him and hold him anymore in this life. The NICU has made an exception for our children. Thursday they are going to move Kaden to a room all by himself without other NICU patients. There they are going to allow Abbie, Carter and Justin to come in and see him and touch him. I am so thankful for this tender mercy, as we don't know that he will make it on Friday to come home at all. Tonight we had a major scare with him. He needed to be moved and in the process his breathing tube came out. The nurse was calling and getting the doctor and respitory team in there as quick as she could to get another tube back in. They had to bag him so that he was getting enough air because his oxygen level fell very quickly. I was not ready for this and was scared we were going to loose him right there. I was crying at the thought of it all being over right then, so close to him getting to see his siblings. They were able to get his tube back in and he stabalized and seemed to be fine when we left to go home, though it tore at our hearts for both Spencer and I to leave him. Though the experience was hard, I wonder if the Lord gave us this experience to prepare us for Friday. It is important to us to spend quality time with him in his last few moments. Even if it is from the hosptial. We would love to bring him home to pass, but don't know if that is really an option at this point. His spirit is so strong, everyone who comes by him can't deny that. He is really a little piece of heaven right among us.

TOGETHER AT LAST

Today we were all together for the first time.

It was wonderful for the kids to see their brother in a more personal manner. They each got to hold and touch him for the first time. It was very sweat. We were greatful for the family members that were able to come and see him as well. We are going to soon say good-bye to our little Kaden. We feel that it is time to let him begin his return to our Heavenly Father. Our family will be together tomorrow in the early afternoon to remove his life support, and get a final Professional Family Photo. This experience has changed our lives more than anyone will know. We are greatful for all of the love and support that everyone has given us in the last weeks. We love you all and are greatful that so many of you were able to feel of our Kaden's powerful spirit. We will let you all know when he passes and what funeral arrangements will be made. Thank you all again.

Spencer