Monday, June 28, 2010
Although we are home from the Ronald Mcdonald apartments we are still unable to return to our humble abode. For our home is under renovation to remove the mold from exterior walls, add a furnace, and make our home a safe place for our young baby to grow and learn.
We have had wonderful friends who have stepped in and headed up this project and we will be eternally grateful for their efforts in our behalf. We are also grateful to sister Smith for letting us stay in her basement which is like our own apartment. And yes Jineal we also enjoyed staying with you but felt we were imposing way too much on your wonderful family. Besides sister Smith really needs the extra company. We love you all and a forever indebted to you for your friendship and kind deeds that are done on a regular basis.
Today we came to Salt Lake City, Utah to do a biopsy on Masons heart. It is scheduled for tomorrow morning and is a routine procedure. We hope and pray all will go well. Thank you all for your prayers in our behalf.
Never go to sleep without trying to count your many blessings. I always start with 2 and go from there.
Sunday, May 23, 2010
Mason is doing so good. He is growing strong. He is also a happy little boy. We are thankful to have such a blessing in our lives. Thanks to his donor family for giving us these wonderful memories.
Sunday, April 18, 2010
We learned today through Face book that another Mason received a new heart during the Easter weekend and now his body is rejecting his heart. As soon as we found out we were praying for him. We pray that all goes well and that he will heal quickly. We were very fortunate to be blessed with such a quick recovery with our son. We feel so badly for this other family. We can only imagine what stress they are under. We will continue to pray for this little Mason until we hear otherwise in his behalf. We know and understand prayers work and do not hesitate when someone asks in their behalf. We had so many people praying for us. We could spend a year on our knees and never compensate for the prayers in our behalf.
We have some friends putting together a fundraiser in our behalf to help fix our house so that it is healthy for Masons return home. We are so grateful to all those involved. We will do everything in our ability to help repay the debt to all those that are extending their assets and abilities in our behalf. We feel a great debt to those who are so willing to help us. All that we can say is THANK YOU!!! We hope to extend a hand to others in need.
WHEN I BECAME A HEART MOTHER
ONE DAY MY WORLD CAME CRASHING DOWN,
I'LL NEVER BE THE SAME.
THEY TOLD ME THAT MY CHILD WAS SICK.
I THOUGHT, "AM I TO BLAME"?
I DON'T THINK I CAN HANDLE THIS.
I AM REALLY NOT THAT STRONG.
IT SEEMED MY HEART WAS BREAKING.
I HAVE LOVED HIM FOR SO LONG.
I WILL NOT GIVE UP ON THIS CHILD.
I WILL LISTEN TO YOUR ADVICE.
I WILL GIVE MY CHILD ANY CHANCE.
NO MATTER WHAT THE PRICE.
I WILL LEARN ALL THAT I NEED TO HELP MY CHILD THRIVE.
I'LL EVEN USE THAT FEEDING TUBE.
MY CHILD MUST SURVIVE!
WILL HE NEED A LOT OF THERAPY?
WILL HE GAIN THE NEEDED WEIGHT?
PLEASE GOD, HELP ME DO THIS.
I WILL ACCEPT OUR FATE.
WHEN THE MONITORS BEEP AT NIGHT,
IT SERVES AS MY REMINDER.
HOW MANY PARENTS WOULD LOVE THAT SOUND.
TOMORROW I WILL BE KINDER.
AS ANOTHER ANGEL EARNS HIS WINGS,
I RUN TO MY CHILD'S BED.
I WATCH HIM SLEEP FOR QUITE A WHILE.
I BEND DOWN AND KISS HIS HEAD.
I CRY FOR THE PARENTS WHOSE HEARTS HAVE BEEN BROKEN.
I LOOK TO YOU WONDERING WHY?
OH LORD, I JUST CAN'T KNOW YOUR WAYS....
NO MATTER HOW I TRY.
AND YET, I TRUST YOU HOLD HIS LIFE,
AND GUIDE US THROUGH EACH DAY.
MY MIND SAYS SAVOR EACH MOMENT HE'S HERE,
BUT MY HEART BEGS, "PLEASE LET HIM STAY"!
FROM PACING THE SURGICAL WAITING ROOM,
TO SITTING BY HIS BED.
FROM WISHING FOR A GOOD NIGHTS SLEEP,
TO LEARNING EVERY MED.
FROM WONDERING, "WILL HE BE ALRIGHT?",
TO WATCHING HIM REACH OUT HIS HANDS.
WITH EVERY SMILE MY HEART JUST MELTS,
DESPITE LIFE'S HARSH DEMANDS.
FOR ALL WHO SEE THAT FADED LINE.
I LOOK TO THEM AND SMILE.
YOU SEE MY CHILD IS LOVED SO MUCH.
I WOULD FACE ANY TRIAL.
THAT SCAR I TRACE WITH MY FINGER
(IT'S THE DOOR TO HIS BEAUTIFUL HEART).
GOD MUST HAVE KNOWN HOW MUCH I'D LOVE HIM
(JUST AS HE LOVED HIM FROM THE START).
A HEART MOM IS ALWAYS A HEART MOM.
NOW WISE BEYOND HER YEARS.
FOR THOSE WHO HAVE ANGELS IN HEAVEN,
OUR HEARTS SHARE IN ALL OF YOUR TEARS.
EVERY DAY I WILL TRY AND REMEMBER,
I WAS CHOSEN FOR HIM (AND NO OTHER).
I WILL ALWAYS EMBRACE THAT BEAUTIFUL DAY.......
WHEN I BECAME A "HEART MOTHER"
Monday, March 29, 2010
Wednesday, March 24, 2010
Friday, March 19, 2010
What's In A Name
Mason, your name was chosen with careful consideration and openness between your mother, father, and your Heavenly Father. We had talked many hours about what we should name you should you be a boy. The only name that sounded right for you was Mason Daniel Bartholomew. At the time of your birth we only new what your name would be, not what it would represent. Now I know why your name is what it is.
Mason means skilled laborer or sculptor of stone. From the time that you were born you were sculpting peoples testimonies. Teaching people to know and understand the foundation for which their faith rests upon. You were able to teach the principles of fasting and prayer to not only you parents but for many people whom your spirit had touched. You have been teaching your parents the importance of relying on your Father in Heaven. Asking for Blessings, and putting all faith in the Lords hands in your behalf. We pray that as you continue your journey in this life, that we as a family and as friends can put the tools in your soul to sculpt yours and the lives of people around from firm foundations of faith to everlasting temples of righteousness.
Daniel was chosen for your middle name, not just for you, but also for your father. This name is to help your father know and understand that you are following him in this life. It is ultimately your choice to follow Gods plan. But it is your fathers obligation to teach you what your heavenly father wants you to know.
Bartholomew is the final part of your name. This name has been handed down many generations, and will continue to be so till the end of time. You as well as I have and obligation to our forefathers to uphold this name in righteousness. To carry it on into the millennium with honor. I pray that you will take this name and cherish it as much as we cherish you.
Wednesday, March 17, 2010
Today we went to Walmart and bought a loaf of bread and some sandwiches and went to Liberty Park to feed the ducks. We were able to get the ducks to come just a couple of feet from us. Mason was so cute, when the ducks quacked Mason would do his grunt. It was so funny. We even got the seagulls to come and eat bread. The seagulls would try to catch the bread before it hit the ground. Some were pretty good at it. My dogs won't even try to catch anything with their mouth. When Mom was throwing bread Mason reached out and grabbed the slice of bread from her and pulled it apart putting some in his mouth. I wonder if this means he is ready for real food. A sign is a sign.
Tuesday, March 9, 2010
Janita was told that she has a cold virus and that antibiotics would not help her. She still has a mild fever and has been wearing a face mask 24 hours a day since Saturday. I hope she gets to feeling better soon. So while Janita was at the doctors getting her check up, Emily Bullock called to inform me that Mason now has a clot starting to form on one of his sutures. So now we will b giving in an injection to thin his blood and to break up the clot. We are a little scared for his health but were informed this isn't too uncommon. Mason did get to drop his Calcium Carbonate permanently. WOO-HOO!! Home health came to show us how to administer his new injection. She was very professional. She also made sure we felt confident in what we were doing. I hope things start to settle down. This up and down emotional roller coaster is getting old. I just want my boy healthy and safe. Today I feel like I am just overstressed with all that is going on. All the drugs, take one away, add another. When does it end. I hope it gets better.
Monday, March 8, 2010
Today we received a phone call from Emily Bullock that Mason can quit taking his lasik. We are so excited 1 down 13 more to go. Thanks for all who pray for us and keep us going strong.
Friday, March 5, 2010
GOING GOING GOING AND GONE!!!!!!
Yea it is finally gone it would have been gone when i got out of the hospital but we didn't have a prescription for them to come and pick it up so we had to wait to get a prescription but it is gone know and we are all so happy!!
Mason hated his Oxygen he was on it for about three months he would suck on it or put it up on his nose so we had to tape it to his face. It was a pain for us to untangle him from the hose carry the tank everywhere when we had to go so we are as happy as mason to see it go....
Today Has been a pretty good day mason woke up happy, and
ready to play!!! Mom and Dad was still real tired so mom moved
me over to there bed hoping to go back to sleep!! But I got them
up when i had a blow out all over there sheets! I have a way at
getting what I want, they both got up in a hurry! I never thought A kid could poop so much
these meds make it bad I poop and spit up all day the doc said the meds make me. I will change
meds in about 3 more weeks so it should get better, mom hopes. I
could play all day I am loving my new heart. I have so much
energy I squeal and talk and kick, and play all day!! My mommy
and Daddy love me so much!!! And I have to say I love them too!!!
Wednesday, March 3, 2010
Tuesday, March 2, 2010
Sunday, February 28, 2010
Its a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels say to Jesus "I don't want to leave, I like it here, and I will miss you." He reassures the scared little angel that everything will be okay, and that he is just going for a visit. He is still not swayed on this idea. So Jesus kneels down and says, "how about if you leave half your heart here with me and you take the other half with you, will that be okay?" The angel smile's and says, " I guess that will work." But the little angel is still scared. He asks "Will I still be okay with only half of my heart?" Jesus replies "Of course you will, I have other angels out there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your Mommy will be scared, so you will have to be strong, and when you feel weak just remember that I have the other half of your heart." " Enjoy your time with your family, play and laugh every day." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."
One of our new friends are Raychel and Cody up a PCMC. Raychel is 19 and waiting for a Heart transplant. We pray for them and hope she gets her heart soon. We hope that things that we have said have been helpful to get them through their journey. But sometimes just having a friend to talk to is helpful. At least for us. Good luck to them.
Thursday, February 25, 2010
We have been preparing for our discharge from the hospital TOMORROW!!! We are so excited for Masons speedy recovery. Six months left till we go all the way home to Idaho. We also got to go and watch the KSL Radiothon today, here at PCMC. What a great world we live in when so many people can come together for a great cause and make every miracle count. We are so impressed with the amount of dollars that came in. $81,860 from 4pm - 12am. Mason sure has left an impression on all the nurses here. They think he is way cute and they have never experienced a baby so willing to take medications. Mason, your parents are proud of you. We love you and pray that you will recover quickly, so you can return home with us. Congratulations for the quick recovery so far.
He still is sucking like crazy on his hands, and if we can see correctly, there may be another tooth on its way. Can anyone say steak and potatoes? He is awfully noisy when he starts sucking on his hands. We have brought up his teethers but for some odd reason his hands taste better. Dad don't like his hands in his mouth, cuz that where germs come from. but the nurses told him to get over it. Thanks! He even had a cookie today as you can tell he REALLY enjoyed that.
Wednesday, February 24, 2010
Monday, February 22, 2010
The last couple of days have been so much fun Mason is playing so much. He acts like a brand new kid!! He loves to sit up and play you would never believe he just had open heart surgery a week ago. Today was a little rough morning he had to have x-rays, labs, and a echo. But after getting all this done he was happy the nurse that did his echo gave him a soft blue fleece blanket, he loves it he enjoys soft blankets against his face. He is eating well and we hope we can get out of here without the g-tube. I think he can gain weight on his own. Mom read him Dewey There's A Cat in the Library! He loves it when mom reads to him, and she loves to read to him!!!! We had two beds and a recliner in our room but when we went to dinner we lost a recliner the nurse gave it to someone else because they were looking in our room thinking it was no fair. We our suppose to only have one bed but we got hooked up this time. So we lost a recliner but still have both beds so I won't complain, and will just be happy. We met a neat little family yesterday. There is a 19 year old girl that has been threw many heart surgeries in her life, and is now on the transplant list needing a heart. Please keep her and her family in your prayers. We had a good talk with her her aunt and her boyfriend and was asked today if we would go speak with her mother, and we said we would be happy to they are having a rough time. Thanks everyone for your continues prayers for Mason we know its your prayer's that is getting him as well as us threw this. We love you all!!!! This look is because dad moved my fingers from my mouth and nobody moves my fingers from my mouth!!! I love to suck my fingers what is wrong with my Daddy??
Saturday, February 20, 2010
Mason is doing well we got moved up to the third floor so he can have more gifts so we went and bought Mason some balloons and a hippo that sings a love song and a little alligator. He didn't quite know what to think at first but has come to really enjoy it, I think it was because mom dad and the nurse would sing to him. But I think the thing he likes the most is seeing his reflection in the heart shaped balloon. We had visitors that same day. Janitas' parents gave us a surprise visit they also came with Jeanna and Jeramiah. Jenn and Jer also made a visit late that night. Mason sure likes his uncle Jer, He can get him smiling and laughing almost as good as his MOMMY! LOL They bought him a little rattle and a teddy bear that he just adores. He just smiles and smiles. Mason seems to be a real happy boy anyways. Which makes taking care of him a lot easier. Whew what a blessing!!!
Friday, February 19, 2010
Here it is another day and Mason is doing wonderful. They removed his art line, two of three chest tubes, placed pacer wires in tubes, gave him all his medications, changed his diaper, changed bandages, gave him plenty to eat, and now he gets to be held by his mommy. What a cute pair. I think he is just as comfortable as she is. All this has been done and its only noon. We will be moving upstairs tomorrow. the reason they didn't move him today is because of the removal of the chest tubes they want to make sure he is going to handle everything okay. We are just fine with that. It is amazing how quickly he is recovering. If it was Dan he would still be laid up for six months after and still want waited on hand and foot. Way to go Mason, keep up the good work. We are all paying for you.
Thursday, February 18, 2010
It has been another day, and although Mason is healing well mom is having a hard time not being able to hold him. She is trying to endure although very painful for her. She is so wonderful for the hours she spends next to his bedside. It has become very difficult for me to work on my see-food diet. I believe I may have lost some weight here. It is still hard to believe that he has a new heart. But to look at his face only reassures me that it is in there. Mason is such a tough boy and is still continuing to eat well. He still sleeps a bit but when he is awake he is wide awake. I think sleep catches him by surprise cause all of the sudden he is out like a light.
We heard and interesting saying the other day "When life throws you curve balls, We just have to try to hit them out of the park" Well watch out Masons a heavy hitter. Good luck little man. Keep doing what your doing. We love you!!!
Wednesday, February 17, 2010
I swell with pride
I'm on my way
to see the great light of day
My master my keeper,
has held me in,
afraid to show the world within
the love he has for one so dear
Oh please let me be that grateful tear.
His eyes are red
I'm just right there
time to show the world how much he cares
Down I come upon his cheek,
leaving behind a tear stained streak,
but when I land upon the ground,
I am glad to know that I am free.
It isn't much
to be a tear,
but to be the one
to show no fear.
I am gone but not forgot,
that single tear that love begot.
Daniel Bartholomew 2/17/2010
Mason I love you. I want to hold you so tight even though it has only been a couple of nights, I long to hold you. It feel like it has been forever since I held you close. I was hoping today would be the day I could hold you in my arms, but instead another day I couldn't hold you in my arms. I miss you buddy oh so much you are moms best friend. I promise you will feel better. I would never let anyone hurt you if it wasn't for your own good. Boy I promise you will feel better. I love you oh so much. I hope tomorrow you will smile at me. I miss it oh so much.
Janita and Dan are back at the apartment. Hopefully we can get a good nights sleep. It will be hard with Mason so far away. A little over a mile but it is still to far. Today he and mommy spent a good deal of time together. He really loves to hold her finger. I call it the comfort hold. He is really content when he does this. We have one of our favorite nurses on. Her name is Judy the Candy Lady. Everybody loves when she works. But we find it very comforting to see that by her demeanor we can tell that she knows what she is doing. Janita received a letter from her visiting teacher today with the relief society newsletter. Our Salt Lake address was in the newsletter, asking to send letters of encouragement. I watch Masons mother struggle holding back tears of joy and tears of sorrow for her valiant prince. To watch him in agonizing pain at times before medicine intervenes. Knowing the only thing she can do is watch and wait for him to get comfortable again. She wants to be the mother the soothes her child with love not with medication. To hug him when he sad or in pain. To hold him close to her heart. And to let him know she only asks God for the best for him. I can only imagine what her heart must feel like. Janita, Soon you will get to be a mother to that child. Soon you will put him in your arms and hold him. Soon you will teach your son how to thank God for his life and many blessings given to him on this earth. As much as you teach him, he will teach you. He loves you and is only confused at this time. He is young and this too will soon pass. Love him today, Chase him tomorrow.
We woke up and came to PICU at 8am. we had the opportunity to meet with another heart mom this morning. I am amazed at how many children have CHD. I think these children are whats pushing the medical advances into leaps and bounds. What blessing these children are to all of us.
Mason was wide awake when we came to his room. We have to wear a mask around him and all he did was stare at us. They said he has been eating pretty good by mouth. He took his meds by mouth this morning too.
We have grown tremendously together as a family. We understand more fully how to rely on each other to get us through every day. We have a testimony of fasting and prayers.We know and have physical evidence of the miracles that can be performed. Our Heavenly Father loves us and has great desires for us. How grateful we are for all of our many blessings. We are also grateful for the MANY prayers in our behalf. We are grateful for our many friends and family wanting to have a desire and have been able to help us along the way. We are grateful for the many shoulders we have had when times were tough.
We want to express our feelings to the family who saved my sons life. We love you whomever you are. Your blessing to us will never go unrecognized. We pray that blessings will be poured upon your family during this time of grief. We apologize for your tragedy but your legacy will continue. What a great sacrifice you have made in our behalf. I pray that this experience does not hinder your spiritual growth. Again we love you and are grateful you said yes.
Tuesday, February 16, 2010
Masons ventilator was pulled out today around 4:30 pm. It was a little startling for the nurses and us for a second because when he gets mad he stops breathing. But it was nice to see him turn pink when he decided to breathe agian. Mom and Dad got good sleep last night and feel very refreshed for the day. We will be sleeping at the Ronald Mcdonald house tonight to try to get more rested. Mason is still pretty sedated but may get to eat tonight. Finally, poor kid I think is starving. They want him to gain wieght but starve him how convenient. It appears his overall recovery is going well. If he keeps doing this well we may get moved upstairs by thursday. That would be way cool. Right now its very crowded in the room we are in.
Sorry for the late update, by the time we could get back we had to have some sleep. It was a long couple of days for us. But we are very relieved to have a new heart. Dr. Kaza came and showed us Masons heart that was keeping my lil man alive. I cannot believe how sick Mason really was. We learned all about his heart and what kind of complications he was having. His little heart was badly diseased from the inside out. Was 2 times larger than a normal heart due to extensive swelling from continues over use. Dr. Kaza was astonished to see his little heart last as long as it did. His B-T shunt was supposed to only work for 4 months. We got 8 months to the day, and we feel extremely blessed. Mason is in PICU and is recovering wonderful. I was amazed to see him with so much color. All the blue was gone from his fingers and toes and face. He is Beautiful! We expected Mason to be fully sedated for a couple days but to our surprise as soon as they let us go in, two hours after surgery, how quickly he was opening his little eyes.
When they pulled Mason from the heart lung machine they said that the new heart picked right up. It was as if God turned on a switch. There were no problems or foreseeable issues that they were aware of. The first 12-24 hours are the most critical hours. But so far he is doing wonderful.
Here is a picture of Masons old heart. Feel free to double click on photo to enlarge.
Monday, February 15, 2010
This is the best yet longest day of our lives. They finally took Mason in for transplant at 6:00 am February 15, 2010. There are so many mixed emotions. We will be praying that all will go well. Mason has had a lot of people fasting and praying for him. I can't believe what a missionary he is in his early stages of life. The waiting is nerve racking and boring. Although it will all be worth while. I cannot express how much we love our little bear. He is so tough. We love you Mason. Good Luck!!
Sunday, February 14, 2010
We received the news at 2pm that we have a heart offer, from the nurse that was not suppose to say anything but could not hold her composure especially with us pushing her to tell us. (she was practically crying and by the way she acted we new something was up). She said to act excited when the Doctor came in and we did it wasn't hard at all to be excited when she came 30 min later. Instantly we started crying because we were so happy we was getting a heart for valentines. But at the same time our heart ached for the family that lost there sweet angel. Both Dan and I instantly started calling family. We were suppose to get test results at 4pm but never got them tell around 5:30 that they all came back okay. We are so excited to start this procedure it was suppose to start at 9:00 but they came and told us there will be a delay because they are trying to place the other organs before they take the child off life support. We have had my family down Mom and Dad, Jen, Jineal, Chris, Jeana, Jeramiah, Kylie. It has been helpful to have them to talk to to pass the time. Mason is so hungry he has not eaten since10am we have all been trying to play with him to take his mind off of it but I don't know how much longer he is going to last he is starving. He is so upset now but after he receives his heart I think he will be a whole new kid. We love Mason so much.It is now 10:45 pm only to receive the latest news that his surgery will be 5 am.
Saturday, February 13, 2010
Mason had his NG tube removed today and mom gave him a sponge bath. We had to get practice with it before we can go home. Mom decided to do it tonight. She did such a good job, and we know it was in the right position because all of the sudden we had stomach contents leaking on the bed, and all over moms shirt but none on masons face, well our nurse forgot to plug the other end of the tube. I guess we learned another valuable lessen. "Even Nurses Make Mistakes" Mason didn't want mommy after she inserted the tube, he reached for daddy, someday he will understand mom is just here to help, and would never just hurt him. It only took a few seconds for little bear to forgive mom. We love little Bear so much!!!!
It is the end of another day here in the hospital. Mason has done very well today. He is willing to eat more food from his bottle. His overnight feeding went very well. Good enough to bump it up again. Hopefully we don't throw this up, it's an awful lot of food for his itty bitty belly.
Mason also spent a long time awake and playful today. I think he might want to be a doctor someday. But you never know!!!
Friday, February 12, 2010
We talked about how to insert the NG Tube and decided to show off our knowledge. Mom went all the way. Dad only did 8 inches. Wow what a tear jerker!!! Mom put it in all the way twice!!
Dad decided after she pulled it out the first time we should of got a picture. So mom put it in again!! It isn't that bad you can feel the tip going threw your throat and then you cant feel it although it really is a tear jerker! The nurse was impressed and is now telling everyone, We just wanted to see what it was like for sweet little boy.
We have returned to Primary Childrens Hospital on Tuesday Feb 9, 2010. Due to excessiv vomiting and dehydration. We went to clinic the day before and addressed these issues with the DR. and was informed that if his condition worsens or continues within the next couple of days than he would need to be admitted. He did not do well overnight so the decision was to have him admitted. His first night we observed his eating patterns noticing a decline in intake and a little vomiting. Night two he was given an NG Tube and absolutely hated it. He was fed 50cc per hr. for 12hrs. he made it 6hrs and vomited. So after a review the Drs. decided to lower his intake to 30cc and review the next day. He handled this much better but acted very full. Day three, we dropped it to 20cc per hr. and he acted hungry upon waking. Day four, we will be giving him 30cc per hr for 12hrs. to see if he can handle it. He seems much happier and is getting more energy. This in turn gives him longer time to play with Mommy and Daddy, that we love.
My name is Mason Bartholomew, I was born in Preston Id. to two of the most wonderful parents in the world. I was seven years in the making before I came to their loving arms. I am glad they thought I was a KEEPER. I was born with pulmonary atresia and was Life flighted to Primary Children's Medical Center the day I was born. My parents had no idea I was to arrive with such complications. I was scheduled to have three operations to fix my heart, but I quickly developed pulmonary artery disease which made fixing my heart impossible. I have now been on the waiting list for a heart transplant since November 29, 2009. We have had a lot of bumps in the road but I believe I will stay strong and healthy for my parents as long as I can. You Know I Am Their ANGEL!!!