What a year!! That even might be an understatement. This year started out with me having gestational diabetes. I thought that would be the challenge of the year, silly me. In April my grandpa had a heartattack and had to have three stints put in and later another three. Then my dad was diagnosed with a incurable bone cancer. Which is now amazingly gone. He still has pain but no cancer. Miracle! Then on May 20th we found out about our sweet son. His heart diagnosis started out as tricuspid stenosis. After 36 hour labor Daxton Parker Cook was rushed into this world weighing 5 lbs 5 oz. We then found out it was pulmanary atresia-basically same thing. Then on May 27th, this day will go down as the worst day of my life, we found out that our son had a severe coronary anomally and would not live very long. The emotions and feelings of this day are what my nightmares consist of. After many prayers, blessings and putting our faith in our Savior we went ahead with the first reconstructive surgery to Daxtons heart. We brought him home June 20th and spent 10 wonderful days as a family. On June 30th Daxton suffered his first of two heart attacks. We rushed him to the hospital where we ended up staying for 3 months while we waited for a new heart for our son. He recieved this new heart on Sept 10th. There were many many prayers, fasting, faith and blessings through our time in the hospital. So many sacred, beautiful events occured. Our family was brought closer, our true friends were realized, new amazing people were brought into our lives that we never would have ever met. But most importantly our testimony of our Savior was strengthed beyond our imaginations.
On Oct 11th we lost a beloved Uncle. I miss him so very much. I miss his laugh! Then a new baby, my sister had her first baby after 3 long years of trying, Teagan Rose was born.
So yes I have never been so excited for a year to be over but looking back on the events, the miracles, the wonderful friends and family that we have. I can honestly say that with all of my heart I am grateful for the things we have gone through. Goodbye 2008!! We will never forget you.
Wednesday, December 31, 2008
Goodbye 2008!!!
Sunday, December 28, 2008
Saturday, December 27, 2008
I need something to read...
I am at a loss of what to read. I just got done with a really good series called the "Great and Terrible" I really enjoyed them. I also love love shannon hale. I have read all of hers. I love mystery but not gory, potty mouth mystery. So if anyone has any suggestions I would love it!
Wednesday, December 24, 2008
Merry Christmas Eve
I wanted to just let my beautiful wife, Hilary, know how much of a wonderful person she is. She is my strength and love. It seems that when people are with her, she brings the best out of everyone. Everybody that she meets feels at home and comfortable with her. I guess that is why I fell in love with her almost 10 years ago. Hilary is a wonderful mother and wife. I don't think that I would have been able to handle the things that our family has had to go through this year without her. I love her and wanted her to know this. -Ryan-
Thursday, December 18, 2008
Clinic
Today we had our usual Thursday clinic, we are now down to just once a week. We are actually switching to once every other week, Ya!! We are progessing in that department. Today at clinic everything looks good with Daxtons heart, which is awesome. But we are having some weight issues. He hasn't gained any weight in 3 months! So they are talking about a G-tube. A g-tube is where they surgically put in a little "button" that would go right to his stomach(sorry if that isn't a very good explanation, I am not sure how else to describe it). Then we would allow him to keep eating everything that he already does but when he is done eating add some more food into the g-tube to help him gain weight and to stretch out his stomach. This is a minor surgery, but surgery none the less. I am thinking of asking for a 2 for 1 deal, except I will take out the food after I eat it instead of putting more in, hey sounds good to me. I am praying super hard that he will all of a sudden have this huge jump in weight and that his appetite will grow. I know that a lot of heart babies have this and that it is no big deal. So i should just get over it. It just hurts my heart to think of having him go through another surgery, big or small. Pray for my little man that he will gain weight. This is Daxton today at clinic in his santa suit with Dr. Everett and Michelle-they are part of the transplant team, they are amazing, we feel really blessed to be in such good hands.
Oh, on the no sleep note, I totally give my kids melatonin every night. I started to feel a little guilty like I was drugging them, so I stopped but then decided bedtime was a much happier time with some assistance. My problem has not been getting them to sleep it has been getting them to stay in their beds. We even bought these really nice bunk beds because Mady said she would sleep really good with them, ya right. Every morning this is how our conversations would go....
Mady.."mom, I am going to sleep on the top bunk tonight."
Wednesday, December 17, 2008
Our christmas card!!
Mosiah 27:4
We share with you our testimony of our Savior.
Of our journey. We know that he lives and he LOVES
We love you and wish you a very
Merry Christmas!
Tuesday, December 9, 2008
Busy week....
A new baby!!
My little sister Lindsay and her husband Patrick welcomed their first baby. Teagan Rose. They had been trying for over three years to have a little one, so we feel truly blessed that she has finally arrived. It was really hard for me to not be there when she was born, Lindsay lives in Italy. But I am so happy for them and know that they will make great parents.
The Festival of Trees!!
We had so much fun at the festival. For me this was a very emotional experiance. I got teary eyed just walking in the doors. It is such a labor of love and an outward expression that seems to say please don't forget my loved ones. I love going, I want to do a tree next year.
The girls picked their favorite tree to take a picture in front of. Ellie picked a princess tree-she was so mesmerized by it she didn't want to leave, it was very cute. And Mady picked a GO UTES!! Tree-with absolutly no persuassion from me-I promise! They had a lot of fun, it is so nice to know that every penny is donated to primary childrens hospital.
The wonderful nanas came with us!
This was our annual Tonge family christmas party, the girls had a lot of fun playing with their cousins and then sitting on Santas lap, Mady wants a hello kitty boombox, makeup and crafts, and Ellie asked for candy. She cracks me up.
So after a week of fun of course we are going to get sick, Mady was still recovering from fifths disease and then she got a cold, then Ellie started vommitting all night long, yummy. I have been so worried that Daxton is going to get some, I have tried my darndest to keep the girls away from him but how do you keep his biggest admirers away? They seriously are in love with their brother it is so wonderful. I am praying that he doesn't get this sickness.
I just have to tell you how much I love my kids! They make me feel beautiful and wonderful when I am not feeling that way. Last night I was going out with my girlfriends from high school for our monthly get together. I had been trying on several outfits, just feeling gynourmous(large) when I walked into the room where Ellie was and she said in a very enthusiastic voice "oh mom, you are beautiful." Oh man, melt my heart. I know that will not last forever but i do enjoy it.
Sorry to ramble but I have so much on my mind, I am trying so hard to get all of my thoughts and feelings together to write our donor family. How do you put into words what they have done for me, my son and my family. How do you express the thankfulness that I have? How will they ever know the impact that their selfless decision has had on so many people? There truly are no earthly words to say the things I want to say to them. I want to get the letter out before christmas, but I honestly and truly do not have more than ten minutes all by myself. I will have to get a babysitter just so that I can write it.
Merry Christmas!!
Wednesday, December 3, 2008
Tis the season....
As for my little man Daxton, He is doing really well. We are now down to once a week appointments, instead of twice a week!! This is a big step for us. We are still working on gaining some weight, he doesn't want to get over 11 lbs. We had to take him to our Pediatrician yesterday to get his immunization and his flu shot. It was one of the saddest things. I have never heard him cry like that. Every time he got poked before he had his breathing tube in, so this was so so sad. But we made it through it.
Things are crazy good here. My Mady came home from school the other day covered with spots/hives all over her body, the doctor says that it is fifths virus. I have never heard of it but alas she got it. He said that Daxton should be ok, we just have to keep a careful eye out.
I hope that you all enjoy this Christmas Season! We wish you a very merry Christmas!!
Thursday, November 27, 2008
Thankful!!
Sunday, November 23, 2008
GO UTES!!
Game Time!!
This is my sweet Daddy before and then after the game, he was a great sport! Love you daddy!!
What a fun game!! It was an awesome game, I really do wish that there weren't so many turnovers so that it would have been a closer match, one turnover awesome, two ok, but 5! But Hey we will take it. Utah is now 12-0 baby!! BCS here we come!! Thank you Grandpa for letting us go to all the games with you, it really was an incredible season, one I will always remember.
Thank you so much Grandma and Mallory for watching Daxton so that Ryan and I could both go to the game. Love you!
Saturday, November 22, 2008
Monday, November 17, 2008
Steady goes it...
Things in the cook household are going well. Daxton continues to do amazingly well. He is drinking all of his food and his ng tube is still out. He didn't gain any weight today but he didn't lose any either. Hopefully if he continues to do well we will only have to go to clinic once a week instead of twice a week, that would be amazing. Daxton is starting to get stronger, he is rolling from side to side. He hates tummy time and he has no leg strength. I am going to have physical therapy come and help us out with those things.
This past week one of the nsl officers past away. The procession to his funeral came right in front our house. It was a beautiful tribute.
There were over one hundred police motorcylces and more than two hundred police cars.
It was a beautiful tribute to one of our public servants. I am glad that my kids were able to see that. I pray for the family that he left behind.
This is Mady reading to Daxton, she is just learning how to read and is very excited.
This is Daddy and Daxton picking grapes. Ryan has been Mr. Domestic. He has done two batches of canned grape juice and there is still more to come. What a man!
So today while we were at clinic I went to patients billing and asked them for a copy of all of Daxtons medical records. Funny joke. It took more than an hour for the poor girl to get them all printed off, I felt so bad, but I was glad that I went into the office because she told that it would have cost me 28 cents after the first ten. That would have cost me a lot. It is very interesting to read. I will have some reading material for many a day to come. Pretty impressive for a 5 month old. Yep those are all of his medical records. I also talked to billing and his bill for just the hospital stay this is not including doctors, I am still working on that number is $739,047.17!! That is a mouthful! Our insurance company loves us.
I am getting so excited to go to the UTAH/byu game. It should be a lot of fun. I will be sure to report on the game. Hope you all have a wonderful week and remember God loves ya!
Sunday, November 9, 2008
Downs and Ups!
This last week has been a week of ups and downs. We started out the week with Daxton having excess vomiting. He wouldn't keep anything down. I would feed him his bottle and then an hour later everything came up. I tried holding him the whole time and not lay him down but that didn't make any differance it still came up. He also had a lot of diarhea. I was covered in poop and puke, yuk! We have been through every outfit Daxton has, every towel and every t-shirt of mine. It was a fun couple of days. Wednesday night he cried and cried. He literally cried from one in the morning until seven am. He stopped crying when I put him in his car seat to take him to his doctors appointment. Ryan and I were both saying that they were going to admit him for sure. Well the appointment went well, Daxton was super happy and smiled and everyone(little stinker) All of his test results were excellent his echo looked really good. The consensus-Gas! He is now on medicine for acid-reflux. They also let me take out his feeding tube so we could see if that was causing some of the throw up issues. After taking that out he has only thrown up twice and it has been minimal amount. It is like night and day differance. He sleeps better, he eats better. He is just a happy boy! He is doing so well. Tomorrow marks our two month mark from transplant. My heart is full! I can't believe how far we have come. I feel so very grateful for our many wonderful blessings.
Thursday night I got to go to the Utah vs. TCU game! Oh man that was awesome!! It was so much fun. I am excited for the Utah/Byu game. Ryan and I get to go together on a date!! Yeh!!
We gave him rice cereal for the first time. He didn't seem to mind it, but we put that on pause until we get all of his stomach stuff taken care of. I will probably start again tomorrow. Ellie was such a little helper, she took lots of pictures for us. She loves her little brother.
We got our final bill from the hospital. Any guesses on how much three months in the intensive care, on a ventilator, and a heart transplant are? Give me your guesses and I will tell you later. This number is not including doctors, just the hospital. All I can say is thank heavens for insurance.
Monday, November 3, 2008
Love this!!!
http://www.youtube.com/watch?v=Dtxlv6Hoerw It made me cry(shocker).
Daxton is doing awesome! He now weighs 11 lbs 6 oz-fatty. He refuses to drink from a bottle so we have to gavage pretty much everything he eats. Which is fine for now. Today I went to walmart and spend $20 on differant kinds of nipples, to see which one he likes. Let the experimenting begin.
We had a fun Halloween-Mady decided last minute that she wanted to be a scary and nice witch, Ellie was little bo peep and Daxton was her little lamb. They were super cute. Nana Janet stayed home with Daxton so that we could take the kids trick or treating.
I am so excited for this month-I love thanksgiving-besides being my favorite foods,turkey, mashed potatoes, stuffing, cranberry sauce, yams, homemade rolls, yummy. I love reflecting on what I am truly grateful for. This year I have so much and we have been blessed so much that I am overwhelmed with emotion. It has been a long road. But so many wonderful things have come from it.
Don't forget to vote tomorrow!!
Wednesday, October 29, 2008
Sick?
Monday we had clinic, every clinic day he gets labs drawn and they check for a lot of things, including infection. On monday he had an elevated white blood count. So they were concerned so they did more labs so they could see what they were dealing with. So far nothing has grown out on the test, which is good but confusing. For the past two nights he has just been miserable, not sleeping well and waking up just very unhappy. So today I called cardiology and they sent me to my pediatrician. He did a lot of the same tests, his ears and throat look good, so it is not that, and all of the tests they did today look better than the ones on Monday. So basically we are all confused. I am thinking that it might be his feeding schedule, we are trying so hard to get him to where he needs to be feeding wise, but it is a slow process. Any way just wanted to give a little update on where we are at. We have clinic again tomorrow so we shall see.
I have a special request. There is a sweet little baby girl named Mia who is waiting so patiently for a new heart. It has been about three months of waiting. If you could all add her to your prayers I would be so grateful. Just pray that someone says "yes". I believe in the power of prayer and faith and know that with God's help nothing is impossible. Thank you so so much.
Sunday, October 26, 2008
Happy Birthday Ellie Belly!!
Things have been going really well. My sweet little Elizabeth had her 3rd birthday on Monday. She was so excited! It was so fun to focus on just her, being the middle child she doesn't get that a lot. She is so wonderful and so full of spirit. I just love her. Monday night we had a little celebration and we had the grandparents come over for some cake. It was pretty funny because everyone was wearing gowns and masks. It was a very funny site. Everyone was good sports.
Last Sunday we went on our first family outing with all of us. We went on a walk up in the mountains. It was a beautiful fall day, perfect weather. I felt so blessed to be able to have all of my children with me. Ryan laughed at me because I started crying, heh, you just have to relish every moment.
Daxton continues to do well. We are still progressing on the feeding. We try to give him about 40 cc's and he usually only drinks about 10 then we have to gavage the rest. I have a feeling this will be a long process, but that is ok, we can do it. He had a couple of his meds switched, he is no longer on Cellcept(anti-regection med) now he is on Imuran. It does the same thing but doesn't have the stomach side effects. He is also all the way off of his methadone. Ya!! This has been a 6 week taper. It is good to be off the narcotics.
Ryan finally started back at work, so it is just me and the kids. It has been crazy but oh so good. I love it. It is nice to be the mommy again. Ryan also just switched schedules at work, he now works 4/10's he has mon, thurs, sunday off. Which is so perfect for us because mon and thurs are Daxtons clinic days. It has definatly been an answer to pray. So things are going great we are loving our crazy life. I am trying to enjoy every moment. Thanks for checking in on us.
Saturday, October 18, 2008
We're Home!!
We were released yesterday from the hospital. We got home around 5 pm. I really like being home. It feels better this time, if that is possible. Daxton is doing really well, he is back to his cute smiling happy self. Our hurdle we are working on now is getting him to eat. He will drink about 10 cc's and then just cries, so then we have to gavage feed the rest. Gavage is where you put his formula in a syringe connected to his feeding tube and hold it up high so gravity will take it to his stomach. We will get there. Oh, I forgot to tell you that he is off of oxygen!! It is so awesome. He came off of it Wednesday and is doing really well, I am sure it is a lot easier to breath without all of that fluid on his lungs.
This has been one of the most emotionally draining weeks of my life, with Daxton back in the hospital and my Uncles passing. I have truly felt your prayers and felt strength from so many people. Thank you for your love for my family. I know that love will be returned to you. Thank you, Much love, Hilary
Thursday, October 16, 2008
In loving memory of Uncle Joe
Joe Tonge, our beloved Father, Son, Brother, Uncle and Friend returned to his Father in Heaven October 11, 2008. Joe was born to L. Glen and Betty Jo Christensen Tonge January 5, 1957. He married Carol Dee LaRue February 14, 1986, later divorced but remained best friends. Their children are Shareen Marie and Nicholas Joseph. He is a member of the Church of Jesus Christ of Latter Day Saints.
Joe was a very hard worker, meticulous to every detail. He had many occupations starting as a salesman selling “Tasty Donuts,” working on a dairy farm, gas station attendant, chef at several restaurants, carpet and floor installer, master computer network specialist, and insurance salesman. Joe attended schools in Davis County, Westminster College, Mountain West College and the University of Utah.
Joe lived on the edge! He was a hot dog skier, mountain biker, mountain climber and marathon runner – he loved challenging his nephews who couldn’t keep up with him. Joe loved roller blading with his son Nick, playing guitar with his daughter Shar and going to Utah football games with his father. Joe was always there for his family. He was a competitor and he liked to make everyone laugh.
Survived by daughter Shareen, son Nick, former wife Carol, parents, sisters Julie (Ray) Hilton, Marjorie (Dan) MacDonald, Matt (Cathy) Tonge, 13 nieces and nephews and 10 great nieces and nephews and friend Becky Pierce.
Funeral services will be held Thursday October 16, 2008 at 12:00 pm at McKay Ward (1623 South 500 East, Salt Lake City).A viewing will be held 6:00 to 8:00 pm Wednesday October 15, 2008 at Russon Brothers Mortuary 255 South 200 East, Salt Lake City, and Thursday prior to the service 10:45 to 11:45 . Interment at Bountiful City Cemetery.A fund has been established for his children at Wells Fargo Banks in the name of “Joe Tonge Memorial Fund.”
Wednesday, October 15, 2008
Floor again
We were sent to the floor at about one o'clock. He is doing a lot better. He smiling at all the nurses, he is such a little flirt. He still has the chest tube in but hopefully that will come out tomorrow. He is at full feeds right now. I am not sure what the plan for that is tomorrow. Besides that things with Daxton are going well.
My uncles viewing was tonight. This has been so very hard for me and my family. He was a wonderful Uncle. I am going to miss him so very much. Tomorrow is the funeral. My head hurts from crying. What a week! Please keep my family in your prayers and all the little heart babies. There truly are so many that are in need of prayers. Thank you so much. Much love, Hilary
Tuesday, October 14, 2008
No Rejection!!!
Holy moly, I can't believe it. I am just so happy and relieved. He is doing a lot better after having all of that drained. His breathing is better and his heartrate is down. So now we try and figure out what it is. They are assuming that it is feeding related. So we are now starting very slowly on feeds he has only 10 cc/ml an hour. And we will slowly work up to full feeds. They will be sending us up to the floor tomorrow. We are just so grateful that it is not rejection. Thank you all so very much for your prayers, I feel humbled that so many people love and care for my son and my little family. Thank you. Much love, Hilary
Monday, October 13, 2008
We're back...
Today we had a cardiology apt. They did an echo, xray and ekg. The results were that Daxton had fluid on his lungs, and a little around his heart. So they said that this could possibly mean rejection(scary). So they told us we were being admitted back to the intensive care. So we are now back into the picu. They put in a chest tube, that took about 2 hours becaus the fluid was actually under his lung so he had to go down to specials and get the chest tube put in. They drained 50 cc/ml initially and he is still draining more. He has been super ornery since last thursday when we started feeding him in his tummy so we attributed that to eating. But maybe it was because of this.
So the plan now is they are going to do a cath lab. This is were they go into an artery in his leg and go up to his heart. There they will take a few little pieces of his heart and they will test for rejection. So we should officially know tomorrow evening what the results are. If it is rejection they will then treat for the next three days with heavy dose of steroids. They are telling me that he will need to be intibated for his cath and then if it is rejection they will keep him intibated because he will be pretty miserable. I am so very nervous about having the breathing tube back in. It seems like we just got it out. I am also very nervous about the cath. That is where all the bad news started with Daxtons heart. I pray that this time it will not be bad news. Hopefully this is just a little tiny speedbump, and Daxton will cruise right over it. Please pray extra hard that it is not rejection and if it is that the treatment will go well. Much love, Hilary
Sunday, October 12, 2008
Daxton is doing great!
Hey guys. This is Ryan. Hilary and her family and is need of your help. Her uncle has passed away this weekend and they are having a tuff time. They need your prayers and thoughts to help sustain all of us through this time of trial. Thanks so much again for all of your support and love. Ryan-
Friday, October 10, 2008
One month
Today marks the one month anniversary of the gift of Daxtons new heart. My heart is overwhelmed with emotions at this time. We have been so blessed and their isn't a moment of my day that I am not grateful and humbled by this. This also marks a sad anniversary for this sweet family that gave us new life. To them I express my sincere heartfelt gratitude. Their will never be enough words to express to them everything that I feel.
I am so grateful for my Heavenly Father and Saviour who I know have been with me every single step of the way. I have felt their power and heard the whisperings and calmings of the spirit. Without these this would have been a much much harder and longer journey.
I am also so grateful to the many wonderful angels that have helped us along the way. all of the wonderful nurses, Mary O., Peggy, Lauren, Susan, Tracey, Caroline, Kelly, Angie, Julie, Kim, Shauna, Pamela, Kathy and so many many others. Also the paliative care group, they are amazing and I am so grateful that someone recommended them to us they have helped us in so many ways. I am so grateful to Joy for helping my girls make it through this also, she is a wonderful person.
I have been so priveladged to meet some of the neatest heart moms, Bryt, Angie, Holly, Jessica, Deanna, Shauntelle, etc, all of us in the sewing circle. God brought our hearts together to help lift the load for eachother. I want to give a special thank you to Shauntelle, she is my personal guardian angel. Whenever I needed to talk or I was having a hard day she was there. She laid the path for transplant moms, Thank you. I am grateful for Intermountain Healing Hearts. They have been amazing!! Mike, Rebecca, Carolyn, thank you so much for always thinking of us and keeping us in your prayers.
And mostly I am thankful to my family and friends for the love, prayers, food, faith, special fasts, etc. Thank you for helping us get through this. I want to let you all know of the amazing mom and mother-in-law that I have. They have been my rock, they have stayed at the hospital with me so I could get some sleep, they have taken over for me with my girls so that they could have some stablility, they have cleaned my house, done my laundry, brought me treats, cried with me. I love you both so much.
Last but never ever least my sweet husband. His true colors have shown. He has risen to every occasion. He has grown in every aspect, he has more faith, a stronger testimony in the Saviour, he is a better father and a better husband. He is amazing. Their isn't anyone else in the world I would rather have gone through this with than him. I love you my E. Boyfriend.
This has been an amazing journey, thank you for always being their with us. We are so excited for the next chapters.
Thursday, October 9, 2008
He passed!!
Ya for Daxton! He did so good, he drank it really well he was a little sloppy but hey he is a boy. So we were able to move his tube to ng(in his stomach instead of his intenstines). I just tried giving him a little bottle he took about 1/4 of an ounce and is keeping it down. This is going to be a super slow process. But he is on the best tasting and the formula that is easiest on your stomach so we are doing everything in our power to make it a success.
So my little man is balding. Last week I gave him a hair cut and then the very next day I started pulling out hair in chunks, it was the weirdest thing ever. So now he is completly bald everywhere except for his little fo-hawk. Dr. Everett said it isn't any of his meds so it is just that development stage. He is still the cutest little peanut.
Things are going great at home. Last week was super crazy, the girls were definatly testing their boundaries, but now that things are more consistant they seem to be doing better. We are so grateful to be home, it is wonderful. Thanks so much for your prayers!! Much love, Hilary
