Wednesday, October 29, 2008


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