Wednesday, December 30, 2009

Christmas Miracles!!!!

Although we do not know what the future is, we cannot go with out counting our blessings. We have been beyond blessed this season. We so Thankful for all those who have blessed our lives and helped us out this year. Those who were anonymous and those we know, we truly are Grateful and want you to know how much we love you. We spent a lot of time up at the hospital this month, so it took a huge burden of the holidays off us.

Looking back, we were in either in the hospital or up there for appointments or procedures more than we were home. On Dec. 22, we took Ellie to the emergency room because she had passed out for a third time in less than twenty four hours. And Emily said if she does it again to bring her in. For all you heart moms or others, is this common among these heart kids or is this something special to Ellie? Either way, it scares us to death. So they decided to put the Holter monitor on her and for two days, nothing. So it came time to take it off and I put her in the tub and she began to fall back, so I grabbed her arm and pulled her up before she went in the water. This seemed to scare her and then, it happened. Not more than five minutes having that thing off and she cried, went blue, I pulled her out of the tub, laid her on the floor and she passed out. UGhhhh!!!! The doctors can't seem to figure this out either. I just want to make sure it is not damaging her heart more. They said some kids just do this, but I worry about her heart.

Anyway, we also had her visits with Dr. Lemons and Dr. Park about the tumor in her neck. They are going to repeat the MRI in eight weeks to see if the tumor is getting larger or not. This time they said she can not be sick for several weeks before. They just aren't sure if these new lesions are from her illness that she had just prior or not. Cardiology will want them to be more definitive on their course of treatment if the next echo shows any signs of worsening heart failure. Ellie is continuing to do well. She is fighting her feedings ever since her last hospital stay but she seems to eat more each day. She does have the occasional barfs, she will do this for a few days and then seem to be over it. But this is always a scary sign for heart babies so we feel much better when things seem to go better.

As for 2010, we are meeting this next year with much anticipation and hope for the next year. We are not sure what next year will bring but we know that with the friends and families that we have, we can get through it. Even all the strangers that have reached out to us have been amazing. We love you guys!!! Thanks for all the Miracles!!!!

We are having her next echo on Jan. 6, so we will keep you posted. We are hoping to get more answers but everything with Ellie is hurry up and wait. So we shall see.

Friday, December 11, 2009

Happy Birthday Ellie!!! (And a roller coaster of emotions)

Happy Birthday Ellie!!!
This week has been a flood of emotions. I cannot believe all that has happened in this last year. It has been the greatest and worst times of our life. But we are so grateful to have such a beautiful, strong and blessed child in our lives. She has taught us so much in this past year. We have learned so many life lessons and met so many new and caring people that has helped us and had some wonderful blessings from those that love us and care about our family. What a blessing it has been to know the people we know!!!


The results did not quite go like we had planned. Afterward, Dr. E came and told us that she is seeing no increase in function. In fact, there may be a slight decrease. So the plan was that night to proceed with the cath lab and check her pressures to see if she needs to be listed right away, or if we can wait longer. Then the next morning she called us to say that she likes to review these cases that eat at her. And even though there is a decrease in function. Her left ventricle is showing a slight decrease in size from her August echo to her Oct. echo. So now we are going to hold off on the cath lab until she sees her for another echo. So at this point, we were seeing a glimmer of hope. Then we got a call from her tumor doctor. He thinks the tumor is the same size but another doctor feels that it's more prominent or slightly larger. They also are seeing two new lesions on some lymph nodes in her neck. They are not sure if this is from the tumor, or if it's from her recent virus that she had. So this means more tests for tumor. As you can tell, this has been a roller coaster of emotions for us. I was just letting it sink in that if she needs a new heart, than maybe it was better for her to have this chance at life. We are just grateful for her beautiful life and the life she brings to our family. Please continue to pray for in the coming weeks and months. She is so special to us and we continue to see blessings from these special prayers.


Ellie- we have been so blessed to have you in our lives. I have cherished every day and have learned to remember the small things. There were some days that we wondered if you would reach your first birthday, but your strength and resilience has brought you here. You are so loved by those around you and your sisters, all of them care and love you so deeply. We have met so many kind and caring people because of you and the grace of humanity has shown itself over and over. I love to go to clinic and have so many people say "hi, Ellie" and inquire about your well being. We love you Ellie, and may Heavenly Father give you the strength to be with us for a long time.
Love, Mom and Dad.



Tuesday, December 8, 2009

Tomorrow's the big day!!!

The day I dreaded and looked forward to is finally here. Ellie has her MRI tomorrow for her tumor and her heart. Please keep her in your prayers tonight and tomorrow. We are hoping that we see improvement on both. Plus, Ellie in the past has liked to keep the docs and nurses on their toes and let them know that nothing is routine. She coded during one of them so this makes us really nervous. The good thing is that they actually have changed some things after this incident to make it a little safer for these kiddos. It still is never easy to have her put under.

We want to thank those from the bottom of our hearts who have been so supportive to our family during these difficult times. Sometimes we know who you are and sometimes you do it anonymously, but regardless, we love you and are so grateful to know such wonderful people. I read on another blog that these are the worst and the best times of their life and I know exactly what they mean. Even though the road has been rough, humanity shows it self in some of the most giving and selfless ways.

The prayers of the children. When Ellie had her successful heart surgery, (her first attempt didn't go so well) my little girls kept asking my sister-in-law what time it was. When she said it was two o'clock, them and my two nieces went down to Kylie's room and each took turns saying a prayer. They did this on their own without any prompting. But this made them feel better and helped us feel better too. We will keep you updated on how things go tomorrow.

Friday, December 4, 2009

Update!

We are home! It's interesting that her shortest hospital stay has been for her heart surgery. Hopefully, we can keep her healthy and out of the hospital. It's really hard as a mother to watch your child go down hill so fast. This made us so grateful to be closer to Primary's. It still seemed to take an eternity to get there. The nurses were wonderful, even though we were on the other side. We have a list of nurses that we usually get when we are in the heart section. Ellie is doing better minus losing a little bit of weight.

On another note, one of her heart buddies received the precious gift of a new heart! Please remember them today during surgery and the family that gave this precious gift. For they are suffering tonight. We hope goes well tonight.

"If Life Gets To Hard To Stand, Kneel."
-Gordon B. Hinkley
(Anna, if you read this, I lost your info. so when you have a chance, please e-mail me at rebeccacason1@yahoo.com)

Wednesday, December 2, 2009

Ellie's back in the Hospital!

Well, we're back. This time we went to the ER. It was our first admission through the ER. So I was pleasantly surprised that it didn't take three hours to be seen but it did take three hours to get to our room upstairs. The good thing is it's not her heart this time. The bad thing is it's a virus that has to run it's course.

We spent time with family for Thanksgiving and two of the cousins got ill. Then the next day Ellie got ill but she didn't get better. By Sunday she was totally lethargic and vomiting. We rushed her here and because she is on diuretics and of her heart condition, they thought it was best to admit her. We are hoping to be out of here soon. Well, my next post I will try and make it more positive. Thanks to Karen and Kayelynn for taking the girls after school and to my Mom-in-law for helping them in the morning and stuff. And to Rachel for sitting with her so I could get a break. Love you guys, it always takes an army of people when we are thrown off like this. We are just greatful to have such good friends and family to help out.

On a side note: please keep Ellie in your prayers next week as she has her MRI on Dec. 9. She is getting her tumor and her heart looked at. We are hoping for an uneventful MRI and good results.


We have been here since Sunday and every night I keep thinking that when I can pay it forward, I would like to get some comfortable sleeping chairs that you can actually sleep on. I am exhausted from no sleep. Hopefully I can sleep in my own bed soon.

Tuesday, November 24, 2009

When to expect the unexpected....

Well, life is fun isn't it? It's like a roller coaster ride you've never been on before. You never know which way it's going to go. Up and down in and out around and around. Well our life gets better and better. We've dealt with a lot of changes lately. So this change was quite unexpected but greatly wanted and exciting. We are so pleased to let you know that we are expecting!!!

-The good thing is I don't have mono, but the doctor said there is a perfectly good explanation for my sheer exhaustion.

-After several complicated pregnancies, we are cautiously optimistic. We know that things can happen late into the pregnancy.

-We will have two, count them two in diapers for quite some time.

-We are nervous about the idea of taking care of a child with special needs and a newborn. We have a fetal echo in 5 weeks to see if the heart is o.k.

-We know that we will get through this with all the support that we've gotten from family and friends.

-Why not throw another loop in the roller coaster. It may be a wild ride, but it's our wild ride! And I am in it for the long haul.

-We always wanted another one after Ellie. We thought closer than five and a half years would be nice.

-Phenergen and Zofran have become a constant companion. Isn't it great to be in modern day!

-For some reason after four girls, I feel a little pressure to have a boy. But we just want a healthy baby.

-with God, all things are possible.

"Things work out, it isn't as bad as you sometimes think it is. It all works out, don't worry. I say that to myself every morning. It will all work out. If you do your best, it will all work out. Put your trust in God, and move forward with faith and confidence in the future. The Lord will not forsake us. If we will put our trust in him, if we will pray to him, if we will live worthy of his blessings, he will hear our prayers." — Gordon B. Hinckley


So, we appreciate all the support we have been given thus far. Especially all the thoughts and prayers on behalf of Ellie. You have no idea what that means to me and our family to have people call or stop by and just give us words of encouragement. And we feel all your prayers for our family. Thanks to all the heart moms for words of encouragement and support. Thank you for all your support from St. George to here to places all over the country. We have the best family and friends anyone could ever want. We are really excited to be adding this baby to our family.

Boy or Girl?

Wednesday, November 18, 2009

When life gives you lemons.....

Let's make lemonade!!! I am feeling very great full for my life right now. I feel very blessed to have the people I do in my life and to have gone through the experiences that I have. I feel that they made me who I am today and have witnessed the amazement of humanity that comes from experiences we have had. We are extremely blessed to have all of you and our savior in our lives. We could not do this alone.


This story is not for the faint of heart, so if your squeamish, this may not be the story for you. I remember a story from my childhood that reminds me of how life and marriage is. My older sister and I were really close. We did many fun and strange things to entertain ourselves. One day we decided to have a glass of lemonade. When we poured the lemonade, there was only one more glass. So instead of splitting it up, we decided to take a drink, than spit it back, than pass it back and forth to enjoy it a little longer. A few times we would accuse the other one of actually swallowing. It got to a point where we gave up on the lemonade, and went back to playing.


When life gives you lemons, make lemonade! Sometimes you taste it and it's sweet or bitter. Sometimes you swallow and take more and sometimes you give back more than you got. In marriage it's a lot of give and take, sweet and sour, refreshing and hard to swallow, and every once in a while you get a seed. But in the end, I couldn't ask for anything more. I couldn't ask for a sweeter life.


I have been married to my best friend for ten years now. Ten years!!! I can't believe all that we have been through in the last decade. Including our legacy we created in our children. I am so proud to be their mother and Nate's wife. I know a lot of you feel that you have the best husbands, but I truly feel that we couldn't be a better match for each other. These experiences over the years has bonded us beyond words. And I am so great full to know that we will be together forever. Our little girl, Eve, is ours forever, along with our other girls. Thank you to all who have been a part of our lives. I just can't wait to see what the next ten years brings. Thanks Nate for sharing this beautiful life with me!!!


"Each of us will have our own Fridays—those days when the universe itself seems shattered and the shards of our world lie littered about us in pieces. We all will experience those broken times when it seems we can never be put together again. We will all have our Fridays. But I testify to you in the name of the One who conquered death—Sunday will come. In the darkness of our sorrow, Sunday will come. No matter our desperation, no matter our grief, Sunday will come. In this life or the next, Sunday will come." — Joseph B. Wirthlin


Saturday, November 14, 2009

Knock knock, who's their, the great gamboo...

I am a little slow on this post, but in my defense, we have been held hostage to the great gamboo. We are now over it, but it started with Adrie, two weeks ago she fell ill, followed by Macy three days later, with an asthma attack and an illness, than dad a few days after that. The good thing is that Ellie never seemed to get sick and that was a huge sigh of relief. I felt like a pharmacy, dealing out Ellie's usual heart meds, plus all Macy's asthma meds, along with cough syrup to everybody. Needless to say, I am exhausted from being kept up from all the coughing, not by me mind you. But I feel much better knowing that they are over it and we kept Ellie from getting it.
We did have a scare from Ellie last Friday, she wanted to keep us on our toes and keep our guard up. She was walking along the couch and fell backwards. I think it scared her and she let out this big bellow of a cry. She continued to hold her breath until she passed out! We laid her down so she could catch her breath, but it still took about five seconds for her to start breathing. We were this close to calling 911. We called cardiology, and they thought it was just from holding her breath. But when it comes to these heart babies, your not sure how much pressure their little hearts can take. We are just wondering how much stress our hearts can take. Ellie's really good about making sure our hearts are beating good.

Sunday, October 25, 2009

Cardiology Visit!

Ellie with her cardiology doctor. We love her. She's been there from the first diagnosis with Ellie and we value her opinion. She loves her patients so much and wears her emotions on her sleeve. I almost know what she is going to say when she comes into the room.
When people that don't know her, come up and talk to us, inside I am thinking, "you have no idea how special this little girl is and what she has put the rest of us through."

Cardiology Visit!

Ellie with mom and Grandma keeping her entertained. She actually does pretty good if you have a bottle ready and bubbles.

Cardiology visit!

A little frustrated right now, Ellie is looking so good. We went to her visit and she is clinically checking out physically really well. She does seem to get tired when she plays or is active for very long. But her BNP level is way down. Not normal, but pretty good. And Dr. Everett says she normally doesn't list kids for a transplant until they are in the thousands. We just need her echos to see a change for the better. There is still no change, which if you saw her, you would have no idea her heart was barely functioning. I know that this will not happen overnight but I would like to see the slightest change to know that her heart has a chance to recover. Her next visit they will do an MRI for her tumor and her heart. I have feeling that this tumor is going to be gone from the way the last scans have gone. So instead of doing a cath, they will look at the heart at the same time. If you know how Ellie has giving us the scare of a lifetime during an MRI, we could use some prayers to help us get through this. Just scheduling it gave me the butterflies. I still jump when they come over the loud speaker just to page someone or get a hold of someone. I will never forget feeling so helpless as they called the code blue to MRI imaging knowing she was in there. I still remember everyone running past us to her room and the nurse coming out and yelling repeatedly, "where's the paddles, we need the paddles." You can hear everything, but it's muffled. Everything is in slow motion but going to fast. Dr. Pulchowski came out to talk to us afterwards, and I felt like my eyesight narrowed and I was passing out. My hands and my feet went numb. I was so relieved that she was fine, but physically and emotionally drained. It's amazing after you go through something like that, how you feel like you ran a marathon. Nate and I crashed that night, we never slept so good the whole time she was in the hospital until that night. We know how much prayers are needed and help us. So keep her in mind so we can have a smooth MRI.

Good bye St. George!!!


Well, we have a lot of changes coming to the Cason house. We have decided, kind of hastily, that we will be moving to the Salt Lake area. We have made four trips in September up North. Either for Ellie, or for Nate for an interview. One already in October! We feel at this time, that we need to be up here closer to the hospital during this phase in Ellie's situation. We also have a lot of family that can help us out. We have such an amazing support system. From all our Sis' and folks and friends that dove in to help with out a question. And took on two extra kids all summer. And all our visitors at the hospital that came to watch Ellie so we could escape to the lunch room or go for a walk. We also have a great support in St. George, but there has been many a night that we debated whether to take her to the hospital here or drive to Salt Lake when Ellie chooses to have a rough night. This has been a journey full of twists and turns but I will say that I would rather be on the journey than not. I have a plaque that I got that says, " find joy in your journey." So, I will do my best to make the best of our situation. Good bye seventy degree weather and flip flops year round! I will miss you. The nights with out mosquito's and flying things, good bye. I will not miss you, the tarantula that I found on my porch or the scorpion that we found in our garage that was five inches long. I will miss Tuesday night pickle ball with the ladies and walks all year round. I will not miss cockroaches and the blistering summer heat. We will be back. We have lots of people that would let us stay, right?

Macy on the last day in St. George with her teacher, Mrs. Chadaz. We loved their teachers and were sad to say goodbye to them so early in the year. Macy started to cry which in turn made me cry, which made several of her girl classmates cry. I didn't know whether to laugh or cry some more. The girls and us made some very good friends during our time here.
Adrie and her teacher, Mrs. Hunt on their last day of school in St. George. Adrie loved her teacher and her class. In fact on the first day of school, she came home and said, "that was the best day of my whole life."
Our house in St. George is ninety percent tile. So this walker was perfect for Ellie to scoot around the house in. This is what Ellie did a lot of when Nate and I were packing.

Chillin' like a villian


Showing her flexibility and chillin' with her aunt Jillian. She is always posing for us when we pull the camera out.
Ellie had her eye appointment to look at her Horner's Syndrome. (The tumor that is on her sympathetic nerve caused her eye to droop and be a different dilation than the other.) They give us the dilation glasses and she has worn them every time without taking them off. She kept them on all evening. Here she is eating a graham cracker.

Tuesday, September 29, 2009

Happy Birthday Eve!

We went to visit Eve's grave last time we were up north. We cleaned up her marker and trimmed back the grass. Today was a beautiful day. We miss her terribly and she changed our lives forever even though we only got to physically hold her for a few hours. I am glad that some of our family got to hold her too, but looking back I wish we would have allowed more of you to take in such a beautiful time in our lives. She looked so perfect and peaceful. I remember that her hand seemed to grip my finger as if it were her way of saying that things were going to be o.k.

Wednesday, September 23, 2009

Don't take life for granted

Ellie conked out and taking a siesta on the floor. She is starting to take some decent naps.


We recently returned from Ellie's appointment at Primary Childrens. The over all verdict is that there is no change in her condition. The only way that I know how to look at this is that at least it hasn't got any worse. Dr. Everett sounded really positive about how she looked though, she had gained weight, which is a huge deal for these heart babies. She is going to give her about three to six months to see if heart function improves. They are also going to watch her pulmonary pressures real good to make sure they stay open. She said if they go bad, they can't even talk transplant. So we are once again in a hurry up and wait situation. We are taking life a day at a time. And enjoying every day because you never know what tomorrow will bring.

On the way up, we saw a crash that involved two vehicles. It did not look very good, and as we approached it, we could see that a blanket was spread across the passenger side of one of the vehicles. It is very sobering to see that and to think that probably a half hour ago was alive and well, with the family or friends that they were with. And now they are realizing that their worlds will be forever changed. Every life is so precious and it can be taken in an instant.

We are going through a rough patch in our lives right now, but I can't help but feel so blessed. We feel our saviors love and the love of those around us. I couldn't be blessed with a better husband and father to my beautiful girls. He has been my rock and my companion and we have truly grown closer through adversity. Every mile stone that Ellie has reached has been a miracle in itself as well as my other girls. Macy is doing well in Math and it is priceless to watch Adrie learn to read. I am hoping for a good memory because that is all you can take with you when we leave this world. "Be kind, Everyone you meet is fighting a hard battle."-Marjorie Pay Hinkley. Some battles are harder than others but I know that we can learn and grow and become better people because of them. Anytime we got down on ourselves at the hospital, we didn't have to look far to find someone worse off. We are still learning from the strength and resiliancy of others. We don't know where we will be a few months from now but we are greatful for the health Ellie has and we are praying for improvement. She is such a blessing in our lives.




Tuesday, September 22, 2009

The Heart Walk!

So, we went to the Heart Walk for the Intermountain Healing Hearts organization to support them. We came from St. George so it was quite the trek. My Uncle Ty and his family were so gracious to allow us to stay with them in Orem. Thanks guys. This was kind of a last minute deal, so we apologize to those of you who didn't know. This year it was just us, but I am extending an invitation for next year for all who are interested. This is a wonderful support group for us that gives back 100%. So next year we plan on having everyone that can come, come walk with us. It's only a mile, these are heart kids we are talking about. We had a lot of fun and enjoyed the perfect cool morning. It was also so fun to meet so many heart buddies that we have gotten to know through the blogging world. I would post pics, but I gotta admit, I am not good at having my camera with me so Hilary, if you see this, she took a picture of us there, send it to my email. I would be so appreciative if you would. So we will make it a date for next year.

Wednesday, September 2, 2009

What's normal?

O.K. so we are trying to establish a new normal. We got back from our third visit to the pediatrician in a week and a half. Yesterday, she was throwing up and struggling to eat again. When she does this, I convince myself that we are going to be life flighting her up north and that they are going to be telling me her heart is getting worse. She was hornery all day yesterday and really struggling. If this were my other kids, I wouldn't think twice, and chalk it up to fussy baby day. The days that she does this, I sleep horrible! I toss and turn all night to my husbands delight, counting her breathing and listening for her all night. Every time she would get close to sixty breaths per minute, my mind would race and I would think the worst. I have to figure out a way to relax at night because I am a walking zombie during the day.
We are adjusting her lasix right now. At the last appointment, they cut her lasix in half, but the doc down here felt like she needed to take the pressure off her heart. So after he called the cardiologists, she's back on it twice a day. It seemed to have helped, but she has lost five ounces since last week. This might not seem like a lot, but for her we are having to be very watchful. I wish I had some magical button that alerted me and gave me a readout as to when to take her in and what she needs. I probably am over thinking everything, but after her history, how can you not second guess yourself. Anyone, know of anyone giving away free massages? I think I need one. Big breaths, right now it's time for bed.

Cardiology Visit

We've spent a lot of time with Michelle and Dr. Everitt. So we had to get a picture with them. They have been great friends besides, helping us get through this.
Ellie earned her cardiology shirt at her last visit. She was showing off for them and trying to show them that heart surgery was no match for Ellie this time.

Thursday, August 20, 2009

We are Home...

We came home yesterday and crashed. Over the last three months, we collected a lot of stuff during the summer. Every weekend Nate came up, he would bring stuff off a list I gave him, so when we came home, we drove our van and my father in laws car stuffed of things we collected. It was bitter sweet to come home. The girls had such a fun summer, and we had so much help from family and friends, but it was nice to be home and be a family. We can't thank everyone enough for sacrificing all your time and energy to stop what your doing and help with the girls, or come visit in the hospital. And if you were praying for us, we know that the power of prayer is real and has blessed us over and over. We were able to get through these trials because of your endless prayers. So, thank you.

The appointment for Ellie went really well. They said she looked like a different baby. The cardiologists did an EKG and a chest x-ray and they were good results. They didn't do a echo cardiogram because they thought they didn't need to unless there was a reason to worry. We don't have to be on oxygen during the day but she still has to be on it at night, yeah! You feel so tied down when your on it 24/7. I am just leaving her tabs on because their so rough on her skin when we change them out. If anyone has something that gets these off better, let me know. So we have a follow-up in four weeks. Pray for function increase. Her function is at 23-29 percent and her cardiac output is at 10-13 percent. It's a little scary that one can be living off of those numbers. They would like to see a change in the next month to two months. Once cardiomyopathy happens in adults, it is very hard to see any sort of recovery, but in children they have a better chance at seeing heart repair.

So, we settled in last night and the girls were off for their first day of school. Yes, I do have other kids. Adrie got in the car and shouted, "that was the best day of my entire life." Which I hear often along with, "this is the worst day of my entire life." Oh the life of a drama queen! We already love our teachers. They have been really good about missing the first week of school and seem to be a good fit for the girls. Ellie seems to be sweating a lot more down here but it is 106 degrees today. She really seems to be working so hard when she eats too so we will just watch that. Sorry for the long post but I had a lot to report. Miss everyone already!

Tuesday, August 18, 2009

Cardiologist appointment tomorrow!

It's finally here! Our appointment to see how Ellie is doing. I have been getting more nervous as this day arrives. I feel like all is going well right now except for some of her weird breathing again. They are going to increase her carvedilol and do a echo. I am nervous to find out her numbers. Her heart was the same function for the full eight weeks from the catheterization to the surgery. Here's hoping for change. The good kind.

Oops...

So, I am just trying to figure this blogging thing out. When I did the below post, it came up backwards. I recapped in a little more detail, the week of the surgery. So if you want to start at the bottom and go up, it makes better sense. Plus it is one a.m. Hope you enjoy some of our pics.

Monday, August 17, 2009

Ellie's week in the hospital

You would think that after heart surgery and a hospital stay, that you would come home and crash. This was Ellie's euphoria that continued the whole day. Not one sign of tiredness or fussiness. She finally fell asleep late that night. She was so glad to be home!
She stole the show as we walked out. So many people stopped to say "hi".

One of our favorite nurses, Nicole. She is our good luck nurse. She was there for our "successful" MRI and this time on going home day. We had so many good nurses there.


This is me acting like heart surgery was a breeze. The nurse commented that this is why she likes working with children, because if this were an adult, they would still be freaking out and saying, "this and that hurts" for weeks where as these kids rebound like nothing happened.



O.K. guys, I am ready to go home!

I love this picture! We had made it to the floor and this is in her cute hospital pajamas and her bingo prize (the blanket) that she won. By the way, everybody wins whether they play or not.

As soon as we got to the picu, we went and found her favorite hospital toy. The rain forest scene. She actually looked at it like she recognized it.

She had so many medicines going into her. As the night went on they removed little by little.

Notice how many I.V. lines they have coming out of her. It was a scary sight to see her like that, but felt blessed that everything went well.

We didn't know what to expect after what happened last time. Here she has gone since midnight without food and she is calmly sitting there. What a trooper! I can't hide how scared I am right now.


For some reason, my face says, "there's something going on, I just know it."


With Grandpa Cason, where Ellie spends a lot of time getting rocked to sleep.



All three girls getting ready for the big day.
This is Nate and Ellie, the morning of the surgery. We were both trying to smile, but the worry was tremendous!














Tuesday, August 11, 2009

Doctor visit

A little over a week out and we saw the doc today. Her heart murmur is gone! Other than her strighter, she is doing well. We need to get her heart function improving, but they said that can take weeks or even months. They are hoping with the right combination of meds, that it will start to repair the heart. Now that we are on this side of the surgery, I am glad that they fixed it when they did. Dr. Everett was right on because she was at her peak. Her legs were starting to marble again, the vomiting was getting worse and she was breathing faster than she had been. Plus, they were able to get the aneurysm out at the same time. (It was next to the coarch, and was caused by the catheterization during the first procedure.) I am so glad to get that off my shoulder. We see the cardiologist next week. I'm hoping for an increase, even though they said it won't happen.

Remember...

Anytime I hear of a child passing away, my emotions of losing Eve come back. My biggest fear is that I'm afraid people will forget about her. She changed my perspective on life. I saw miracles happen and even though we couldn't bring her back, it changed the way I feel about life. I would like to say thank you to all those who came to her funeral and helped with everything. The many friends and family that kept me company to help keep me busy. I had ladies cleaning my house and even an acquaintance of my mom's donate the headstone. (They did that for us that year instead of a sub for Santa.) We did not get to come up for memorial day this year, so some of our family went by to make sure her grave was visited. Thank you, now I will get off my soapbox. I just wanted to remember her...

Monday, August 10, 2009

Bridger



The heart Community is mourning the loss of superhero Bridger. Please pray for his family during this difficult time. Our hearts go out to all of you!

Friday, August 7, 2009

Going Home!!!!

The doctors have really changed their tune today. Ellie flipped a switch and is doing well today. Yesterday, she had a bad day so when the night nurse got there, she noticed that there was a huge difference from the night before. We had respiratory therapists in and out all night to see what they could do. They think it is reactive airway from being intubated. So they have been doing treatments all day. They also think that she needs to be suctioned but are weighing the pros and cons. If they suction it could make it harder for her to breathe. Well, they suctioned and that seemed to help. Today she is a different child. She is laughing and pulling her big grins for the doctor as if to say "look how good I am doing, I can go home now." They feel like she is doing well enough to go home. They do however want us to stay here in the valley until we get the ok to go home. She does have her medications and oxygen, but at least they feel good enough to have her out of here.

Thursday, August 6, 2009

Belly Breathing!

Ugh! She woke up today and was not in a good mood. They took her down to x-ray, and from then on she was screaming, then threw-up, then more screaming. By the time the doctors did their rounds, she was belly breathing. That's where she is breathing faster than sixty breaths per minute and her little belly is sucking in and out so hard, she is retracting in all three spots. I do not like when she does this because she did this before we found out about her heart and when we got to the hospital, she was in heart failure. Hopefully they can get this under control. They may have to tweek a few medications or something.

Wednesday, August 5, 2009

video

Ellie felt much better after she was able to see her sisters Macy and Adrie. We moved out of the PICU and are on the Medical Surgical floor. She is doing well, all things considered.

Tuesday, August 4, 2009

Ellie 17 hours after surgery and two blood transfusions later and the breathing tube out! She woke up and was responsive for the first time. She is playing with her favorite toy, medical tubing. She will be able to have her first meal at 2:00.
This is Ellie 1 hour after surgery! She was a little brachycardic "low heart rate" off and on through the night.

Monday, August 3, 2009

Surgery Update!

Well, things went better than expected. I did better than expected. I have been a nervous wreck all week long. I was crying all morning, but when I got here, I felt amazingly calm. I know that we have been in a lot of thoughts and prayers lately. So thankyou to many prayers from around the world. I couldn't have gotten through this without a higher power.

She went in about three and did amazingly well considering she couldn't eat since midnight the night before. We sat there for an hour before our first update. (Last time during surgery, her heart gave out during the anesthesia and the surgeon came in a half hour after she left, never a good sign.) So us and our parents and Marie, said nothing for an hour, just staring at the doors where they come out of the operating room. They came and gave the first update and she did well this time. They continued to give us updates every hour till she was done.

In all, she did great. Her heart was strong enough to stay off the heart and lung machine. She came out intubated and highly sedated. She has a chest tube and her fluid is high right now, but hopefully they can get that stabilized. They have her on morphine but every time she starts to wake up a little, she is extremely uncomfortable. They hope to extubate by morning if her stats stay up through the night.

I feel so greatfull to everyone for helping us get through this. Now we just have to get her heart function to get better. If it doesn't, they have briefly suggested that she may be a candidate for a transplant down the road.

Sunday, August 2, 2009

Surgery Tomorrow!

Ok, big breath, we are here! Today is Sunday and Ellie will be in surgery tomorrow! I am starting to feel very uneasy. However, I feel better about it, this time around. We are not in an emergency situation and I feel that they are better prepared for our Ellie, who likes you to expect the unexpected.

Since we just started this blog, I will give you a brief story of how we got here and then I will go back and give details of our journey. Ellie was diagnosed at three months with a neuroblastoma or tumor in her neck. At five and a half months and numerous trips to the doctors, she was diagnosed with congestive heart failure. She was born with a coarchtation of the aorta which caused her heart to be severly enlarged. Her left ventricle touches her ribs. They tried to repair it the next day and her heart gave out so they aborted the surgery and did a heart catheterization and a balloon stint and that worked for the time being. This gave her a chance to get stronger and healthier. Her liver has decreased in size and everything else seems to be pretty healthy. So this time, I feel like she is ready, but as a parent, couldn't be more scared. We are incredibly greatful for those around us who have picked us up and our carrying us through this trying time. We know that our savior is there also and are leaning heavily on him. We will keep you posted in the days to come.

Going Home!!!!

After two and a half weeks, they felt like Ellie was strong enough to go home. She was so excited and thanks to numerous people who helped in the recovery we were on our way. (To Bountiful, not to St. George because they wanted to monitor her close by.)

After her first heart surgery

This picture is a little hard to look at but this is after a successfull surgery to balloon her heart. She was heavily sedated and restrained with baby handcuffs. It was so pathetic!
This is Ellie at two and a half months. This is Horner's Syndrome, which is a pinch on the sympathetic nerve. They did an MRI and found the neuroblastoma in her neck at the base of her skull. Since then her eye is getting better and the tumor is shrinking.

Sunday, March 8, 2009

Nothing can prepare you for "C"

So, we know that it is the Horner's syndrome. And there are a myriad of causes, including a neuroblastoma. That being the worst. So Dr. Richen's orders a scan done in St. George. When we got the results, we were excited, because they said that nothing was found. Dr. Richen's was excited also but wanted to confirm that it indeed was a Horner's Syndrome. So we took our scans on a C.D. and off we went to the Moran Eye Center to see Dr. Katz, a neuro opthamologist. This was a few weeks later, but we were feeling good about everything because they ruled out the tumor. They performed a procedure called a cocaine test. They put eye drops of pure cocaine in your eye to find out if it was a true Horner's Syndrome. The test confirmed that and all the doctors were intrigued because it is so rare and to see it in someone so young. They wanted to look at our scan that we brought with us. Next thing we knew, they were taking it over to Primary Children's to have the neurologist look at it. When the doctor called us back into his office, his demeanor changed. He says, " We have found a tumor at the base of the skull in her neck." My stomach hit the floor. If you have ever gone through this, you know what this feels like. It's indescribable. I put it like this, "now I get it, this is what it feels like to have your child diagnosed with a devastating illness." Nate and I and Nate's mom were speechless. We were here to find what else it could be. That was supposedly already ruled out. I thought this must be a mistake. That first night I cried all night. You think doom and gloom when you get a diagnosis like that. That next day, I woke up and decided that we were going to fight this head on and not be so negative.

Tuesday, March 3, 2009

Horner's Syndrome...

Ellie was moving right along with everything as far as growth and development. But one night as I laid in bed with her on my chest, I felt that something was not right. A few days later, I noticed that as the day went on, her eyelid began to droop. By the end of the day, her eye completely covered her right pupil. When Nate came home, he noticed that her pupil was totally smaller than the other. We rushed her to the doc and he thought that her pupil drooped because of a benign cause and that her pupil was probably off and we didn't notice it until the eyelid dropped. I was back two days later because I was not happy with the "nothing is wrong" approach. They said, if we felt better, we could go see an eye doc. When Nate called the doc on the phone, she new what it was just from the description we gave her over the phone. We went in to see her and she gave us the diagnosis of a Horners' Syndrome. The two things combined, drooping eye and different dilation, mean that something is pinching the sympathetic nerve. This began our journey in the health care system.

Sunday, February 22, 2009

A normal day in February

Our three girls a couple of days before we found the horners syndrome.

Mother's Intuition

One night, in February, I was laying there with Ellie. Nate was working late, and as I watched her and her movements, I just felt like something was wrong. I tried to keep the thought out of my head and thought it was from my fears of losing Eve. There was nothing wrong with her that I could see except she hardly was moving her right arm, which is something I noticed from birth, but I couldn't seem to shake my worries. my worries were confirmed the next day when she looked like she had a stroke. Our adventures began that day and the quest to help our little Ellie Marie through the challenges to come.

Wednesday, February 11, 2009

But I was so careful...

I'm a bit of a germaphobe when it comes to my kids. I have taught them to push elevators with their elbows, flush toilets with their feet, and use paper towels to open the door. I didn't leave the house for weeks or go to church after Ellie was born for fear of her getting RSV. When the girls would get home from school, I would make them wash their hands and sanitize before they came near her. I went to my two month appointment at the doctors office and took all the necessary precautions. But a few days later, I noticed a slight cough and a wheeze. I debated, should I shouldn't I take her in. If she doesn't have it, she will probably get it, and if I don't, she could get worse. So, I take her in and sure enough, she tests positive. I'm trying not to be a baby about it but I tear up when the doc tells me it is positive. This started two weeks of suctioning and hospital visits in an RSV clinic. I don't get it, the more careful you are, sometimes it still doesn't matter.

Friday, January 30, 2009

December 2008, SHE'S HERE!

In order for you to know what is going on, I need to start at the beginning. Ellie was born in December of 2008. She is our fourth little girl. During the pregnancy, things were a little rocky due to some pre-term labor and extra precautions taken because of what happened with Eve. At thirty-two weeks, she developed tachycardia, which is a fast heart rate. They almost delivered me but after monitoring me for a while, she slowed down. After that she developed a heart murmur, which they kept a close eye on. Until I gave birth a few weeks early. The birth was relatively uneventful considering my other three were full of not very fun surprises. Ellie came into our world cute as ever. This was such a blessing after our last experience. I felt like she was our miracle baby.