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.