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.

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.

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.