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!

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...

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!

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.

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.

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.