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.