Monday, September 29, 2008

Friday, September 26, 2008

Evan's Surgery Rescheduled

We received a call last night that an infant was born yesterday that needs emergency surgery so, Evan's surgery would need to be cancelled. I was at a loss somewhat - all this preparing and building up for the day to have it taken away. I cried... I had to tell Evan... then I thought of the family that would be enduring this walk with their newborn and remembered that God is in control. Who knows the reasons completely but... Jesus Loves us and is looking out for us. So... Evan's surgery has been rescheduled for the next Monday, October 6th. We seem to like October... Evan's first surgery was Oct. 26th. On my way to work this morning a song came over the radio just for me - the lyrics begin:

I am not skilled to understand
What God has willed, what God has planned
I only know at his right hand
Stands one who is my savior

Saturday, September 20, 2008

Friday, September 19, 2008

Indy Trip and Evan gets the news

Last weekend we left early on Thursday morning and took off for Indianapolis. We arrived at the zoo shortly after it opened and it was a beautiful day. The Indianapolis Zoo is amazing. We have a membership to the Louisville Zoo and we go there often but... WOW!!! We had so much fun seeing the sharks, sea lions, walrus' and the dolphin show was awesome. I felt like I was at the zoo part of the day and at Sea World for the other part. We had so much fun there. We got to our hotel right at checkin time and were at their indoor waterpark in no time. We stayed there until they were about to close. They had 5 seperate parts - a pool, a wading pool with a huge pirate ship, a lazy river, hot tubs and then of course some huge crazy waterslides. I was surprised that Evan passed the hight requirements to ride the slides. I asked him if he was interested in going down one with me on a double raft and expecting the answer to be no, he said yes. So up the flights of stairs we go and into the raft at the top - we start down this huge slide and I'm screaming and I hear Evan screaming and what I thought was crying. At the end we swoosh out and I jump off the raft to get him and he is laughing and screaming, "Let's do it again!" He is definately my child. Since the stairs going up to the slides were 4 flights - I limited our slide to one an hour but... Eric got it on video and I'll post that tonight. The next day we went to Indianapolis Childrens Museum and it is huge. Evan LOVED the dinosaurs and the dig site. He wanted to stay there all day and we even had to go back before we could leave. The rest of the museum was awesome to us but Evan seemed that either it was too small for him or over his head. We had a great weekend away.
Yesterday was our appointment with our beloved cardiologist who had offered to be the one to break the news to Evan. We went in and sat down and he sat across from Evan and began to draw a heart and explain to Evan what they did in his first surgery and why they did the cath and how the last cath didn't do it's job. Evan was listening and looking away and things in his office and then he said... Evan, you remember how you had the cath. and went to sleep, well... your going to have to go back to the hospital and go to sleep again and we are going to give you a super dooper valve and straw to make you strong... when you wake up your going to hurt and be sore but... I'm going to be with you and give you medicine to make it better and your Mommy and Daddy will be there... I will be with you in my pajamas so... don't be scared. Evan started telling him that he is strong, very strong. He told him that there are different types of strong - strong in that you can lift heavy things and then there is strong in you have courage and are brave. He told Evan that he would need to be brave. Evan said that he didn't like that and didn't want to. Evan told him that he needed to go in his shell and have a talk with himself (don't know where that came from.) and got back up and said, "No, we can't do this, not until I'm 5." He told him to talk to his shell again and tell it that he would need to be brave so Evan did this again with the same answer. He talked to Evan about how brave he has been in the past and that he could do it again and Evan said, "well... I need to talk to my shell again and this time I need you all to close your eyes and cover your ears." Dr. McOmber looked at us and shut his eyes and covered his ears and we did the same. You could hear Evan talking outloud to himself saying, "Yeah, uh huh, okay, no, I don't like this, okay, okay." He told us we could look up and we did and he said, "okay... we talked and we will be brave." He asked Evan if his shell was like him being scared and he said yes and he told him that, that is okay and that it is normal for him to be scared but that we would be there for him and help him. He then asked if we could leave and Dr. McOmber told him that yes we could leave but did he have any questions and he said no but he told him that if he did have any questions to call him or ask his Mommy and Daddy and that if we didn't know that we would call him. Evan went off to find the nurses and candy and stickers. We stuck back a minute and thanked him and he reminded us that there would be many emotions and that we would need to be patient and let him have those.
It was interesting to see how Evan reacted. So sweet and innocent and at the same time to see how he interpreted the information and spoke with himself.
So now we all know. We've got fun plans for the weekend - a pirate and princess party at our zoo and going to see Igor at the movies. Pray for us and that when/if questions are asked that we have the right words.

Friday, September 05, 2008

We have a date

I received the call today. Because of scheduling issues and not wanting Evan's surgery to be late in the week (any of you heart families know why, don't you?) we have agreed upon a date for Evan's 2nd open heart surgery to replace his pulmonary artery and valve, September 29th.

Evan had just fallen asleep when I received the call and for that I'm thankful. I had 2 hours to just let it out - all of these emotions I've been keeping locked. It is a somewhat helpless, powerless feeling - knowing there is nothing I can do to prevent this from happening or protecting him from it, as it is what is needed. Oh how it hurts. I think I had already prepared for the tentative Oct. 20th date and this seems oh so soon. After I pulled myself together I started thinking about how we would feel about this when Oct. 20th rolls around and we are on the other side of this.

I also had a call yesterday with the cardio to ask questions I had concerning the decision chosen to do a Homograft. The question I had was why cadaver was chosen over bovine and the reason I was given was that bovine valves are taken from the neck and do not include the artery branches. Evan's main problem is his left pulmonary artery. Evan's valve is leaking on the severe side but... they would not be replacing it now if they weren't going in already to replace the left pulmonary artery. The cadaver valve comes with the artery branches so that is what that option was chosen. I also wondered that since this is donor would he need rejection med's and he explained that since this is not a complete working part it is not needed, so that is good. I also asked if there is ever a wait for a match. His response was that, it had happened but once a date was chosen they would be looking to see if there was a match and if there was it would be reserved for him. On this.... I have always thought that being a donor was good, that I would do it myself but now.... oh thank GOD for the decision the donors and their families made. What a bittersweet topic...

So we have 3 weeks... This weekend is our Team Brave Hearts golf scramble benefiting AHA. I believe next weekend we will go away for a long weekend to just do something really fun and be together - I'm thinking Indianapolis to their zoo, then stay at their hotel with indoor waterpark and then to the children's museum the next day - Evan will love that. I believe that on Sept. 22nd we'll be going to the cardio so he can explain things to Evan and prepare him. If you see us between now and then please don't mention this in front of him. We do not want him to be worried and scared for 3 weeks. We have agreed that the cardio will explain everything to him and then that will give us a week to deal with the emotions as a family with him. September 26th will be pre-op. September 27th is our heart walk - I'm sure that will be a very emotional day. That will bring us all too quickly to September 29th.

Please pray for Evan... pray for us as parents to be strong... pray for the Dr.'s and nurses that will be caring for him and for the overall success of the surgery. It means so much to get the notes, calls, emails, etc. I'm saying this now because I seem to isolate myself but it truly means so much when someone asks and shows their concern for Our Little Braveheart.

Thursday, September 04, 2008

Song of my heart

The year Evan was born I was introduced to a local family whose son also had the same CHD and although I wish we hadn't met on those terms this family has become family to me. (By the way this awesome family is welcoming baby #2 - Jameson, through adoption from Korea hopefully this week!!!)
We formed a group with another family - Team Brave Hearts and this has grown now to 12 families and we are gearing up for our 4th AHA Heart Walk and giving our 3rd Golf Scramble this Sunday. It gives us an outlet to raise awareness and join our families together for a good cause.
Every year I make a picture show of all the heart kids involved and it plays to music over and over at the Country Club so the golfers can see why they are there. I'll try to post it here.
There are several songs that play during the picture show and "He's my Son" by Mark Schultz plays during Evan's pictures.
There is one song this year though that seems to speak my heart and I wanted to share it - Celine Dion's "Miracle".

You're my life's one miracle
Everything I've done that's good
And you break my heart with tenderness
And I confess it's true
I never knew a love like this 'til you

You're the reason I was born
Now I finally know for sure
And I'm overwhelmed with happiness
So blessed to hold you close
The one that I love most
Though the future has so much for you in store
Who could ever love you more

The nearest thing to heaven
You're my angel from above
Only God creates such perfect love

When you smile at me I cry
And to save your life I'd die
With a romance that is pure in heart
You are my dearest part
Whatever it requires
I live for your desires
Forget my own, your needs will come before
Who could ever love you more

There is nothing you could ever do
To make me stop loving you
And every breath I take Is always for your sake
You sleep inside my dreams And know for sure
Who could ever love you more