Baby Maverick

This blog was created to keep family and friends updated on what's going on with the pregnancy, birth, and surgical plan for Maverick. We'll also be able to keep everyone updated during his surgery and recovery and hopefully be able to show you some cute pictures of him, Maddie, Carter and Chloe along the way.

This was the original intent; however, when we started this blog we had no idea the twists and turns our lives would take. Our sweet baby Maverick was born September 12, 2008 with Transposition of the Great Arteries, ASD, and VSD. We expected to have a baby boy to bring home three to four weeks after his surgery. He had numerous complications after his arterial switch and fought through many that would have taken the life from an adult. He passed away February 24, 2009 - without ever coming home.

This blog is now a place I share my feelings, work through the grief, remember Maverick, and try to make sense out of our life without him. I hope in doing so I am giving a name and a face to babies everywhere born with congenital heart defects.

Monday, June 8, 2009

I haven't posted a Mav pic in awhile and the little guy has been on my mind a lot today. This is one of my favorites. He loved looking at his mobile. This was one of the toys we hung from his bed. I've come to realize that the pain of our loss doesn't go away. Some days are easier, but I'll see a cute baby boy and ask how old he is only to realize that's how old Mav would be. I saw my sister and sweet baby Addison yesterday - little Addie is now a little over five months. That's how old he was when he died. I know I've said it before, but I just wish things would've been different. I wish he could've enjoyed normal baby things and wouldn't have had to endure so much pain. I'm glad he isn't enduring it now, though.
I was looking around at some blogs last night and came across one for PLE research. I signed up. As far as I know, Mav is the only baby that's been diagnosed with PLE. Most patients develop it after the Fontan. I thought if his problems could help someone learn more about the causes, we should sign up. I haven't received a response from them, yet.
I've also been looking at more grave marker designs. We have to have a flat grave marker where Mav is buried. We would really like to have it in place by his birthday, so we need to make some decisions. It's so hard to decide exactly what we want and I want it to be perfect. I'll keep you all up-to-date as we progress. If you have any good sites to look at, feel free to send me a link. I have three favorites so far. I just want something very unique. Something that will let people know how special he was and how much he is loved and missed. Here are two of the sites. The other one isn't working tonight for some reason. These are not exactly what we want for him, but they are the sites that have some of the most original grave markers. Here are the links:
Today Carter had basketball camp from 8:30-11:30. He went to a friend's house after that. He had baseball pics and a game this evening. He played well. No home runs this time, though.
While he was gone, Maddie and I went to the YMCA to work-out and Chloe went to play with a friend. Then the girls and I and some friends went back to the YMCA to swim.
Some exciting news around here: Maddie's tomato plants are growing big and there are several baby tomatoes starting to grow. She has some cucumbers and peppers growing as well. She's so proud of them. She's been taking care of them all by herself.
More good news: Greg's cousin, Rachel, had a good report on the tumor that was removed from her brain - it is not cancerous! She's recovering well.

Just an FYI - if any of you living in the Shawnee area have old shoes lying around that your kiddos have outgrown, the Hope House needs them. My friend, Dovie, took some things by there today and they said they really need shoes. They have been filled to capacity this summer. For you all not from Shawnee, the Hope House is a temporary place for kids to stay when they're taken into custody due to parental issues. They're there until they're placed into foster care. If you need more info, just let me know.
Well, enough for now. Love you all, jc


Bill and Mary said...

What a sweet boy. I just love his cute little face.

I like the marker from the first site a lot (almost sounds bizarre to say that). I love that they used the quote from Guess How Much I Love You. I think it's great that you're getting involved with PLE too. You will be a great asset to that cause.

Anonymous said...

Adorable picture of Maverick you have posted...I don't know how you couldn't miss such a precious face, so don't ever apologize for wishing things were different. I'm sure it won't be easy to place his monument on his grave, but you have some good ideas so far. If you don't mind me asking (since I am also a recent brain tumor survivor and have found a terrific support group) can you share what type of tumor your family member had removed?

Juli said...

Thanks for your sweet words. I'm not sure what type of tumor it was, but if I find out I'll let you know.

Anonymous said...

Juli, The tumor was a glioneuroma. Aunt Pat