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.

Tuesday, October 28, 2008

Today he's making a little bit of progress. They tried a pressure support trial on his ventilator today, but he didn't tolerate it. Maybe in a few more days. He is still edematous in his chest - they say that's probably why he didn't do well. They had to stop his lasix drip due to some labs, so he's not going to get rid of the fluid as quickly. He's off the nor-epi (for his blood pressure) and they're weaning his epi. He's had some output from his chest tube today, but not much. They've also started some tube feedings, so hopefully he'll tolerate them. I wish I could give you all a great progress report, but little Mav is just taking his time. I think he likes it here in Texas. I keep telling him, "We don't live here. We want you to get better so we can take you home and you can sleep in your own bed." I guess he just has selective hearing... That's a boy for you.

One of my best friends from high school, Brenda, took me to lunch today. We had a great time and some great Italian food. It's always good to catch up with friends. Thanks, Bren!

More tomorrow - jc

3 comments:

Anonymous said...

Juli,
Just wanted to say hello to you from home. I so appreciate you taken the time to tell the story of Maverick's beginning of life. We will learn at some time the battles that we are fighting with Maverick, the children and being away from our home, friends, & church. I definitely believe that Maverick fighting for life and does not even realize his troubles. Hopefully this will show others what a present it is to even breath, God will definitely share with others the love of life thru Mav. The kids are doing well and miss you. I look forward to having us in one comfortable home. To those who have written and blessed us with prayers, thoughts, and other things, we definitely have felt it in our trials of life recently. God is Good. I love you and miss you terribly. Greg Clark

Unknown said...

Hi Juli,
Just a little note to let you know that you're on my mind. Maddie was so precious the other night at my house. She was such a good sport with the hour long hair-teasing session! David was giving her a hard time and I was yanking at her hair and kids were running amok all over and she just took it all in stride. She really is a special kid.
As for the rest of your brood, they all seem to be doing well - although, they'll be so happy to get Mom and baby home.
I wish the progress was quicker with little Mav. Just like a man, though, all in his own good sweet time.
Take care and we'll talk soon,
Meredith

Anonymous said...

Hey, Juli and Greg, Just wanted to tell you guys how wonderful you are and I so want Mav to hurry and get well and come home. I know how hard this is on you all and just wanted to say keep your chin up. I know God is hearing our prayers. Tell Mav, Aunt Cindy loves him and I love both of you and hope to see you all soon. It was great to see Maddie and Sandy and Brown and I am so sorry I did not get to see you last time you were in. Hopefully this time. Take care. Cindy