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.

Friday, October 24, 2008

Slow progress

Mav's chest tube output remains low today. They've started hydrocortisone today (an IV steroid) to help Mav with his blood pressure. They've been able to wean his nor-epi and epi once today. They're weaning them very slowly. He's six weeks old today - can you believe it? I never thought we would be here this long. He's staying awake and alert alot more now. When I get back to Shawnee next week I'll post a video of him watching his mobile. He just loves it. I might have carpal tunnel syndrome by the time we get home from winding up that mobile!

The infectious disease doc came in this afternoon and said they would stop the ampho-B and start him on an oral antifungal when he's back on feedings and tolerating them. The intensivist says that will be after he's down or off his drips and after he gets some fluid off. Thanks for your posts - I love hearing from you all! More tomorrow - jc


Anonymous said...

Juli and Greg,
Just wanted you to know you are in my thoughts and prayers daily. I've been watching your blog daily for every update. What a long, hard road you are on. I know that God is carrying you through this. I'm so glad you had a good visit with your older three, Juli. Please know I will continue to pray for you all. Love, Amy J.

Anonymous said...

Hey Juli
We are praying for you all. I love getting to see your kids at school. I see Carter more than Madi, as he is on my hall. They look good and seem to always have a smile on their face. We pray that little Maverick will be home soon so you all can be together! Much Love
Rachel Schooler