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.

Thursday, September 18, 2008

How am I?

I've had several people ask how I'm doing. I'm doing much better since Maverick is doing well. The last several days have been like a rollercoaster ride - and add on postpartum hormones - you get the picture... We have been able to get some rest and my mom and Brown are still here. The kiddos are back with Greg's family. Our sweet friend Meredith is getting the mail and the dog is with the kids. Thanks for everyone's offers to help. Right now we have everything covered - I'm saving all of you for later! Hopefully the road will be short rather than long.

Now about Maverick - they have set the time to take him off ecmo for tomorrow morning at 0700. They have been weaning him all day and he's tolerating it very well. They will be adding more medications as they wean him off and will have to titrate those according to how he does. He's still adorable, but very swollen. He's still sucking on his tongue and moves his little hands and feet and opens his eyes. His chest is still open and he has lots of tubes and drains, so I'm not going to put his picture on here yet. Just remember how he looks above and when he's all better I'll post one from now.

Greg was talking the other day and asked if I thought he had any of his own blood left in his body. I said probably not. I told the nurse about Greg's question and she said, "just to give you an idea - on my last shift with him on Tuesday we replaced his blood volume twice." It's just amazing what they are doing here. I really feel like we are in the best place we can be and he's getting excellent care from everyone. More tomorrow - jc


cindy said...

Julianne & Greg,
I just finished reading your latest post. I had wanted to call tonight but I'll try this instead. I'm so glad that you are where you are, it appears he's getting the best possible care. I hope everything goes well in the morning. I'll be thinking of you & sending postive thoughts your way. We would like to come down next weekend (Michelle, Mary, me & maybe Donna) if you all are up for the visit. Congratulations on your beautiful boy! Let me know if there's anything we can do for you. Love, Cindy

Anonymous said...

Wow, what wonderful parents Maverick has. He is truly a special little boy to be placed in your care...........Love, Lu Anne

Anonymous said...

Greg and Juli,
What a roller coaster ride you have been on! We are praying for you and baby Maverick for continued healing and rest. We are praying for his nurses and doctors too.

Teresa Gardner

Anonymous said...

As Cindy said, we are wanting to come and see you next weekend if you feel up to it. Wish we could be there sooner. I'm glad Maverick is doing better and hopefully coming off of ECMO tomorrow.Love ya, XOXOXO