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, December 23, 2008


This was Maverick this morning. He was resting well. He's had a great day. Still weaning on his vent and his gases have been great. His current vent setting are 35%, R12 (yes, 12!), PS15/5, TV30. His pH has been around 7.4 and his CO2 has been in the 30's. People have asked me why I think he's doing so well - I say he likes Oklahoma.... But seriously, the only thing I can think of is that he's probably had that pleural effusion cooking for awhile and that's why he wasn't able to wean very well from the vent while we were in Dallas. With it now resolved, he's weaning like a champ. So far no re-accumulation of the fluid. The best Christmas present would be for him to be extubated! Keep saying your prayers - we're having lots of them answered lately!

He had a neurology consult today for his continued weakness, and they say he has ICU myopathy. There are several risk factors for it (paralytics, sepsis, steroid administration, and prolonged ICU stays) and he's had all the above. The good news is he can recover from it and the doctor said it doesn't usually affect the muscles used for breathing (which means he should be able to wean off the vent fine). The not so good news is it usually takes about 4-6 months to recover. The doc also said he's never seen it in a patient this young. Leave it to Maverick. He is getting a bit stronger though and is moving his head alot more on his own.

I was able to see many more friends today - thank you all! Maverick was able to see his poppa jellybean (my dad), Maddie, Carter, Chloe, his aunt Jan and uncle Bob today as well. It's been so nice to have him close to home. I'll update you all tomorrow - love you all - jc


Anonymous said...

God is good! You all continue to be in our hearts and prayers. We are so happy that Maverick is closer so you can be together as a family. He has been such a fighter... we will continue to pray for his complete recovery. Thanks for sharing the pictures... he is so handsome!
Tom, Gordona, Emily and Lauren Rowell

Anonymous said...

juli and family,
merry christmas to you all and congratulations on a successful move for maverick. we're so happy that you are all together again and that he is making strides daily. we are sending many good wishes for a peaceful holiday season - together.
God bless,
karlin and family