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, January 19, 2009

Watching his mobile

Here's Mav today watching his mobile. He had a good night and has had a good day, as well. He was awake alot today and seemed pretty content. Maddie was laying her head on his bed, talking to him, and tickling his chin. She started calling for me to come see him, but I was talking to Dr. Gessouroun. He had been smiling at her. How sweet. So, here's what's going on today... They are weaning the nor-epi and have decided to tolerate a little lower blood pressures due to the propanolol. They gave him some synthroid today to help his thyroid out which may also help his blood pressure. His nitric vent is off and he continues to wean on his ventilator settings (40%, R29, 18/3, TV 24 - he was up to a rate of 42 when he was so edematous). So far, so good. His white count was 15 this morning and his crp was 3. You know that makes me nervous. He has to stay on the right track. I'm not giving him a choice this time. They changed his dialysate to the 2.5% from the 4.5% today and they were going to increase the volume from 40mls to 55 mls. That's also a step in the right direction. He has a left femoral arterial line in from the heart cath, and they may take that out tomorrow. He got some IVIG today as well.

Maddie wants me to tell this story. She thinks we're famous. We were listening to 89.1 this morning on the way to the hospital - she was out of school today and went with me. The DJ was wanting people to call in and tell him their "dream" - as in "I have a dream..." She kept on and kept on bugging me to call in. She dialed the number and handed me the phone. I told the DJ my dream was to bring my 4 month old baby home. He asked me some questions and threw in a few jokes about not having another child and naming him "goose" (from Top Gun). Anyway, we got to listen to the call on the radio before we arrived at the hospital. Maddie was just beaming.

More tomorrow - hopefully all good news. Love you all - jc


Anonymous said...

Wow, oh wow! It was less than a week ago that we were at his side an he could barely open those beautiful eyes. How great is our God!
We loved the story from Maddie. Maybe next week you'll get to call in and share a miracle :-)
It was great to see you guys yesterday.
Love and Prayers,
Amber and Crew

Laura-Marie said...

Hey there,
I met you at the Heart-n-hands Christmas party and have been thinking of you ever since. I know I can't call the hospital and ask about you so I googled Maverick! I found your blog and hopefully I might see you tonight at the heart-n-hands meeting (I'm assuming you are still there). Anyway, I am going to forward Mavericks blog to my family and friends so they can be praying for him. I know you are so ready to just take him home and shower him with love and kisses, without tubes and beeping. You all will remain in my prayers, I am amazed at little Maverick's strength, and all of your family's as well. May God bless all of you and recover Maverick completely and quickly!
Laura-Marie Finley