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.

Saturday, December 27, 2008

Sleeping like a baby

Here's little Maverick this evening sleeping with his monkey. I was getting ready to leave tonight and I rubbed his head and played his music and he went right to sleep. His CRP is down to 8 today - much better. He's back on feedings - 1/2 strength portagen at 10mls/hr. They're trying 1/2 strength since the full strength gave him diarrhea. His dialysis is still going well. He's still just peeing a little with every or every other diaper change. They weaned his tidal volume on his vent today to 25 (from 30). He looks good, and he stayed awake a lot today. The docs have decided to try him on epogen (it's a medicine that helps with red blood cell production). I guess that will start tomorrow. No other big changes. He's having therapy twice a day, every day. That should help loosen him up a little. His little arms and legs are so tight.

Greg is feeling better. He went to see Mav this morning and then I went this evening. I think that's the plan for this next week. Love you all - jc

1 comment:

Anonymous said...

I am so happy for you, friend! What a wonderful Christmas for your family. He looks great - he must be happy to be back in OK.

I will pray for him to continue to heal and gain strength. That he will be reunited with you at home soon. That you would have the endurance to manage a split household.

I am so proud of you and am encouraged by your deepened walk with God. You are precious.

I love you - Kristi