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 13, 2008

Santa Baby

Here's our handsome boy in his Santa hat. He had a bad blood gas this morning after they tried to wean to a rate of 10 (for my non-medical people he didn't like them trying to wean him from the ventilator). His dialysis was also changed to 3 hour dwells at the same time and he was sitting up in a bouncy seat. Maybe all that change was just more than he could handle. I'm just praying he's not trying to get sick again.

There was a Christmas party at the hospital today put on by the "Heart n Hands" group. It's a support group for the families of pediatric heart patients. I had contacted them earlier on in the month and told them I wanted to meet someone who had been here for a very long time and had lots of complications and still had a good outcome. I met a little boy and his grandma that were here for six months before he got to go home. He had many complications and had to go home on a ventilator with a trach. Just seeing him walking around without any tubes helped me tremendously (no more trach either). There was another mom I met that said, "Just think, next year you'll be here visiting with him and you'll wonder how you got through it" - I really hadn't thought about it that way until she said it. Mav is such a strong little boy. I know we'll go home and be here to visit at next year's Christmas party. I just hope we're closer to the end of this journey than the beginning.

I was watching a tv show this evening in Mav's room with a little boy who had some severe medical problems and is now better. His mom said, "We walked through a valley, but the ending was glorious - he's just a miracle." Someday that's what I'll say, too. Thanks for everything. Love you all - jc

PS - Thanks to those known and unknown people who have blessed us this holiday season and throughout this time. Your generosity is overwhelming. May God bless you ten-fold.

1 comment:

Anonymous said...

The picture of Maverick in the Santa hat is precious. He is such a handsome boy! You guys have had another whirlwind week. ( to put it mildly) I am so glad that you were encouraged by so many others that have truly been were you are. I hope their journey will give you added strength. As I have said many times before, you are an amazing mom. Maverick is incredibly blessed. I wish I was there to give you a big hug! But I pray that Jesus will hold you and Maverick right now and that his angels will sing over you. I love you my sweet friend.