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.

Sunday, January 18, 2009

Sleepy boy

Maverick was just worn out today. I'm not sure what kind of excitement he had last night, but he was resting well today. He would wake up for his vital signs and when we turned him, but other than that he was out. His numbers still look good and he's still getting the fluid off. He's on more than full feeds now so he can get some weight on. So far he's tolerating the ventilator weaning well. The nitric vent should be off this evening. He's still having some issues with his blood pressure and he's still on nor-epi. His propanolol and viagra could be causing some of the blood pressure issues. They are weaning his fentanyl drip and started him on methadone today to help him come off the pain med and that will hopefully help with his blood pressure. His little bottom is looking much better, and today when I was getting ready to change him he made a slight little kick with his left leg. It was very slight, but I saw it. The therapist, Peggy, says he's getting some hip movement and deltoid movement back as well. Don't get me wrong, he won't be swinging at us anytime soon, but it's slowly coming back. The neurologist said it could take 4-6 months or longer - the official name they used was "critical illness polyneuromyopathy". I've learned all kinds of big words so far. I'm sure Maverick has too. With the other kids, we would listen to a CD in the car that had an abc song on it. They sang a word and then made the letter sound three times behind it. I'm sure Mav's "ABC" song will go something like this:

Albumin, albumin, a a a; Blood pressure, blood pressure b b b; ceftazidime, ceftazidime c c c; dialysis, dialysis, d d d; enteropathy, enteropathy e e e; flaccid, flaccid, f f f ... You get the picture. I just have to laugh.


Anonymous said...

Mav is looking good. Thank you for sharing your pics of little mav. He is so precious. We are still praying.
the Huffmans

Anonymous said...

You don't know me, but just know that someone here in California cares. I've enjoyed reading your blogs for several months now and I always look forward to what you have to say. I'm Greg's cousin and the last time I saw him he was in diapers. Someday maybe we'll meet. You and Greg are wonderful parents and are very blessed. Someday it will all pay off.

Karen Cothron (Bray)