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.

Thursday, December 4, 2008


This was Mav today with his little booties on. His face is a little puffier, but overall he looks really good.
This was me holding Mav today. He did pretty well with it. I told him he had to get used to being up more, because the ride home in the carseat is a long one.

This was me holding him yesterday. I just held him with his little mattress and all because it would be easier on him. I didn't want to stress him out too much. He did just fine.

Ok, so the pictures go on here first and I'm not able to change that around, but I am up to six times for holding Mav... That's on two hands if you count with your fingers! I was pretty down on Tuesday with him not having any urine out in 48 hours, so I said lots of prayers and I think you all did, too. I went in to check on him at 5:00am on Wednesday morning and he had peed all over his bed! His nurse weighed the blanket and it was 13mls (about 2 1/2 tsp), and later in the day he peed a little more. He hasn't since then, but at least his kidneys are still making some urine. Home dialysis looks like it will be in the picture if things don't come around pretty quickly. It doesn't seem like it will be that big of a deal, though. It is hooked up at night for about 10 hours and then is off it during the day. If his kidneys don't make a come back, then when he's about 3 or 4 he'll need a kidney transplant. We'll just worry about that later, though.
So... are you wondering how I got so lucky to hold him? I will just say I think Dr. Chemelli (the intensivist) realized there was no stopping me - and I owe him a few quarters. Mav is doing well. He's up to full feedings via the tube and is tolerating them well. His IV nutrition has been turned off - yea! They continue to slowly wean his vent. For my medical friends he's on 30%, rate of 10, pressure support of 14 and peep of 6. We're hoping he can come off the vent sometime in the next week.
I'll post some more tomorrow. I'll be at home, so I won't have to worry about sharing the computers. Love you all - jc

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