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, January 17, 2009

Sleeping with his gecko

Here's little Mav today. He had a good night and was 500mls negative yesterday. He has shrunk and is now 4.2kg. He was a bit fussy today and they increased his fentanyl drip from 2mcg/kg to 3mcg/kg. He was really interested in his paci, but had a hard time keeping it in his mouth with his tube - he has many stuffed friends to help keep it there if Greg or I or one of his adoring fans are not there to hold it for him. They moved his tube to the other side of his mouth when they retaped it, so now the saying is upside down. I guess I just need to cut a hole in the other side of the paci, too. They are continuing to wean the nitric vent and he should be off it tomorrow. They have also started weaning his ventilator rate by 1 every four hours. Baby steps. His white count was down today which gave me some relief. His CRP is still hovering in the 1's - I know that's not high, but his has always decreased to less than 0.2. They increased his feedings to 24mls/hr - I hope he tolerates it. I feel like I'm holding my breath, just hoping and praying everything goes well.

The kids and I went to Walmart this evening while Greg was with Maverick. It seemed like everyone had a baby. Greg told me that the last time he went, too. I'm sure there hasn't been a baby boom or anything - we're just noticing it more. All those sweet babies make me smile. I want to tell the parents how blessed they are to have a healthy one. We were blessed three times with healthy babies, but never realized it until now. We just expected them to be healthy. All the times I complained about one of them not sleeping, or being fussy all day, or dealing with all the ear infections or bouts with croup... I would love to have those issues with Maverick. I wouldn't complain at all. If I do start to complain one day and you hear me, feel free to slap me. I won't slap you if I hear you complain, though. I know that any difficulty is still difficult, no matter how big or small. I think I'll appreciate the small difficulties from now on. Well, enough for now, more tomorrow - jc


Anonymous said...

Maverick looks so good today! The photo does show his eyelashes, but doesn't do them justice. He has the most beautiful eyes and his eyelashes are so long, they almost touch his eyebrows. Such a beautiful baby and such a good baby. It amazes me how much he can communicate with just his eyes. I can't wait for the day he goes home and everyone can be together...but like you steps. His time will come. God truly has something special planned for this little boy. Still praying for you all. Love - Teresa

Anonymous said...

Loving all the good reports! Keep 'em coming, Mav.
Love and prayers,
Amber and Crew