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.

Friday, January 9, 2009

Precious boy

This sweet baby is my little fighter. I told Maddie he looks like he's been in a fight in this picture and Maddie said, "He has." She's right. He was actually looking better this evening than he did this morning. This picture was from this evening. The darker areas on his face are bruising from the swelling. He was able to open his eyes just a bit today. He would hear me talk and open them as best as he could. His blood gases have been good today and his vent pressures have been better. They were able to wean his vent a little last night and this morning. The doctors are being aggressive at trying to get the fluid off. He is still on the highest concentration of dialysate and is pulling off quite a bit, he's just intravascularly dry. They want him to be dry in hopes that he'll pull back in some of the fluid from his tissues. They're keeping his blood pressure up with dopamine - it's at a pretty high dose. They've had to give him a couple of boluses when he dropped his pressure, and honestly, I don't really understand all the reasoning behind it, but I think they have a method to their madness. They also started milrinone and propanolol today to see if they would help with his stiff little heart. I didn't say yesterday, but he tolerated the heart cath without any problems. I was bracing for the worst - he didn't do too well after the last cath, but he surprised me with this one.

Speaking of surprises - I opened a diaper this afternoon and saw pee. I just about screamed when I saw it. He had just been having a little drip every now and then. Today he had 2 mls once and 4mls the next time. I don't know if it has something to do with the dopamine or what, but I was excited. It's the little things, you know?

Speaking of pee, the dialysis nurse came in today and taught me how to change his set-up and his bags of fluid and how to change his dressing. I'll be able to do that from here on. That took some anxiety away from me. I had been stressing over the inconsistency of the way different nurses were doing it. It's just difficult watching people take care of things dealing with your baby, especially when you know you could do it yourself.

Well, it's late and I'm ready for bed. Thanks again for all your thoughts and prayers. I'll update tomorrow. jc

1 comment:

Anonymous said...

My goodness! Your strength and faith in Jesus Christ is immeasurable. Mav is so lucky to have you and Greg for parents and of course his amazing brother and sisters. I love being able to see your children and hug them and listen to their thoughts about their baby brother. You are an amazing mother to be able to keep the kids at home and Mav and allow all of us to be a part of Mav's journey. He is the most famous little boy and we all can't wait to hear his version of his first few months of his life. I love it ..that as sick as he is.. he gets to hear his mommy's strong voice and look to her. I love you and our prayers are constant. sally b