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.

Tuesday, January 6, 2009

Sweet puffy boy - keeping it in perspective

This was little Mav when he was on ecmo.
This was a picture of his room. Yes, there's a baby in there.

Oh, Little Mav... He's puffy again. This was him yesterday. He really can't even open his eyes today. They've changed his dialysate to 2.5% and are doing hourly dwells to get some of the fluid off. He continues on the heparin for the suspected protein-losing enteropathy. They got a call from the lab yesterday about the alpha1-antitrypsan level - that's the test to see if he's losing the protein in his stool - and guess what they said. The quantity of poo was insufficient. They waited a week to let everyone know that. So, we're back to square one on that test. Other than that, not much has changed. They are wanting to do another heart cath. I just don't think he's up for that right now. Maybe after they get some fluid off. His little bottom is so bad right now. We're trying everything and it's just not helping. He's just not at a prime state for healing right now.

Greg started back to work yesterday. He's doing well, but is very tired and his back is sore at the end of the day. This week has been challenging so far. I didn't get home until 8:30 yesterday evening, so the kids were upset that they didn't get to see me longer. I left the hospital today at 4:00 so I could see the kids more this evening. Then I felt bad for leaving Mav. I just hate the thought of him being awake and just staring at the wall or his mobile with no one to talk to him. I'm sure the nurses talk to him, but I'm sure you know what I mean. They have other things to do. My aunt Cindy and my granny went to sit with him for awhile yesterday evening and my stepmom, Teresa, is sitting with him tonight. If you'd like an evening shift and know my numbers, give me a call. He likes his head rubbed and will listen to anything you have to say. You can't be scared of machines, lines, and tubes, though. I'm used to seeing them, so they don't bother me. I've had visitor in this week and several have commented on all the pumps and tubes and machines. My response is always, "This is nothing compared to what he was on after the first surgery." The above pictures just help me keep things in perspective. He's doing better now than he was on ecmo (thanks for all the gentle reminders when we were in Dallas, Mr. Perky).

Thanks to everyone for your thoughts and prayers. Love you all - jc

1 comment:

Anonymous said...

I don't have your numbers, but would be most honored to sit with the Mav. I could come Tuesday evening, the 13th, if that would be helpful. Other nights can be worked out, too, I just know for sure that one is open and Shawn is home. Tubes and such don't frighten me.
You and Mav are prayed for continually, Amber