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, January 29, 2009

Not sure about the kisses

Here's our sweet boy today with Maddie. The kids were out of school today due to the weather - again. Mav had a great day. He's still on a rate of 10 and his pressure support is at 11. They'll probably do some volume support trials tomorrow - Yea! If all goes well, he should be extubated in the next few days!!! I am sooo excited.

Here's the rest of the scoop. His white count is down to 15 - that means the infection is getting better. We had a few different consults today. One of the GI doctors came to see Mav. She made a few suggestions for his feedings and we talked about the PLE (protein losing enteropathy). His alpha1-antitrypsan level came back and it was high, so he is losing his protein through his intestines. It's a pretty complex problem, but he's on heparin now for it and it seems to be getting a little better. Another alpha1-antitrypsan level was sent 2 days ago to see if the amount of protein in his stool has decreased any. One of the cardiologists came to see Mav as well. Just checking in and will be checking on some type of home dosing for the heparin. We saw Dr. Turman, the nephrologist (we see him every day). He decreased the amount of dialysis fluid that goes into Mav's abdomen to 60mls. Mav was breathing fast toward the end of his cycles and we need him to be very comfortable right now so everything will go smoothly with the ventilator weaning. He's on manual dialysis for now; the cycler wasn't working well with his small volumes.

So, I'm hoping Mav is extubated soon. He'll have to be on high flow oxygen for awhile, and there are some other issues that need to be managed, but if all goes well I'm hoping we can have him home within a month. Here's my disclaimer - that is just my timeline. We all know Mav has his own. I'm sure the doctors have their own, too, but I've let them know that I want him home as soon as possible. I don't care if we have to do IV meds, continuous feedings, or manual dialysis. I just want him home. I think they understand. Keep sending your thoughts and prayers. The next few days will be important ones for little Maverick - and us. Love you all - jc

4 comments:

Anonymous said...

I love the picture of Maddie kissing Maverick! You sure can tell what he is thinking just by his facial expression! So glad to hear that he is doing better...we are continuing to say prayers for you guys and pray that he will be home soon. Love you - Teresa

Laura-Marie said...

It looks like he is really moving in the right direction. Praise God! So many people I talk to ask me about him, and how he's doing...a friend of mine called yesterday and said her mom's Sunday school in Lubbock Texas is praying for a baby Maverick...Isn't it amazing to see the outreach and love and support so many people give! You are so smart to have blogged all of his progress (and have all of the comments you have)...I didn't and I wish I would have. Blurb.com is about to support Blogger so you can publish all of your posts and comments in a book! Just an fyi! Still prayin for that amazing little fighter!

Dianna said...

Oh that is so so precious...I am continuing to pray for him..I am glad you were able to stay right with him...xoxoxo
Mav fan

Anonymous said...

I am praying for baby Mav. Hang in there, I know he will be home soon.
Katie Landes