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, November 28, 2008

This was a close up of Mav yesterday. Sorry I haven't posted in so long. We don't have a laptop and there are only two working computers in the PICU waiting area and they have been taken every time I've tried to use them. Mav is slowly getting better. His BUN (in 60's) and creatinine (1.3) continue to slowly drop. He's still on dialysis and not making as much urine as they'd like, but some is better than none. Today they're planning on doing the dialysis every two hours instead of hourly. Hopefully that will encourage his kidneys to start kicking in a little more. His bottom is getting a little better and they've started feedings through the yellow tube in his nose - it goes directly into his intestines. We're finally getting to use some of the milk I've been pumping. He'll have enough to last him until he's three! They are slowly weaning him from the ventilator. He's still not moving much, he's just so weak from being on the paralyzing meds and from all the swelling. It will probably take him awhile to recover his strength. He's back down to a good weight - meaning they've been able to get all the excess fluid off him.

Maddie and I came up and spent the day with Mav yesterday. Greg wasn't feeling too well and stayed back at the house with Carter and Chloe. We all got to eat a good Thanksgiving meal, though. Thanksgiving is my favorite meal of the year. I love the sweet potatoes and dressing. They have a support group here called "Heart and Hands" and they provided the meal for the PICU. As Maddie and I were leaving, we picked up plates for the others from the cafeteria. The food here is pretty good. Yesterday evening the kids and I went to see "Bolt" it was a cute movie. The kids really enjoyed it. I haven't seen a 3-D movie in a long time and it was much better than the Jaws 3-D from "back-in-the-day"! We've been trying to balance our time with the kids and Mav. We've all been able to go in and see him together several times this week, but there's only so much time Carter and Chloe can take in the PICU - you know?

The Shawnee News Star did an article on Mav, and it's in the paper today. For my family and friends not in the Shawnee area, you can find it online at www.news-star.com. I'll try to update again tomorrow! Love you all - jc

6 comments:

Anonymous said...

Mav looks so sweet and so alert! Very happy for the continued good news. Praise God from Whom all little and big blessings flow :-)
Love and Prayers,
Amber

Anonymous said...

Julianne,
He looks so much better. I'm glad to see that his BUN and Creatinine are coming down. Hopefully he'll be ready to get that ETT out soon and will tolerate his feedings well.
Love ya,
Michelle

Anonymous said...

Juli,

Thank you so much for all of the updates on cute little Maverick. I think about you all daily. I pray for you and little Mav and all of your family. If there is anything you need please please please let me know.

Jodi

Anonymous said...

Hi Juli, very nice article. Mav is looking really good! Such a cutie! I'm glad your family has been together for Thanksgiving. You all continue to be in my prayers. I know it's easier said than done, but please try to get some rest. I know you and Greg must be exhausted.

Sherry

allisonkidney said...

We continue to pray for little Mav and all of you. We pray he continues to make progress each day and that you all can be home together soon. He looks precious! Glad you all have been able to spend some together.
The Kidneys

Angela said...

He's looking so much less swollen! The photo in the news-star is adorable :) I'm praying for you all constantly.