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, February 14, 2009

Our little Valentine

This is us with our little guy today. We were having computer issues yesterday, so I couldn't post. Friday Mav didn't act like he was feeling too well. His color was off and he was pretty sleepy. However, on the bright side, he kicked his right foot! The nurse saw it as well, then later that night his cousin, Debbie, who was sitting with him saw it, too! He moved his right leg from the knee about two inches. He is getting his movement back!

Greg was with him this morning and he started acting up. His color was bad and he started vomiting. It looked like poo. They took him down to radiology to give him some barium through his feeding tube to see if it looked like anything was blocked. So far, all is fine. They were going to take one more x-ray after I left - they're following it all the way through his bowels. So, why is he vomiting? That's the question we've been trying to get answered for about a month. The resident tonight said sometimes when the intestines get an overgrowth of bacteria this can happen. We'll see what Dr. G has to say tomorrow. He told Greg today that it's like trying to empty an olympic-sized swimming pool with a dixie cup and when they start making some progress the roof starts to leak. No one has ever accused Mav of being an easy patient.

He did have a good night last night. His gas this morning was excellent for him (7.31, 39), so they've started weaning again, but they're being pretty cautious - maybe even stingy. They're weaning by one breath per minute every 12 hours. I'm hoping that his gas tomorrow morning will still be great and they'll wean a little quicker.

So far the peripheral IVs are still working. We just need them to last until Monday. They're going to put in another PICC line then. Pray that goes easily for Mav.

Want something else specific to pray for?

1. No more infections and that this one will respond quickly to the antibiotics. 2. He will wean quickly from the ventilator without any problems. 3. They will find a solution for his feeding issues and he will be able to tolerate them without throwing-up. 4. He will stop losing protein and the edema (swelling) will improve. 5. His bottom will heal (this isn't just a diaper rash - it's a wound).

Thanks so much to all of you - more tomorrow -love you all - jc

4 comments:

Laura-Marie said...

Sweet Picture, at first glance it looks like Maverick may look like his younger big sister??? We went to the heart-n-hands valentine party yesterday, and everyone was talking about you all, and how they follow your blog, we are ALL praying for Maverick!!! Everyone is so emotionally into him!

Anonymous said...

What a great family photo! I am praying for all of the specific things. love, cousin Jenna

Anonymous said...

That is a wonderful family picture! Soon you'll have one of all of you at home. We continue to pray for that. -Gordona

Dianna said...

How precious your family is to us...I will pray the five...