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 1, 2009

Greg went to see Mav this morning. He called me and said Mav didn't look good. I spoke with the nurse and asked about his labs. H&H were fine, WBC down, CRP down. I asked about his blood gas.... His pH was 7.19, bicarb 20, and base deficit -7. "He needs some bicarb" I say. "Are they going to give him some bicarb? Please go tell the doctors his mom is on the phone and his pH is usually 7.35ish and his base deficit is usually treated if it is greater than -3 to -5." He's gotten 2 doses so far and was getting ready to get a third one when I left. The past 24 hours he's only had IV fluids. They made him NPO (no formula) and he has no central IV access, so he couldn't have TPN (the IV nutrition). I'm guessing without the acetate in his TPN, his pH has drifted down. The nurse said he had a standing order for bicarb with a base deficit of -3 or greater, but I guess no one had noticed it... Hmmm...

One good thing today. They switched the heparin to IV. He's on a continuous infusion of it. I'm hoping we see a quick turn around with his protein losing and IGG deficiency. Some of the articles I've read said you can see improvement in two weeks. He still needs lots of prayers. His infection is improving and he's had no positive blood cultures for several days. They placed a PCL (a peripherally placed central IV) today and he's back on TPN. This little guy just needs a break - I hope the heparin works so we can start moving in the right direction.

The first day of the new year. I was thinking about that this morning. About a month ago I thought that 2009 would be a better year for us and this would be the year I get to take my baby home. I hope I'm right. I've had people ask how much longer he will be hospitalized. Honestly, I don't know. I'm pretty sure he'll be there at least a couple of more months. This has been agonizingly long and painful. I can't imagine how it's been for Maverick. Love you all - jc

1 comment:

Kim said...

Juli-
Praying Psalms 91. I love you!
Your sister in Him,
Kim