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.

Wednesday, February 18, 2009

No Luck Today

Well, it's been an emotional day. Maverick went in for the heart cath at 2:00 and around 5 or 6 the doctor came out and told us they were unable to do the cath. They weren't able to access the veins in his legs. I just keep telling myself, "there is a reason this didn't happen today - it wasn't the right time." That doesn't make it any less of a disappointment, though. So, the plan is to do a vascular study on his leg veins tomorrow and see if they are there and accessible or if they're not (if they have a clot or clots) in them. Then, if they aren't, they will have to do the cath through his right side and go in through the hepatic vein (a vein in the liver) to do the procedure. It's a bit more difficult and more risky. We'll just have to see what happens over the next couple of days. I know there is a reason for this delay. I just have to figure out what it is.

Maverick had an excellent gas this morning (7.39, 45), so they have decreased his pressure support to 12/5 and are now decreasing his rate by 2 every 12 hours. Curiously enough, his serum total protein level was actually low-normal this morning. That fact coupled with the normal alpha1-antitrypsan level in his stool have me wondering if the drug therapies are just taking time to work. He also had a blood alpha1 antitrypsan level drawn and sent out on Monday - it came back this evening and it was normal as well. I found an article online about the viagra this evening that talked about it taking 6 weeks for resolution of PLE.

Little Mav knew something was going on this morning. He was wide awake and would drift off to sleep and wake back up and look around. Greg and I both held him for quite awhile this morning before he went to cath lab. He really enjoys it now and doesn't even get upset when we're moving him. He just looks around like, "I know what's going on, this is snuggle time." I was able to take pics with my phone, but now I don't have the memory to send them to the blog. I'm going to have to have some help with that issue.

Keep sending your thoughts and prayers. Mav's white count was up again today - pray for no infection and for answers on Mav's condition so we will know whether or not he truly needs the procedure. Thanks so much - jc


Anonymous said...

So sorry he couldn't get the procedure done! I hadn't even thought about that aspect, I was thinking more about him tolerating the procedure and the ASD working. We'll keep praying. Love you! lp

Leigh Kimberling said...

Hey Julie & Greg, Just wanted you to know that your sweet family has been and continues to be in our prayers. God bless, Leigh Kimberling (Kim's sister-in-law)