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 22, 2009

Almost a smile

What a sweet baby boy. He looks like he's about to smile in this one from today. He looks a little better today and was acting like he felt better. Ok, so here is my official apology. I'm sorry and I was wrong. The sensitivity came back from the pseudomonas (the bacterial that's growing in his lungs) and it is sensitive to the antibiotics he's on right now - that means he on the correct antibiotics. But it is a different psuedomonas than what he had earlier this month - or it's just become resistant to more antibiotics. Nevertheless, his white count was down to 24 today. His CRP is still 2, and he had another fever today. His peak pressures on his vent are lower and his gases are better. I don't know what to think. I'm just glad he's not getting worse. So, some good news - he's on the lowest % of dialysis fluid and he's still getting enough off. They changed his dialysis to 60mls today and 2 hour cycles. He has to have at least 60mls to be switched from manual dialysis to the cycler (the machine that we can go home on). So, if all goes well for the next day or so they will be switching him to the cycler soon. That's one step closer to going home. They went up on his ventilator rate a little last night, but went back down today. He should be in the teens on his rate sometime tomorrow if all goes well. He's tolerating his continuous feedings well, but his little bottom is worse. We're trying a new cream on it today. I'm just so ready to get him home. On the way to the hospital today I was making a mental list of the things that need to happen for us to go home. The ventilator is a big one. Thanks for the prayers. More tomorrow - jc


Anonymous said...

Oh my gosh...those eyelashes are long! I know you've talked about them but never saw them until this picture. What a cutie Mav is!

Juli, I want you to know how I appreciate your blog. I know you have a lot on your mind and so, so busy. It's just wonderful that you take the time to let us all know how you all are doing.

Baby, baby steps. Mav's made some great strides. Hang in there. Continuing prayers.


Lindsay said...

Awww.... that is almost a smile! I'm glad Mav is feeling better.