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, December 25, 2008

Merry Christmas!

Here's my wild boy today. The past two evenings he's been awake for 3-4 hours in a row. He's happy just to look around, watch his mobile and listen to whatever we have to say. We've had lots of visitors - thanks to everyone. I enjoy seeing you all.

So, here's the scoop on how he's doing. Yesterday evening he started breathing a little too fast for him. His temp was 37.4. He's been getting a little warm since a few days before we left Dallas, but I had been attributing it to the fact that he's now wearing clothes and he was just getting too hot - especially if I put a hat on him. He's mostly just had his diaper on since he's been born. Hmmm... The nurse tells me his white count was up - up to 20. I ask what his CRP was but they hadn't done one. I told the nurse I was worried he might be getting an infection, so the resident came in and we talked. I told her Maverick has been extremely sick before, but has never had a fever. So, they cultured him and he's growing gram negative rods - already. They started miropenum and vanc, then added gent this evening. They drew another culture from his arterial line after the first dose of antibiotics to see if it still came back positive - if it did they would pull the arterial line out. They pulled the art line out this evening. It grew that quickly. They drew a CRP yesterday evening when they got the cultures - 116. Yes, 116. I had to clarify - not 16? No. Today it was 170-something, but his white count came down to 15. He's not really acting sick other than occasionally being a little warmer than normal, (he's usually around 36.5) like 37.0-37.4, and being tachypneic. I've just been keeping a close eye on him... So, my fear? The questionable endocarditis a few weeks ago was actually endocarditis and wasn't treated for long enough due to no positive cultures. He's getting an echo tomorrow to check for any vegetation. We'll see what happens. He's a strong little guy and doesn't even seem to notice he's sick. They upped his vent rate to 20, but have turned it down to 18. His gases remained great, they just wanted to reduce his work of breathing. Say some prayers that he'll respond quickly and this won't set him back too much. He's had several good days lately.

On to Christmas, the kids enjoyed the day. Greg has had a virus and was laid up in bed. The kids and I went to the hospital to see Mav and then went to my grandparents house for lunch. Then Maddie and I went back up to the hospital and just got back home. I'm tired. I was thinking about the story of Christmas from a mother's point of view. I've had such a difficult time dealing with the "what ifs" with Maverick these past few months. I can't imagine having a son, knowing that someday he would be crucified for others sins - and having to watch it take place. Just something to think about.

Thank you all so much for your continued support, prayers, and generosity. Love you all - jc

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