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.

Friday, December 5, 2008

Mav is doing well today. They tried to wean his vent a little too quickly for his liking and they had to back off a little. His CRP is back down to <.2. The last BUN that I knew of was in the 30's and his creatinine was 1.3. Greg made it back down there and is enjoying spending time with Mav. He's been doing his therapy thing tonight and really working him over. They gave him some morphine and he was sleeping while Greg was working on him, but he'll probably be pretty sore tomorrow. His muscles in his legs are so tight and his little arms only go up about as much as the other Maverick's (John McCain) - and no that's not why we named him that. I didn't even know that was his nickname until I saw it on a commercial during the election. Greg is supposed to be sending some pics and video to the blog, so I'll post those when I get them.

The kids and I are enjoying our time together. My sister, Heather, came to Shawnee from OKC today and we went out to lunch with Chloe. She brought the kids their Christmas presents since we don't know where or when we'll be having Christmas - and being the softee that she is, she let them open them early. They really enjoyed that. We played Christmas music and I put the Christmas tree up today. I love Christmas music. My favorite song is "Here Comes Santa Clause" with Gene Autry singing. We have this crazy tradition of having a white tree - not like a white flocked tree or even a solid white tree. It is a white wire tree that is actually made for outdoors. I bought it one year when we were getting ready to move and I didn't want to try to find my green tree in storage. I thought if I bought an outdoor tree, the next year we could use it outdoors and I would use the green one indoors. The next year rolled around and everyone - including Greg wanted to use the white tree again. So, this is the fifth year of the white wire tree... Kind of crazy, but we love it. We haven't actually decorated it yet, but maybe tomorrow. We have breakfast with Santa tomorrow at Maddie and Carter's school. It's an annual tradition and we've only missed it once. They really enjoy it and we always get their picture taken with Santa and I think it's always been the same Santa. I have some with Maddie, then Maddie and Carter, then Maddie, Carter and Chloe. If Mav was home, he would be in this year's pic (Ok, so I really wouldn't take him out into a crowd with all that he's been through, but you know what I mean). That makes me sad that he's not home, yet. I think we're getting closer, though. My last day there I spoke with Dr. Mendeloff and Dr. Chemelli about getting Mav home as quickly as possible - like sometime soon after he's off the vent.

I know a lot of you know Greg and I, but I'm quickly becoming aware that an increasing number of people reading this don't really know us at all. Greg is a physical therapist and I'm a Mediflight neonatal transport nurse. How bizarre is that? God knew that we would be able to take care of him. He's still going to have to learn how to eat and he'll have to have a lot of therapy to get him to where he should be since he's lost so much of his muscle tone. He may have to go home on some oxygen, we'll just have to see. If his kidneys don't kick in, then we'll be going home on dialysis, too. But, because of our backgrounds, we'll be able to do these things at home instead of having to stay in the hospital for several more months. The doctors are onboard with this plan. It won't be immediately after he's extubated, but hopefully it won't be more than a few more weeks after that. Greg and I were talking that this has been one of the best weeks - even in the midst of the kidney issues and everything else. It just seems like now we have some hope for getting Mav home and our family back together. I won't say back to normal... I think we'll have a new definition of normal, but that's ok. I'll post more tomorrow - Love you all - jc

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