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, June 5, 2009

What is that?

An explanation of the above picture:
Our refrigerator was a mess. It needed to be cleaned. It was going to be an all-day job and I needed help. I told the kids we were going on an adventure and we were going to see how many colonies of mold we could find in the refrigerator. Carter was all over it. He donned the gloves and wanted to be the "explorer". This moldy cucumber was his first of many finds. I think what was more troubling than the mold colonies was the McDonald's french fry that was at the back of the bottom of the fridge. It had been there for no-telling how long and it still looked perfect. I took the opportunity to tell the kids about how "real" food gets moldy, but the french fry had so many preservatives that it still looked exactly the same. I don't think I've deterred them from eating french fries, but who knows?

Here's a picture of Maddie showing off the clean fridge "Vanna style." That was our excitement for the day.Monday, Carter had a baseball game and if I can just brag a little, he had two home-runs! Here's the little guy at the game. If you notice, his hair is now short. He wanted to get it cut. He looks very handsome with it short, but I miss the long hair. I think it's just a "mom thing."

Wednesday Maddie went with a friend to a thrift store to find some cool stuff for the theme nights at Falls Creek (church camp). Carter had a friend over and Chloe followed them around. Wednesday night Sonic had free rootbeer floats, so that's where we went. The pic is of the kids enjoying them - Greg and I did, too!

Maddie leaves for camp week after next if she doesn't change her mind. She has been very hesitant about going because my procedure is the week after she gets back. She's scared something will happen to me and she'll wish she would've spent more time with me. I think it's horrible that a twelve-year-old even has thoughts like that. What do we tell her? We've told her that things should go well; however, there are always risks to any procedure. She knows that her great-grandmother coded (went into cardiac arrest) during a "routine" heart cath the month before Maverick was born. They got her back and she's fine now, but with that and Maverick as a reference point, I can see why she's concerned. I've told her I want her to enjoy her summer. If she wants to go, then she should go. If she wants to stay home, that's fine, too.

Back to Wednesday, it was a strange day for me. It was the first day since Mav passed away that I didn't cry. I know it probably sounds weird, but it makes me tear up just thinking about it. As I've become connected with the blog world of other heart moms, I've come to realize that even if he had sailed through the first surgery without any problems that wouldn't have been a guarantee of a long happy life. One sweet heart boy died last week at two years old. He awoke in the night and didn't feel well and passed away at the hospital. Another little heart warrior who was seven lost his battle recently from complications of PLE (protein-losing enteropathy - one of the complications Mav had). With congenital heart defects, you don't have any guarantees. Really, with life in general, you don't have any guarantees. My heart and prayers go out for those families. I know how tremendous their losses are.

We got the results back from Greg's stress test, and everything looks good. That is a big relief. He's in OKC tonight at a sleep lab getting set-up for CPAP. He has sleep apnea that was found at his sleep study on Sunday night. Hopefully he'll feel like a new man when he comes home tomorrow after sleeping with the CPAP. He's been so tired lately, but we're thankful his back hasn't been bothering him much.

Yesterday morning we went to the "Summer Movie" deal in Bricktown - i.e. cheap movies for kids during the summer. Last night we went to the musical, "Oliver" at Shawnee Little Theater. It was great. The kids loved it. We know several of the people in it. Our friend, Amy, and her sons, Logan and Caleb, did a wonderful job. Amy even did a perfect cartwheel. We had to "whoop" for her after it.

After we got home last night, Carter ran into the kitchen yelling, "HEY, SHE JUST BIT MY LIPSTICK!" I just cracked up. Just what a momma wants to hear from her son. He got some new flavored chapstick and Chloe found it. Sure enough, there were bite marks on it, and she still had the evidence in her mouth. Carter was not happy.

Here's a funny Chloe story. She was laying in our bed the other night and I was scratching her legs. She likes to be gently scratched when she's going to sleep. I usually scratch her back or tummy, but I was reading and her legs were easier to reach. She said, "Mom, wook, I have spwinkles." She pointed to her legs. I told her those weren't sprinkles, they were goose bumps. She looked at me and tilted her head to the side and repeated, "Goose Bumps" like she was letting those words really sink in. While this conversation was taking place, her goose bumps went away. When she realized it she said, "Do it again!" I did and then she asked, "What they called?" I thought it was so cute.

I've been thinking about NP school this week and am trying to decide how to do it. They offer a full-time program and a part-time program. They do not recommend the full-time program if you are working at all or if you have any other obligations. I think my family might count as the latter. I don't want to miss out on everything for a little over a year. So, I've sent the school an email asking if someone who has finished the full-time schedule would contact me. I think it might be helpful to ask someone who's been through it what their thoughts are. We will see what kind of response I get. I'm looking forward to school - no matter which way.

Well, enough for now. I'm going to bed. Love you all, jc


Anonymous said...

Hi Juli,

Loved your post. Glad to hear Greg's test came back okay and hope he will be able to get some good rest.

The stories about the kids always make me smile. I love the cumcumber...looks like my fridge sometimes.

Ok, here's a funny story. When Dillon was little (about 3), I got a call from the day care and the teacher told me she had been tickling Dillon a little and he was laughing and said, "Stop! You are giving me nipples!" She had to stop and wonder what she had done and what was he saying...she told him she didn't understand. He kept saying nipples and finally he pointed to his face and said these (meaning she was giving him dimples). We all had such a big laugh out of that one.

You have such cute children and you and Greg are great parents. Thanks for sharing.



Anonymous said...

Loved this post! The stories you share about your kids always make me smile. What a wonderful family. Hugs to you all!