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.

Tuesday, April 28, 2009

"Here's a flower, mommy." This was from our walk this evening.

The whole gang on the walk. Chloe was pushing her baby in the stroller, Carter rode his scooter, and Maddie jogged. Today Maddie said, "Mom, maybe in the next few years we could run a marathon together." My answer was, "Maddie, I have no intention of running a full marathon." She replied, "I have every intention of running a full marathon." Carter is looking forward to starting baseball this week. We're on a team with several of our friends' kids. His first practice is on Thursday and he can hardly wait.

Me at McDonald's getting ready to slide down the slide in the big climbing toy. Details below...

Chloe getting ready to slide.

This morning I went to a friend's house for coffee. There were six of us there. We sat and visited for several hours. Greg dropped Chloe off with me on his way to work. She had decided to stay up late like me last night and was still asleep when I left a little before nine. Before she fell asleep, she was talking about going to our friend's house. She asked what we were going to do. I said visit and have coffee. She gasped loudly then said, "Can I have some?" I said, "We'll see..." She kept asking and I finally said "Okay, you can have some." You would have thought she won the lottery. She was screaming and laughing and saying, "Yea!" She had her coffee when she got there.

After we left I had a few errands to run, then took her to McD's to get a bite for lunch. The place was desolate. It was so nice. We obviously didn't get there until after the lunch rush, so she had the entire play place to herself for awhile. She asked if I would go up with her. This is normally not my idea of fun, but there were no other screaming, running children around. I thought to myself, "Why not?" So, I put my book down, and for the first time in my adult life I climbed right up in there with her. I promptly bumped my head. Those things weren't exactly built for 5'8" adults, and I quickly learned to "duck" lower. She was proud to tell me which way to go to get to the slide, and we slid down and did it over again. I really can't remember the last time I slid on a slide. Then it was about time to pick up Maddie and Carter from school, so we left.

Not much excitement on the home front this evening. The kids and I went for a walk while Greg rested after work. Now everyone is in bed. It's nice and quiet.

Chloe is going to Mother's Day Out tomorrow and I'm going to see the nurse practitioner to get something to help me sleep. Maddie told me a few times today, "Mom, you look really tired." I'm trying my hardest to find some kind of normalcy through all this; but, honestly, it's not easy. I think about Maverick every day. The late evenings and around bedtime are especially difficult.
This morning as I was getting ready, I thought about the question I'm asked so often. "How are you doing?" My usual response is, "Oh, (pause) I'm okay." I thought to myself a better response would be, "Do you want the abbreviated, make-you-feel-good version, or do you want the truth?" The truth is, no matter how I think about this situation, I can't make sense of it. Maybe I should add "yet" to the end of that last sentence. Maybe someday I will, or I'll just quit trying. Really, I'm don't even want to verbally go into the truth with most people. I'm a person who has to think things through and make sense of everything. If something doesn't go as planned or there is a problem, I have to figure out why. The main idea I'm coming up with right now is that no matter how easy a procedure seems, things can go wrong. Going into this, I didn't expect "easy". I did know that 95% of transposition babies survive. I knew that they usually did really well. I didn't expect his heart to be as difficult as it was. All this said, this is just my way of working through things - my thinking out loud on paper. I've been looking online at different groups that support congenital heart defect awareness and/or research. I'd like to get involved with one and do something to help make a difference.
Well, I should go for now. Love you all - jc


Bill and Mary said...

Hey Juli! I love that you went down the slide with Chloe. That is awesome! You're such a great mom! I hope you are able to sleep soon. I know that none of this has been easy and that words are only that, words. But, I really do admire your strength and I know God is shining down on you. Also, about CHD groups...I am starting a chapter of It's My Heart here...I want to say we're going to be branching out to OKC, but I am not sure. Here is the website, if you're interested: God bless!

Anonymous said...

Well tell Maddie that in a couple of years, I will run a marathon with her! Always love reading your blog:) Your sister in law! Shelley