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, August 28, 2009

Sweet kids

Once again, the week has flown by. The pics of the kids were from last weekend. They had sooo much fun playing outside on the "Belly Slide" - as Chloe calls it. We found a recipe on the internet for body paint, so we made some and that just added to the slippery-ness of the slide. It was cheap entertainment. They played outside for a couple of hours. Chloe wanted a butterfly on her back (the purple paint didn't turn out so purple).




Here they are with the paint. If you're interested it was 1/4 c. dishsoap, 2T cornstarch - stir together until smooth, then add food coloring. I made sure to tell them to keep it away from their eyes. After making it, I thought of using baby shampoo as an alternative. We'll try that next time.

Here's a video. They're all painted up and having fun.
video


I experimented on our dog, BamBam this week and gave him a haircut. He didn't seem to mind too much. His haircuts cost more than mine, so I decided to give it a try.

When I haven't been busy with the kids or Greg or the dog, I've been doing homework and studying. Some of my assignments are due at the end of next week, and I wanted to finish them before I leave for Alabama on Sunday. I'll come back on Thursday. Two of my friends, Amy and Dejah are going with me. The beach isn't far away, so they'll get to soak up some sun while I'm sitting in class. I'm supposed to be finished by 5 or 6:00 every evening, so I'm hoping to see the beach at some point while we're there - that's why I wanted to finish the assignments early. One friend asked me who would be taking care of the kids while I was gone. I said, "Greg." She acted suprised and said her husband wouldn't do that. Greg was taking care of Maddie, Carter, and Chloe for 24 hours at a time when Chloe was six-weeks old. That's when I went back to work. He's a very capable daddy.

Speaking of work, I may start looking for something part-time after I return from Mobile. I have a few things to check into when I get home.

While I'm gone, Chloe will start Mother's day out and both the girls will start dance. They are both so excited. Chloe's been putting on her dance clothes and dancing on the window seat in our bay window - it's her stage. She's such a ham. The girls have also become my study-buddies. I was watching several physical exams on infants this evening on the internet and had the earphones plugged into the computer. The kids had the Disney channel on, but Chloe wanted to sit beside me watch the exams. She put in one of my earphones and watched with me for about 30 minutes. Earlier this evening, I was looking at an amazing site on the heart and Maddie sat with me and asked questions while I went over that info. Maddie asked if she would learn this stuff (about the heart) in the eighth grade. "Ummm, no." I told her. "Maybe when you go to college." It's amazing how curious and ready to learn kids are.

Carter found a new spot to read this evening. He's not really fond of reading, but I guess it's more fun if you're up in a tree. He had climbed up pretty high in the magnolia tree in our backyard. That's where I found him when it was time for dinner. As long as it makes him happy and helps him enjoy reading - I'm all for it.

I spoke with one of our favorite nurses on the phone this evening. It was so nice to hear her voice. She became like family to us. She told me about a dream she had a few nights ago about Mav. She said he was sitting up in his hospital bed laughing - he had his monkey. No tubes - she said she was playing with him. Soooo sweet. I miss our sweet boy. Here's a pic of him and his daddy from Greg's phone.

Well, enough for tonight. Have a good weekend. Love you all, jc

Saturday, August 22, 2009

Whew! This week has been a whirlwind. It was the kids first full week of school and mine as well. We have been very busy. Maddie is enjoying school. Carter is enjoying recess. Chloe enjoys having me to herself. This afternoon she said something about wanting to go with me to take the kids to school tomorrow - which by now is today. I told her tomorrow was Saturday and they don't go on Saturday. She got a disappointed look on her face. I asked her if she was upset they weren't going to school and she shook her head yes. She's kept me smiling. A couple days ago I asked her what she wanted to eat for breakfast. I gave her four choices and held up four fingers (breakfast bar, cereal, waffle, or toast). She looked at me and slightly squinted her eyes and said, "What's that one?" as she pointed to my thumb. I said "That's not one," and went through the choices again. She said, "I know what that one is..." and then went on, "I would defeee (definitely) eat a pupcake (cupcake)." I couldn't help but laugh.



She and Carter have been having fun playing in the water after school. They put our old slip-and-slide at the bottom of a slide. They call it the "belly slide." I caught Chloe lathering up out there the other evening. She snuck in the house and took the shampoo outside.



Maddie and Chloe signed up for dance this week. They are both looking forward to it. They start the first week of September. That's when Chloe will start mother's day out. I'll be gone to Mobile Sun-Thurs of that week for orientation for the clinical component of the nursing program.



We finished up Maddie's furniture last weekend. We're going to get it arranged in her room this weekend. I'm sure she'll put some pics of it on her blog. She did a great job on it.



Reading, studying, writing papers and doing quizzes is consuming all my extra time - and it's only the first week of school. It's a good kind of busy, though. In my studying I'm coming across many things that take my mind back to Mav - different lab values, heart defects, renal issues. I think about him a lot. It's nice to know that someday soon I'll be able to do more to help other kids who may be in similar circumstances. I had to write a paper on my personal philosophy of nursing this week. His life has made a huge impact on that aspect of my career. When I get it completely finished and turned in I'll post it for you all to read.


Isn't this sweet? This is a picture I downloaded from Greg's phone. He had so many pictures on his phone that we hadn't transferred until a week ago. It is one of my favorites. We still have some on the camcorder that we haven't even looked at yet. Maybe soon. Mav's birthday is coming up soon. It's so hard to believe it's almost been a year since he was born. We're still trying to decide what we want to do. I know it will be a tough day, so we may just keep it simple.
I think we might release some balloons at the cemetery.


Greg is staying busy with work. His back is still bothering him. We're waiting to find out if the insurance will cover a pain pacemaker. It's an electrical stimulation unit that works by blocking the transmission of the painful stimuli from his back to his brain. Hopefully, it will be approved and give him some extra relief.

Hope you all have a good weekend. Love you all, jc

Friday, August 14, 2009

Quick update

Just a quick update to let everyone know Maddie's biopsy results were fine. Thanks for your prayers. This is a relief.

Wednesday, August 12, 2009

First Day of School

It's hard to believe we have a seventh grader and a third grader. They were ready to go this morning.
Here we are at the school. I take this same picture every year. The kids tolerated it pretty well.

Carter at his desk - ready for the day.
Maddie at her locker. Notice the wrapping paper on the door for decoration.

Where was Chloe? She was at home snoozing. Greg stayed home so she could sleep a little later while I took the kids to school. I took this after I got back. We had a good day together. We didn't go to Benedict Street today - maybe Friday.
The kids both had a good day at school. We didn't get the results from Maddie's biopsy today. When I called they said they weren't in yet and they would call me back on Friday. Just a quick post for today. More later. Love you all, jc





Tuesday, August 11, 2009

Quiet.

Quiet. That describes the house tonight. The first day of school is tomorrow. We're all inching back into a routine. The kids were all in bed by 8:40pm. I don't remember the last time that happened. It's nice, but also well, just quiet.

The past few days have been spent preparing for tomorrow. Monday was "Carter's day." We spent the morning with the girls and grandma (Greg's mom) - our SUV had tire issues so we didn't have a vehicle until the afternoon. We had lunch together and by that time the vehicle was ready. Carter wanted to go to the skate park. We went to Kidspace here in Shawnee and stayed about an hour. It was hot, but he was having a lot of fun. We stayed until I got the creeps. An older man showed up on a bike and started riding the ramps with the kids. I just didn't have a good feeling about the situation, so we left. There were some other adults around, but seriously, if you have a child, please don't drop them off at the park or let them go by themselves. Your kids are too precious to let something happen to them.

I thought I had heard that the nearby town of Tecumseh had a skate park, so we went there. They had a nice one and we were the only people there. C-man had a good day.

Today I meant to get up early to do a trial-run for school, but it didn't happen. I couldn't get to sleep last night, so I slept in this morning. Greg got up and ready for work and brought us home breakfast from Braum's. He went to work and we stayed here for a while and enjoyed a visit from my dad and grandma. Then we went to the school so Maddie could fix-up her locker. After that we made a shopping run to try to find shoes for Maddie for school. Nothing like waiting til the last minute. We wrapped up the afternoon with snow cones.

Tonight was back-to-school night. Carter found his classroom and his desk and talked to his teacher. I think we're going to have a great year. He seems excited about going back. Maddie knew all her teachers from last year, so not much excitement from her. I think Chloe would probably fit right into the pre-K class, but her birthday is Sept. 29 so she she doesn't start until next year.

I told Chloe that it would just be me and her for a while. Her mother's day out doesn't start until Sept. 1. I asked her if she was going to miss Maddie and Carter when they started back to school.
Her reply, "Maybe just a tiny bit" as she pinched her thumb and forefinger together with only a tiny space to keep them from touching. She later asked me if she could have a day after the kids went back to school. She said, "Maybe we could go to Benec Stweet." If you don't already know, Benedict Street is our favorite place for lunch - and she loves the little cups of coffee. I said, "Maybe."

While sitting awake last night I decided to start reading another book. I found this one while going through stuff for the garage sale. I bought it several years ago at a Christian women's convention and had started reading it, but for whatever reason it didn't grab my attention. It's grabbing it now. The name of the book is "Fresh-Brewed Life" by Nicole Johnson. I'm in a coffee kick now, so the title is fitting. I actually got up from my chair at two in the morning to find a highlighter to mark in this book. I've never been someone to mark in books, so for me this is big. I've really been struggling with the loss of Mav and feel kind of stuck. I know what path I'm taking next, but I feel spiritually stuck. I feel betrayed. I feel like I had all the faith in the world that Mav would be healed and I was let down. I was crushed - I am crushed. One year ago I expected to be toting a baby boy along with us tomorrow on the first day of school - an eleven-month-old to be exact. Eleven months tomorrow. My plan was not God's plan. I don't know why. I've read books and listened to sermons that make me feel better for awhile, but I know this is going to be a long process - a life-long process.

Back to the book... The first thing I highlighted followed a story about a woman sunbathing on the roof of a hotel. She decided no one could see her up there, so she slipped out of her bathing suit for a better tan. The assistant manager of the hotel was out of breath after running the stairs to inform her that she was lying on the dining room skylight. Here's the following paragraph - parts of it I highlighted:

"Talk about exposed! It's terrifying until you realize one thing: when you're naked, you've got nothing to hide anymore. When you're empty, you have nothing else to be taken away. When you tell the truth, it sets you free. So, I made my decision to stop pretending."

As we've been going through life without Mav I've found myself pretending frequently. Pretending everything is okay. Some days are better than others, but I miss my baby. Greg misses his son - he's mad and I'm sad. I'm not saying our life is horrible now. You can look at the pictures of our other beautiful kids to know we're blessed. Life is so different now, though. What's been hard for me to realize through the years is that people are pretending everyday. They pretend their lives are fine, hiding their flaws or struggles from everyone around them. I have been naive enough to believe them in the past and have wondered why our lives aren't as perfect as theirs. When the truth comes out, you realize everyone is "normal" until you get to know them.

The next highlighted area of the book is as follows:
"The darker the roast of the coffee, the more intense the flavor. It stands to reason that for a rich, strong life, we are going to have to go through the fire."

It then goes on to reference 1 Peter 1:3,6-7:

"In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials." These trials have come, the Scripture says, "so that your faith - of greater worth than gold, which perishes even though refined by fire - may be proved genuine." This genuine, refined by fire, holding-on-for-dear-life faith will result in praise and glory to Christ.
We are the beloved of God. We will go through trials, but we can submit to them so that our faith, the most precious thing we have, may be authentic. When people see our lives, they know we are honest people. Suffering makes us real, and that brings glory to God.

I'm holding these scriptures close right now and I love the way this book presents them. Well, it's late again. I'll try to update tomorrow with our annual "First Day of School" pictures. We should find out about Maddie's biopsy results tomorrow as well. Love you all, jc

Sunday, August 9, 2009

We've had a good weekend. Friday evening we went over to Greg's Aunt Sheila and Uncle Bob's house for a cookout. Most of the people from his dad's side of the family were there. Unfortunately, we haven't gotten together with all of them in several years. We had a wonderful time and I'd like to think little Mav played a part in making it happen. When he was in the hospital several of our relatives from Greg's side of the family came to sit with Mav in the evenings at the hospital. We've all become much closer since. I've loved getting to know them all - they're wonderful people. The kids had a great time playing with their cousins. I remember playing with my cousins as a child and what fun it was. I want that for the kids.

There were two sweet babies there - both were Sheila and Bob's grandchildren. Chloe tried to take over the care of little Kayleigh. Little Cooper was tired and was trying to go to sleep, so he was off the hook. Chloe got in on K's bath and fed her a bottle and helped put her in her jammies. She (Chloe) enjoyed it sooo much. Thanks to her parents Kasey and Paul for being so tolerant of her "help." Little K seemed to be okay with it, too.

Chloe helping with the bath - Miss K wasn't having such a great time at this moment.

Little Miss K loved Maddie's sparkly shirt.

Cooper is the son of Jill and Justin. They live in Texas and Justin visited us and little Mav a lot while he was in the hospital. It was great to see them and their sweet baby boy. This was the first time we got to meet both the babies. Thanks so much to Bob and Sheila for hosting the event. We really enjoyed it.

Greg with baby Cooper.

I think Carter wore Justin out. They played "washers."

Saturday was spent working on Maddie's desk and cleaning up Chloe's room. I'm still trying to get stuff ready for a garage sale. Hopefully I'll be ready this weekend. That may be a bit ambitious - we'll see. The pile in the garage is definitely growing.

I had a hard time getting to sleep last night, so we slept in this morning. Tonight is the last night the kids are staying up late. We'll try to get everyone (myself included) back into a routine before school starts on Wednesday.

The girls and I went to a wedding shower this afternoon. Greg and Carter had some male bonding time. C-man and I are having some time together tomorrow. When Maddie and I got home the other day from our "girls day" he asked when we could have our day together. Awww - isn't that sweet? So, tomorrow is our day and I'm sure we'll spend most of it at the skate park. I haven't looked at the weather, but I hope it's not as hot tomorrow as it was today.

I just finished reading the Sunday paper. There was an article about a patient in London who received a heart transplant at five months old. They left her original heart in hoping that the new heart would allow her own heart time to heal (she had two hearts in her chest). They've recently removed the donated heart and her heart is functioning well and has healed. She's now sixteen and is playing sports and living a normal life. I hope someday there are even more options for babies with sick hearts. Here's a link to the story if you're interested.http://www.wtopnews.com/?nid=106&sid=1717022

Here's a sweet video of our sweet baby Mav.

video

Thursday, August 6, 2009

Yesterday was five months and twelve days since Mav passed. The same amount of time he was alive. So, today it's official, he's been gone longer than we had him with us. I know I shouldn't get hung up on days like that, but it's so hard not to. I miss him so much.


Tuesday one of my friends came over to help me get some things organized and cleaned out for the garage sale. We went through Carter's closet. Actually, she went through Carter's closet. A lot of Mav's clothes are still in there. She put them all in one drawer together. We both cried. It was nice to have someone to cry with. It was nice to hear she missed him and she didn't understand why either.

Yesterday Maddie had her biopsy done in Edmond. The oral surgeon didn't think it was anything to worry about, but I'm supposed to call next Wednesday for the pathology results. Since we were there and didn't have Carter and Chloe with us we made a day of it. Every year before school starts we have an annual Girls' Day. We did a little back-to-school shopping and had lunch together. We had orders from the oral surgeon's office to have something cold - that meant Baskin Robbins again for Maddie. She's doing fine today and hasn't complained about her mouth at all.


I can't believe the kids start school in 6 days. This summer has flown by. I'm really not ready for the kids to go back to school yet. I ordered my textbooks for nurse practitioner school tonight. I'll start school on the 17th. I'm ready. I just need to get a few more things completed around here.

Today we cooked a lot. I don't know what's gotten into me, but I decided to make bread. Real homemade bread with yeast and everything. It turned out perfect and I was astonished. So were the kids. Maddie made homemade granola bars that were great. We also made Ms. G's famous ham. It turned out perfect. Maybe I'm not such a bad cook after all...

Love you all, jc

Monday, August 3, 2009

"It smells like Baby Maverick..."

"It smells like Baby Maverick out here," I heard Chloe say as we were getting out of the truck late tonight. She's my child who always smells everything. She'll smell your breath and ask if you've been eating "x" and she's usually right. She'll smell perfume on someone walking by in a store and say, "She smells like grandma." She has a very sensitive sense of smell. It caught me off guard when she said this. We had just driven outside of Shawnee to pick up Carter. He decided late this evening that he didn't want to stay at his friend's house for a second night. It was dark outside, but the light of the full moon was bright enough for me to see her looking up at the sky and breathing in deeply to capture the scent. She said it again and again as she spun around on the driveway with her arms outstretched, looking up at the stars. I finally said,"Maybe he's telling you goodnight." She looked at me for a moment then looked back up and started spinning around again yelling, "Goodnight Maverick! Goodnight Maverick! I love you!" Then I said it too with a tear in my eye.

I'm continuing to work on cleaning and de-cluttering. I'm getting closer. I may call for some help tomorrow - my friend, Dianna wanted to come over tomorrow so the boys could play. She's good at organizing things and I'm not. I know my weaknesses and that's one of them. That play date may help me get a lot accomplished - get ready Ms. Di.

Maddie's still working on her room. We found a desk at a thrift store the other day for $14.98. It needed sanding and painting. I taught her how to use the palm sander and she's been tackling that task. She enjoys learning how to do things and likes to do them herself. She'll be well equipped for the real world someday. I'm so proud of her. I'm so proud of all of them, it's fun to watch them learn new things and grow up. I just wish time would go by a little bit slower.

Maddie, Chloe and I went to Edmond today for an appointment (Carter was at his friend's house). Maddie had a dark spot show up on her palate (the roof of her mouth), so our dentist wanted her to see an oral surgeon. He thinks it's just a "freckle," but just to be sure we're having a biopsy done on Wednesday. They'll send it off for pathology and we should know something in a week. Keep her in your prayers. Our dentist told us the chance of it being something bad was "like the chance of winning the lottery... But someone has to win the lottery." With our luck in the past year I wonder if maybe I should start buying lottery tickets, hmmmm.

While we were sitting in the waiting area, Maddie was skimming through an Edmond magazine. She spotted an ad for Baskin Robbins and about went wild. She loves Baskin Robbins and has since our trip to Colorado several years ago. They're kind of hard to find in Oklahoma. She pleaded to go by there before we went home, so we did. That made their day. Chloe wanted to bring home an ice cream cake. I kept telling her that it would melt by the time we made it home. She tried to talk me into it by saying that we could eat it quickly on the way home. She's such a funny little mess. I would have taken a picture, but my phone is having technical difficulties.

I guess my phone finally got tired of being dropped. Now whenever someone calls, they can't hear me very well. To demonstrate, Maddie called me from my phone and her voice was so garbled, it was difficult to figure out what she was saying. We had an extra phone here, so I put my SIM card in it. It takes pics, but they're horribly blurry. There's also not a complete keyboard for texting, so I am handicapped when I try to text. It takes me forever. Greg just let me know my contract is up so I can go in anytime and get a new phone. I would really like another one like my old one (Blackjack). I had just learned how to do most of the things I needed. Greg says there are so many nicer ones out now. I need something fairly easy. I just read over this paragraph and I sound whiny. It's hard to believe that we used to get along just fine without cell phones. Do you remember the very first ones that looked like you were carrying around a brick? I remember going into a store with a guy I was dating when cell phones just came out. He walked around that store talking on his brick-like phone and I remember thinking "What a dork. He's trying to impress everyone with his new technology." That was obviously BG (before Greg). He would have never done that. Now everyone, myself included, do it.

Speaking of my hubby, his legs are really bothering him. He's now having some numbness and pain in his legs and feet. It's due to his back, but these symptoms have just started in the past couple of weeks. Keep him in your prayers, too.

Love you all, jc