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.

Sunday, October 25, 2009

Twenty years ago - that sounds like a long time, but seems like yesterday. This weekend was our 20 year highschool reunion. This one was with my friends from Crescent. I actually didn't graduate there, but was there from fifth grade through my junior year. I still have friends I keep in contact with from there. It was a weekend long ordeal, but I just met up with everyone on Saturday night. I had so much fun seeing and talking with everyone who showed up - they all looked the same. There wasn't one person I didn't recognize. It was interesting to see how different everyone's lives are. One classmate has a 20 year-old daughter, and at the other end of the spectrum are those who haven't started families yet. I'm pretty sure Mav would have been the youngest baby... sigh.

The weeks have been flying by lately. GYN clinicals are finished now and I start pediatric clinicals this week. I think I'll enjoy them. Tomorrow my mom and Brown are flying in. They'll be here for the night and leave on Tuesday. I'm glad we'll get to see them, even if it's only for a little while. I'll start the peds clinicals on Tuesday. Wednesday will be an exciting day. I have a meeting with some important people to talk about donating the money you all raised in memory of Maverick. I can't say much now - because really I don't know much, but I should know more after the meeting. Thursday is another clinical day and Friday will probably be spent trying to get assignments ready for next week. Throw in a few fall parties at the school and family pics Wednesday evening and the week should be pretty interesting.

I'll share more later - I've got to go to bed. Love you all - jc

Thursday, October 15, 2009

October 15th

Today is Pregnancy and Infant Loss Rememberance Day. We lit a candle for Mav at 7:00pm tonight. They call it the wave of light. Everyone lights a candle at 7pm in their time zone in rememberance of the baby they lost - it ends up creating a wave of lit candles around the world. The website is http://www.october15th.com/ if you're interested or curious. Here's a video of our sweet boy. We don't need a special day to remember him, though - we remember him everyday. I just thought it was a nice sentiment, so we participated.
video

Things are about the same around here. Kids continue to spread germs around. Maddie was sick for several days last week. She's my handwashing germophobe, so if she got it, it must be easily caught. Greg and I have missed out on the sickness so far - thank goodness. We don't have time to be sick right now.

Update on situations: Greg had his pain pacemaker placed and taken out. He thought it helped, so he'll have a permanent one placed later in the month. My grandma met with the surgeon who thought she would be a good candidate for a lumpectomy, but things are moving painfully slow with this process. She has to have an MRI and see the oncologist, then go back to the surgeon. Baby Ian died (the friend of one of my heart-mom-friends). I've read her caring bridge site and hurt for her and her husband. It's such a difficult time - and still is. Say some extra prayers for them. Our uncle is in Texas now undergoing treatment for his cancer. He should be back in a few days. We're praying all goes well and he doesn't get very sick.

Greg was cleaning around the house this evening while I was finishing a project for school. He found the CD from Mav's funeral and we listened to it. Even without seeing it, I could still picture it all in my mind so vividly. Todd did a great job on the sermon. I think it was a good day to hear it again - that message is still so applicable to everything we're going through. He later found the DVD and watched it - I might later. We still need to download more pics and videos from the camcorder. The first time we used it since Mav died was for Chloe's birthday party.

I started clinicals this week and I've enjoyed them. I'm with Dr. J, an ob/gyn. He's my friend Amy's husband. I've really enjoyed talking to the women, and learning all these things that are new to me. Maddie has been curiously appalled by this rotation. Eventhough she says she wants to be an OB when she grows up, I don't think she realized that would entail "well-woman visits" - if you know what I mean. It will be completely different in a few weeks when I have sick kiddos screaming at me...

Maddie and Carter are on fall break now. Their last day of school was on Tuesday. They are glad to be home. I was glad to sleep in a bit this morning. We really don't have any great plans for the break. I'm hoping the weather clears up - I'm ready to see the sun again. We usually go to the pumpkin patch down the street and take pictures around this time. If the weather will cooperate, maybe we'll do it this weekend. Hope you all have a good weekend - love you all, jc

Tuesday, October 6, 2009

More birthday pics

Guess where she wanted to go for breakfast on her birthday? Yes, we're at Starbucks. She got a Starbucks card as a birthday gift and was very excited. I got her something different this time though and she wasn't too thrilled with it - she said, "it has too much sugah." I didn't think there was such a thing.

Of course I didn't mind going and she had to take a picture of me if I was taking one of her.
Grandma and Papaw came over for cake the evening of her "real" birthday.

Here are a few more birthday pics - from her "real" birthday as opposed to her "fake" birthday. That's what she kept asking about the day of the party with her friends, "Is this my real birthday or my fake birthday?"

She was very tired at the end of the day and passed out with her heating pad and her baby.

Chloe's Birthday Pics

Us with the birthday girl


The birthday girl

The birthday party spot - our favorite - Benedict Street. Little miss didn't want any balloons - she now has a phobia of balloons, so we found these poofs to hang.

Busy crafting.
Lots of friends and fun
Here are some pics from little Miss C's birthday. She had such a great time. Thanks to everyone for coming. She made me smile several times today - they all made me smile, but at this age she has such an active imagination. After I picked her up from Mother's Day Out, she disappeared into the house. I was sitting at the kitchen table working on my paper and here she came dressed in scrubs with a stethescope around her neck. She peeked her head into the kitchen and said, "Julianne." I said, "what, baby?" She said, "I'm not baby, I'm the doctor." I carried on the conversation with her and asked her what kind of doctor she was. She said, "The kind that helps you push the baby out." OK, then. I went into her "office" and told her I didn't like shots. She said she would give me medicine to make me go to sleep and it wouldn't hurt. She wanted to give me two pills, then changed her mind and said, "Ashlee (actually) five pills." Then I pretended to be asleep while she pretended to cut my belly open. Such an imagination...

Onto a real doctor subject, we finally received the "ok" from the insurance company for the pain pacemaker for Greg's back. The appointment for the temporary one is tomorrow. Say a prayer that all goes well. If it works, he'll have a more permanent one placed sometime later.

I have a few more special requests this evening. My grandma on my dad's side has just been diagnosed with breast cancer and will be meeting with the surgeon soon. We have an uncle on Greg's side with cancer as well. A fellow heart mom, Vanessa (Owen's mom from the cute balloon pics) has a friend with a very sick little one. He has tetralogy of fallot and another serious medical problem. They have a caring bridge site at http://www.caringbridge.org/visit/ianandyellis if you want to offer them any encouragement. Sorry for all the negative news, there are just several people who need prayers tonight.
I better go for now - more studying to do for a genetics exam. I've always enjoyed genetics. At least my theory paper is finished and has been submitted - that's a big relief. Love you all, jc

Sunday, October 4, 2009

More balloons

I'm taking a break from studying. Only so much a person can do in one evening without going completely insane. The house is quiet - except for the sound of Carter's cough. The kids have been passing it around for the past week or so. I thought I'd post some more balloon pics. Thank you all so much for sending them. These are from friends of my step-mom, Teresa. They work at Children's Miracle Network.

Their balloons did much better than ours.


Here's my sister, Heather, and baby Addie. I couldn't enlarge the pic without it being too "pixelated" - is that a word?



These pics are from Justin and Jill. They're our cousins on Greg's side of the family. Justin is a youth pastor in Texas and came by to check on us and Mav frequently while we were in Dallas. I had to post the message he sent along with the pictures. It brought tears to my eyes.


Greg and Juli,
I had the privilege of sharing Mav's story with our students tonight. We talked about how compassion and love enable us to leave a mark on our world. I was amazed today when I began thinking how Mav left an indelible mark on this world and how his sweet spirit echoes here and in eternity. We wanted to take the opportunity to be involved in the balloon release so attached are pictures of the group, Ryan (who was in the hospital the same time as Mav), and the balloons floating across Princeton. Thanks for sharing your lessons with us through the blog and for giving us the chance to share in the celebrations of his life of impact.

Sincerely,

Justin and Jill

I was just tagged on facebook with this picture. My blog-friend, Mary helped start up the Michigan chapter of It's My Heart. They did their first heart walk recently - here's a copy of the back of their shirt - little Mav's name is on it.



Thanks, Mary.


This past week I had the opportunity to speak with an Oklahoma City radio station for a pre-recorded interview for Children's Miracle Network's upcoming radio-a-thon. I met them at Children's in the lobby and told them about Maverick. The other people that were there to do interviews had their miracle kids with them. I explained to the guys that I was the other side of the story - that not all the little miracles get to go home. I thought I could be strong and talk about it, but I cried a little. After I left, I thought about all the things I wish I would have said - like telling more about Maverick not just his medical conditions. I wish I would have mentioned his big blue eyes and long eyelashes, and how he liked his monkey and his mobile. Oh, well. I guess the point of my story is that more money needs to be raised for research for congenital heart defects and for new treatment options. Hopefully that point will make it across to the listeners if they decide to air it.

Since I've last written, Chloe has had a birthday. She's now four years old. Time flies. I still need to download the pics from her party, so I'll post them in the next few days.
Well, it's getting late and I need to go to bed. I have a paper to get finished in the next few days. It's for Nursing Theory and is a concept analysis on "adaptation." I think I have plenty of life experiences to understand that concept. Love you all, jc