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.

Wednesday, November 25, 2009


I can't believe it's been this long since I've written. School has kept me so busy. I seriously don't know what I would do if I wasn't in school right now. Of course, I'd probably be working, but I'm glad I'm this busy. It's still hard when I'm not. So much has happened, and I've been wanting to write, but it's been hard to find the time. The kids are doing well. Maddie is dancing, Carter's grades are improving, and Chloe is being Chloe. Greg is doing okay. Some days are great, others aren't. His back is still bothering him some, but it seems like the days are father between. He's decided not to do the internal pain pacemaker now. He's going to hold out for a while and see how things go.

My semester is over in less than two week. One down, three to go. I can't wait to get out. I had a little down time this evening after finishing a test, so the kids and I started getting Christmas decorations out. I've had a few moments and can tell the holidays are going to be a bit difficult.

Last week I went to lunch with Ms. M - she was one of Mav's nurses here in Oklahoma. We really bonded with her and just love her to pieces. It was good to chat. We talked about life in general and little Mav. I had a bit of extra time prior to meeting her for lunch, so I stopped by Target and looked at the Christmas stuff. I was looking for a white wire tree - long story - but they didn't have one. While looking around I went down the ornament aisle. We usually get the kids an ornament every year - I saw all the little baby ornaments and they made me sad. Do I still get an ornament for Mav? I probably will. Maddie asked me a few weeks ago if we could put up Mav's stocking... How are you supposed to handle all this? There is no instruction book. There isn't even a "right" way of doing things. I guess we'll just figure it out as we go along.

We're still trying to figure out what to do about Mav's headstone. The dimensions we were given were the ones I used to draw out the design for it. The company finalized the design and then we found out the dimensions we were given were wrong and it is too big and too heavy. Too heavy? That's really something I've never thought about - really, no one should ever have to think about something like that, uggh, it just makes me sick. The cemetery said they would let us do it that size since we were given the wrong information - it's been suggested we pier the headstone. We're just taking a breather right now. We don't know what we should do.

We still haven't heard from anyone at Children's about the ideas for the money. I'll update as soon as I get some feedback.

Something interesting happened this week. I have finally gotten to the place where I can start reading my Bible again (that's not the interesting part). I've started a new book/Bible study titled, "Tune In" by Jen Hatmaker. It's about hearing God. I've had a hard time with that topic since Mav died, because I really thought He was letting me know Mav would get better. I was wrong. Anyway, I was praying one night that God would just give me some kind of sign and make it very clear that things are going to be okay, that He's still here with me, and that Mav is happy and okay. The next day I had to make a trip to Oklahoma City to run an errand and I was thinking about Mav and listening to the radio. I was driving in the passing lane on the highway and thought I say the word "Mav" out of the corner of my eye. I slowed way down and turned my head to the side. I was passing a shiny red semi-truck, and on the door it said, "Maverick." That's all - or at least that's all I saw. Maverick. Coincidence? I don't think so. I think it's what I asked for. I was thankful - so thankful for that.

(Sigh) so, speaking of thankful, we're going to my uncle's house for Thanksgiving and to Greg's parent's on Friday. I love Thanksgiving food. It is my favorite, favorite, favorite. We'll get to see a lot of family - my brother and his family are coming up from Texas. We haven't seen them in quite a while - I'm looking forward to seeing everyone.

I went to lunch today with one of my favorite pilots from Mediflight. He's the one who flew Mav and I back to Oklahoma. I miss seeing all my Mediflight friends and working with the sick babies, but there is no way I could have squeezed anything else in this semester. I'm hoping next semester might be a little better. I'll still have 12 hours, but one fewer class. I'm starting on my clinical hours early- the second week in December, so I'll have 70 hours out of the way before the semester starts. There are a total of 180 clinical hours next semester.

What else? We're having family pics taken this weekend - hopefully everyone will stay well. I know there are a ton of other things I meant to write about, but I can't remember them now. I saw a neat idea on the internet and I think I'm going to do it. It's a memory jar. Decorate up a good sized jar however you want. When the kids say those funny things you want to remember or when something memorable happens, you write it down on a little piece of paper and put it in the jar. You all probably have amazing memories and don't need a memory jar. I'll post a pic when we get it fixed up.

Okay, well, it's very late and I need to go to bed. This post wasn't meant to be too depressing. We're doing okay, I think this is just a difficult time of year. Hope you all have a wonderful Thanksgiving. Love you all, jc

Monday, November 9, 2009

KXXY interview and kids stuff

My stepmom, Teresa, sent me a link to the radio interview. Greg and I listened to it tonight and it made me cry. I've never heard that song before, but it was very appropriate. They did a great job compiling everything. Here's the link. Click on the KXXY folder - it will open the folder. Then click on Maverick and download, then open it. I'm sure the other stories are amazing, too.

The kids and I went to Lowe's this evening... They have always wanted to jump and play in a big pile of leaves, and we have plenty of leaves in the yard right now. The problem is we don't own any rakes. We've always had a lawn service do our lawn (Peltier Lawn Service - if you need a good one) and they've always cleaned up the leaves. SOOO, this evening I called and asked them to not clean up the leaves, and the kids and I journeyed out to Lowe's to pick out rakes. Chloe even got a little yellow one. The big ones are guaranteed for 25 years, so I told Carter he has to come back every year for the next twenty-five to use "his" rake. His eyes got big and he said, "I'll be 33 years old!!" They were able to rake one big pile in the front yard and play around in it a bit before dark. They can't wait to do it again tomorrow. It's funny how it's all play to them. I'll post some pics in the next few days.

Little Chloe is getting sassier every day. She's been asserting her independence and testing her momma. She was taking a bath last night and wasn't minding and I told her sternly with my stern face to "mind the first time." I was in the middle of another sentence and she said, "Wait!" I said, "what?" She looked at my face and got closer, then further back, then closer again. She finally said, "Somethins wrong with your eyes. You need to go to the doctor." I said, "What's wrong?" She said, "They're popping out of your head." How could I continue with my stern talk after that?

I better go for now. I have another test tomorrow. Love you all, jc

Thursday, November 5, 2009

Preparing Children for the Hospitalization of a Sibling

I wanted to post this assignment from my Health Promotion/Disease Prevention class. The assignment was to do any type of anticipatory guidance handout/brochure. There have been sooo many brochures on immunizations, infant safety, feeding guidelines, child safety, etc. I started thinking about what I learned during our hospitalization with Maverick and what might be helpful to others about to embark on the same type of journey we were on at this time last year. So here it is. I was only able to download it as a jpeg here, but if anyone wants a pdf file of it, send me your email and I'll send it to you. It is a tri-fold brochure and the top is the front and bottom is the inside. Anyone is free to use it as needed. Hopefully it will help another family in a similar situation.

School, Mav's lecture, and Jonah vs. Job

Hello, everyone. It's been a while. I've been in clinicals and doing lots of school work. Today was my last day of clinicals for this semester. Thanks to Dr. Jennings and Dr. Chapman for letting me tag along and for all the great learning opportunities. I enjoyed them.

The first day of the pediatric clinicals was very different. I have never worked in a pediatric outpatient setting and on the way home I was thinking, "What am I doing?" It goes without saying it's completely different than mediflight. I've always been the type that has to feel competent at something to enjoy it, and looking in ears took a little bit of getting used to. On the first day, I went home thinking, "it is so much easier to intubate a 24-weeker than it is to look in a kid's ear." After about the third day, I really started to enjoy it and the ears are getting easier. I'm going to do some clinicals again in December to get an early start on next semester's hours, and I'm looking forward to them.
I heard that Mav's story was on the radio this morning for the Children's Miracle Network radia-a-thon. I think it's on 97.something. I'll have to find the paper to be sure. It's supposed to be going on through tomorrow. I'm glad they aired it. I was wondering if they would since it wasn't the typical "look-our-miracle-baby-made-it" kind of story.
Speaking of little Mav, I went to the meeting last week at Children's to speak with Dr. Stull, CMN, and my step-mom, Teresa, about what to do with the money. He had a suggestion that Greg and I loved. He said the amount we have is about the amount needed to sponsor a lecture from an expert in the field. So, that means they'll pick out someone who's a big name in pediatric cardiology and have them come to lecture the doctors, nurses, and med students on the latest advances/innovations/practices in pediatric cardiology or something related to that field and sweet baby Mav will be sponsor/reason/whatever it will be called for the lecture. All that being said, he's going to talk with Dr. Overholt (the chief of cardiology) to see what he thinks (or if he has any better suggestions) and then they're supposed to email and let me know. I haven't heard anything yet. He said it could be an annual event as well as long as we continued to have the funding. So, we'll wait and see what they say. I hope it all works out. I think that's a great way to honor little Mav.

The kiddos have been doing well, and everyone except Greg is over the bouts of illness. He caught it worse than the kids and has been doing breathing treatments to try to get his lungs cleared up. But, hey, this is just normal stuff. Stuff to be thankful for.
Just some food-for-thought... Maddie and I went to church last weekend and there was an amazing guy named Afsheen (sp?) that was speaking. His sermon really got to me. He spoke about Jonah and the whale and how Jonah kind of had a bad attitude. There were instances where he ran from God and got mad at him. Then he spoke about Job and how eventhough he lost everything, he continued to be faithful and didn't get mad. I'm not doing this sermon any justice, but I walked out thinking about how much I have been like Jonah - mad, ungrateful, etc. And how I need to be more like Job. I've felt like the last few years for our family has been a "Job" kind of experience - not just with Mav, but with the many other issues we've faced. I just haven't handled it the best way. I've decided I can't keep on being mad. God helped us get through the past couple of years in numerous ways, and to be mad because he took Mav discredits everything good he did. Soooo, maybe this will be a turning point in my life, once again.