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.

Thursday, April 30, 2009

Handsome Boys and a Crazy-Haired Girl

Isn't he handsome - even all dirty and sweaty.

This was after practice. He even put the black stuff under his eyes - it was a bit smudged off by the end.

Pitching like a pro - okay, I really don't know how a pro pitches, but it looked pretty cool to me.
















The first practice of the season was tonight, and Carter had a great time. I think all of the kids did. He loves to play any kind of ball. I know some of you might not believe me, but he threw his first ball when he was nine months old. I'm being serious. I think we even have it on video somewhere. Their Poppa James came down tonight and watched him play. Then we went to get snowcones afterwards. It was after 8:30, but what the heck.



This is a picture of Chloe playing with the sidewalk chalk at the snowcone stand. She told me she was going to draw her picture. She started out with purple chalk hashing lines back and forth. She said, "Dat's my hair all crazy when I wake up."

Chloe and I just ran some errands today and I had some things to do around the house. I also had to make my coupon rounds to CVS and Walgreens. Oh, and I had to go pick up my meds from the doctor's office. I did leave them there. I was relieved when the receptionist told me they were there because short of some closet in the garage, I had no idea where I would look next. Considering how it's now 12:30, I suppose I should go ahead and take them. I've been up visiting with James and haven't taken them yet.

I downloaded some pics of Mav that were on the internal memory of my camera tonight with Carter's pics. I also came across a couple of videos. So, I was thinking, if any of you who sat with Mav or came to see him have some pics of him on your phones or cameras I would love to have them, too. If you don't have my email, send me a note here with yours (I won't publish it) and I'll send you mine. Here are a few of the ones from the camera.




Me and our sweet boy on his three-month old birthday. The staff ordered him a cake - for us to eat. But, we did put a bit of icing on his paci. He wasn't really sure about it.
The three-month-old celebration with some of the wonderful staff in Dallas.


Mav got to see some of the Dallas Cowboys and Cowboys Cheerleaders before we left Dallas.I love this. He's sleeping so well with his monkey and his frog snuggled up with him. He loved to feel of them. This was one of the first - if not the first time he had clothes on. I remember crying because he was almost three months old and had never had on baby clothes. You mamas of little bitty ones, give them an extra smooch for me tonight. I miss having those tiny cheeks to kiss. Love you all, jc

Wednesday, April 29, 2009

Sweet Baby Boy, Mama's not asleep yet

We found this sweet picture on Maddie's phone this evening. It was taken just minutes after he was born, before he was whisked away to the NICU.

Well, it was rainy most of the day here. Actually, rainy is quite the understatement. If we lived closer to the coast, I might call it a tropical storm. The wind was awful. I went to see the practitioner this morning and we had a good visit. She lost a son several years ago, so she had some good advice. She gave me some samples of sleeping medicine, but after searching the house and the vehicle I've come to the conclusion I must have left them at her office. I sat the bag down to write out my check. Maybe I left it there. I have retraced my steps after coming home haven't been able to find it. Sometimes, when I'm sidetracked and preoccupied I'll lay things down and forget where I put them or put them in strange places. I thought I might have done that, so I looked in the laundry hamper, pantry, trash, bathroom, refrigerator, and any other odd place I thought I could've placed it. Still no luck. I'll call the office tomorrow and see if they're there. So, for now, I'm awake and waiting for the Excedrin PM to kick in...

Chloe went to Mother's Day Out since I had the appointment, so I was also able to have lunch with some friends by myself. I love taking Chloe with me, but you know, sometimes it's fun just being with your girlfriends. She was a bit upset when she found out I went to Benedict Street and had coffee without her. She was asking me this evening if we were going tomorrow for lunch, "We go to Ben Stweet tomowow for lunch?" Probably not tomorrow, but maybe I'll make a pot of coffee in the morning. That should make her happy.

Greg, all the kids and I made a quick trip to OKC after school today to get Carter a baseball glove for his practice tomorrow. He is so excited. It will be fun watching him play. I'll try to put some pics of him on tomorrow. My phone isn't cooperating again, so I have to upload the pics to the computer to post them. The last time it stopped working and was giving me the "memory" issues, the guy at Subway fixed it for me. I was paying for my sandwich and the guy working asked how I liked my phone. That got my attention. I said, "Why, do you have one?" It was my lucky day - he did. I told him the issues I was having and he fixed it in about 15 seconds right there at the cash register. Maybe I need to go back tomorrow.

Just FYI, I'm still waiting to hear from the pediatric nurse practitioner program. I think I should hear something in the next few weeks. If I don't get in, expect a pity party to be thrown. You'll all be invited. I'm just kidding, but I really don't have a plan B right now if this doesn't work out, so I'll just wait and see what happens.

Before I stop for the night, I just wanted to say thanks to those of you who are still praying for us. We need all the prayers we can get. We have a few up-and-coming issues that I'll share in a later post. Love you all, jc

Tuesday, April 28, 2009

Whatever You're Doing

Just thought I'd share this song with you. So many of the sentiments in it ring true for me right now.
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lyrics :

It's time for healing time to move on
It's time to fix what's been broken too long
Time make right what has been wrong
It's time to find my way to where I belong
There's a wave that's crashing over me
And all I can do is surrender

(Chorus)
Whatever You're doing inside of me
It feels like chaos but somehow there's peace
It's hard to surrender to what I can't see
but I'm giving in to something Heavenly

Time for a milestone
Time to begin again
Reevaluate who I really am
Am I doing everything to follow Your will
Or just climbing aimlessly over these hills
So show me what it is You want from me
I give everything I surrender...
To...

(Chorus)

Time to face up
Clean this old house
Time to breathe in and let everything out
That I've wanted to say for so many years
Time to release all my held back tears

Whatever You're doing in... more
© 2009 YouTube, LLC
"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

Sunday, April 26, 2009

Milk Moustaches

Today Maddie and I went to the OKC Memorial Marathon. This was at the "Got Milk?" booth after we finished. We had a great time. We ran the last 1.2 miles for her to complete the kids' marathon. I thought about Mav the whole way - about his fighting spirit. We ran then browsed the marathon grounds. We toured the OKC Memorial. That was the first time we had been there. It was amazing. It was first class all the way. I highly recommend it to anyone who hasn't been. I still remember where I was when the bombing happened. I was just out of nursing school and was working for Dr. Robert Buchanan at St. Anthony's North. He is a plastic surgeon. I was in the office looking over pre-op charts and felt the building shake. We were at 63rd and Centennial Expressway. We turned on the television and saw what had happened. Dr. B and I went to St. Anthony's to help however we could. Greg was already there working. It's horrible to think how one person could cause so much harm.

After we finished, we went home and planted some flowers in the window boxes. I went to the cemetery this evening. It was so windy, I didn't take flowers this time. They would've blown away. As I was pulling up, I thought how wrong it was to have to visit my baby at the cemetery. This has been so difficult.

Yesterday, the girls and I went to see my Granny and Pa in Tuttle. We had lunch with Gran and went shopping for awhile. It was fun. Granny made us a lemon pie - one of my personal favorites - that and coconut. Everyone should have a Granny like mine. I'm a lucky girl.

Well, I better go try to get some sleep. Love you all, jc

Matching tattoos

Ok, they're just temporary, but we thought we were pretty cool sporting matching tattoos for the marathon.

Maddie and Her Medal!

Yea, Maddie! She and I went to the OKC Memorial Marathon today and completed the kids marathon. The kids train for 25 miles in the month or so prior to the marathon and complete the last 1.2 miles on the day of the race. She was so proud. She's such a sweet girl.