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, June 28, 2009

Catching up

I haven't blogged in several days, so I'm catching up today. I stayed around the house until yesterday. We got out for a little while yesterday evening. I've felt good, my groin area is just a bit sore. Nothing ibuprofen won't fix. I just can't imagine what little Mav must have felt, though. They poked so many times the last time they tried to do the heart cath to create an ASD. And I know that pain was nothing compared to his two open heart surgeries and other procedures and operations. He was truly a tough little guy.

We all went to church today. The sermon was great. It was on James 3:13-16 and was about wisdom. Here's one thing Todd said, "Wisdom is not understanding all that is going on. Wisdom is making good decisions as life is thrown at you." I've been trying to understand the why's of everything that has happened. I still can't make sense of it. I know that I need to just continue on and focus on making good decisions now. Sometimes it's hard though. His sermon gave me some things to ponder and implement.

I can't tell you how palpable the relief is in this house. Things were so tense and uncertain before the procedure. We weren't sure if it would work or if we would be looking at an open heart surgery sometime in the near future. And there are always risks with any procedure. The kids were pretty wound up about it, especially Maddie. Greg was very concerned. It's just been so nice to have this issue behind us, and I've been feeling better emotionally since it's over. Greg has, too.

One thing I'm going to miss are the amazing meals my friends cooked, though. I can't, in good conscious, "milk" this anymore... sigh. My children are going to have higher expectations of me this week. Every night at the table, the kids had nice compliments to say about the food and the person/people who prepared it. My favorite/funny comment was from the Chlo, of course. She said, "Ms. Gaynell is da best cook in da evah." We got a bunch of groceries at the big W. Maybe I can win them back over with my "famous" spaghetti. That's the dish they all like the best of mine. My secret? Prego from a jar - pour into 1 pound cooked hamburger meat. I don't know what happened in my family. The good-cook gene was passed on to my brother instead of me. That is so not fair.

Thanks for all your prayers. Love you all, jc

Wash Me

Ok, I can't figure out how to rotate this image from my phone, but you can read the writing better this direction anyway. She was playing outside with Carter and Kirk without shoes on and her feet were black. Dianna (Kirk's mom, my friend) gave me the idea to do this to her feet. She giggled the whole time I was "writing" on her feet.

Maddie's tomatoes

Here's a pic of Maddie with her first ripe tomato - it's kind of hard to see. It's a cherry tomato. She has several different kinds growing and they've all done amazingly well. She also has a watermelon growing. I think she has a green thumb.

Kids playing

Here are the kids playing yesterday. Kirk dressed up, the girls put on their army shirts, and C-man just stayed in his regular clothes. The girls came into the kitchen with blue sparkly stuff under their eyes before they went outside. I asked Maddie what it was. Want to take a guess? Nailpolish. I let her know that taking it off would be stinky and the fumes might hurt their eyes and noses. Then I dismissed them outside - that was dealt with later. They played for quite a while and had fun. The polish came off without many complaints, but that will probably be the last time they decide to do that. It does look pretty cute, though.

Me with my ice cream

Ok, the ice cream pics need an explanation. We've been to the big W and I did alot of shopping. The ice cream bars the kids have were free - I had some good coupons. The Starbucks ice cream I have - caramel macchiato - is yummy and was only around 45 cents from a coupon in last Sunday's paper. So, we sat outside this evening and had some ice cream. The "cool front" that came in left the temperature in the low 90's today, and after the 100+ weather the past several day, it felt pretty pleasant outside this evening. I just had to brag a little about my deals :)

A pic of Carter with his ice cream sandwich

He's had a good weekend. He and his friend Kirk have played pretty much all weekend. They keep themselves entertained and have a great time together.

A pic of Chloe and her favorite baby

Chloe continues to take care of her baby. She puts clothes on it in the morning and changes it's diaper and puts jammies on it at night. She talks baby talk to it and talks to us about it all the time. Sometimes baby is a girl and sometimes it's a boy. Baby is usually just baby, but sometimes its name changes. Baby has been in the hospital and was very sick, "but she got betta. She not die." She'll bring up the times that baby had the yellow thing in her nose (Mav had a yellow feeding tube in his nose). The other day she said, "My baby was all ova me in da bed last night." I think she's heard that line from me - she still sleeps with us sometimes. Here's a funny story about "baby" from a few weeks ago. We were at Walmart getting some groceries and baby had to go with us. Baby had clothes and a hat on and had to sit in the front of the cart I was pushing. I had some coupons and stuff sitting on baby's lap and baby was laying back and to the side with it's head kind of out of the cart. A woman walked by us on the toothpaste aisle and I saw her out of the corner of my eye. She did a double take and I heard her gasp. I looked up at her and she was looking at baby and then at me. I had to show her that baby wasn't real and explain that she has to go with us everywhere. We both got a good laugh out of it.

Wednesday, June 24, 2009


I am home this evening. Thanks to Dejah for updating for me - the procedure was successful. For my medical friends and the heart-informed readers I'll share the details. The defect measured 22mm when they measured it during the procedure. It was too big for the Helex device, but Dr. Sperrazza was able to place a 24mm Amplatzer - it's the one in the video below. It fit nicely and isn't causing any problems. The deficient rim didn't cause a problem. I've been having some PAC's (premature atrial contractions), but they've lessened a lot since yesterday. No one seems to be too concerned about them. I had an echo this morning to confirm that the device looks ok and to get some baseline values for the echos to come. All was well. I'll have a follow-up appointment with Dr. Ward in one month, and I think there will be an echo done at that time. I'm taking Plavix and aspirin for six months. Greg got a kick out of that. I've always kidded him about having to take all his "heart medicine" at his age (blood pressure and cholesterol pills), never thinking I would have any health issues of my own. I couldn't have imagined. They checked out my coronary arteries while they were in there. They looked great - no blockages. I really hadn't been very sore, but was a bit more sore after I got home this afternoon. At this point, it looks worse than it feels. Lets just say I wouldn't be very attractive in a swimsuit right now. I didn't get much sleep last night, hospitals are so noisy. I came home and took a nap this afternoon. This is a pic of the wonderful pillow I had last night - which might also have something to do with my sleeping difficulties. Seriously, can this be considered a pillow? I asked for another one, but was told they were all like like this. Note to self: always take pillow and ear plugs to hospital.

Maddie and Kelsey (my friend Kristi's daughter) went swimming this afternoon with Kristi, and Greg picked up Carter and Chloe from their Aunt Jan and Uncle Bob's house. Our friends Dovie and Polly brought us dinner tonight - thanks, girls! It was great. Thanks to everyone who has helped us out this week.

I can't finish this post without acknowledging little Mav. Last night I was laying in the hospital bed thinking about him and how ironic it was that the same night four months prior I was laying with him in his crib at Children's. It was the night before he died. It has been four months today. Today, I left the hospital with a better chance at a long life without heart complications. The same day of the month he left to be with God. His little body left the hospital in a car seat en route to the funeral home. If he had never come into our lives, I may have found out about this defect too late. We still love and dearly miss our sweet boy. I just hate it that he had to go through so much. I love this picture of him. It was taken right after he was born. One of Greg's favorites is posted below with an explanation.

It was a bit difficult going into Children's yesterday, but my friend, Lori was with me in the cath lab. We also saw Danny, the chaplain I've known for many years. Mav's nurse, Marcy, came to see us once we got into a room. It was as good as it could've been, given the circumstances. Thanks for all your thoughts and prayers. Love you all, jc

Mav leaving the hospital

2-24-09: Greg carried Mav out of the hospital to the funeral home car wrapped in the silky blanket I always held him in. He felt so honored to be able to do that. He took this picture of him after he placed him in the carseat. He loves this picture and says it's the most peaceful he's seen him. I have a harder time looking at it. It just brings back all the preceeding moments to me. Either way you look at it, though, he is beautiful.

Tuesday, June 23, 2009

Update on Jules...

Hello All! I'm Dejah Quinn, Julie's friend and she asked me to update the blog on her behalf. The procedure Juli had today on her heart took!!

Dovie and I turned the corner to the waiting room at the hospital and were greeted by Maddie's ear to ear smile. She was so very happy and ran straight at us yelling and jumping up and down exclaiming "It worked! "It worked!". Needless to say everyone was relived and happy at the same time. I have no fancy medical terms for what actually took place (I'll leave that to the experts)....but I can report that "IT WORKED!). Juli was was recuperating and in great spirits when I left the hospital around 3. They were about to move her to her own hospital room were she will likely be at least until tomorrow.

I know that the family thanks you so much for all your prayers and covets your continued prayers as Jules recoups. I did not get to see Juli and Greg before the operation but I am guessing it was pretty bittersweet to be in the same place they said goodbye to their baby boy Maverick only 4 months ago....especially in light of the circumstances that brought them there. After all, had it not been for precious baby Maverick...Juli might not have learned of her heart issues.

I'll keep you updated as I hear more!

Monday, June 22, 2009

Father's day cupcakes

Maddie made cupcakes all by herself for Father's Day. It's hard to tell, but they look like little lawnmowers. She did a great job. Any time there's a camera out Chloe has to get in on the action.

Happy Father's Day - procedure coming up

We took this pic yesterday at Greg's sister's house. This is Greg's dad. We saw my dad in the early afternoon and his later in the afternoon. We went to the cemetery to Mav's grave after we left from seeing Greg's family. Father's Day wasn't easy for any of us - especially Greg. We're thankful to have both our dad's still here and they are wonderful, but there was still a void. There always will be.

My mom and Brown came into Shawnee yesterday evening. They're staying here for a few days due to the procedure. It's tomorrow @ Children's. I'm hoping all will go well. It should start around 10:30 - if the procedure before me is on time. You know how hospital time works. It could be 3:00pm before I go in - we'll see. I'll have someone update the blog when it's finished. If it works, I'll spend the night at Presby tower. If not, I'll be home in the evening. I'm a bit apprehensive about all this. I'm not really worried about anything going wrong, but I'm nervous about going back into Children's. I haven't been back since Mav died. One of my Mediflight friends now works in the cath lab at Children's, so it will be nice to have someone I know well there.

When my dad came over on Sunday he asked about the procedure and how it worked. I started to explain it and Greg said, "Why don't you pull up a video on the computer?" Brilliant idea. Dad said it helped him understand it a lot better. I'm posting a link below for anyone else who's curious how it works. I may not have the exact same device, but the concept is the same.

Well, enough for now. I need to go pack my bag. Say some extra prayers. Love you all, jc

"Pediatric Cardiology: Atrial Septal Defect Closure"

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A detailed account of an intricate pediatric cardiology procedure successfully performed at MassGeneral hospital for Children.
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Thursday, June 18, 2009

I finally uploaded the pictures. As you can see, the kids had a great time last weekend. That's about all we did was swim and sit out by the pool. They had movies after dark on a big outdoor screen that we watched as well.
We left Friday afternoon and stopped by Mav's grave on our way out of town. Greg and I had been talking about him the night before - he would've been nine months old on Friday. We took some flowers to his grave and as I was getting ready to place them, Greg brought a blanket out of the truck and spread it over his grave. I had told him the night before that miss him so much I just wanted to lay on his grave, not realizing that he would actually try to arrange that for me. I know it may sound strange, but I just want to be as close to his sweet little body as I can. So, I just lied there with my hand touching the blanket on the ground above where his little chest should have been. I am so blessed to have a husband who listens and tries to help me in the midst of his own grief. After the above scenario and a crying spell, we were on our way to the hotel. I think it did all of us a world of good to get away from the house.
We got back home on Monday and it's been pretty difficult since then. I think with his nine- month-old birthday last week, Father's Day this weekend, and my procedure coming up on the 23rd (which is the day before he died), it's made for an emotional week. I've just had a case of the blahs. I'm trying to focus on all the things I have to be thankful for, but sometimes it's just easier to throw a pity party for myself. I can't help but think about what our other kids were doing at nine months: crawling like crazy, cruising, and Carter had started throwing a ball. I can't help but think about all the things we're missing with Mav. Of course I realize he wouldn't be doing them now even if he was still alive, but I think you get the idea. It's just been hard to smile this week. My old friend insomnia has crept it's way back into the past couple of nights as well. I suppose all of this is to be expected since I'm now a life-long member of the club no one wants to join.
Anyway, my mom and Brown are coming in this weekend. My friend Kristy called today and she and her daughter are coming in next week. It will be nice to have some extra people around to keep my mind occupied. I'm not worried about the procedure, I just hope one of the devices will work. Well, this is probably enough rambling for tonight. Love you all, jc

Monday, June 15, 2009

Fish, fries, green tomato relish and some R &R

Here's a pic of the Windy's catfish meal.

We all got out of town this weekend and went to a town in SE Oklahoma called Durant. Greg found a hotel online that is associated with a casino there and it had a wonderful pool. It's only a two hour drive from here and we have friends in Durant, so it was a nice quick trip and we were able to see some friends we haven't seen in awhile.

This pic is of Greg and the kids in front of a place you would never go without a recommendation. Seriously, as you can see, it doesn't look like the best place to eat. My grandparents used to live at Lake Texoma (by Durant) and we would frequent Windy's when we went to visit them. They have great catfish. The ambiance is a bit to be desired, though. We encountered a rather round man with a very loud burp at a table close-by. Maddie said it made her lose her appetite and took her food back to the hotel in a to-go box. It was pretty disgusting. Anyway, the fish was still as good as ever and I love the green tomato relish - I think it's a southern thing.

Most of the time we stayed at the hotel pool and took in some sun. Those pics are on the camera, so I'll post them tomorrow. We really had a good time. I wasn't quite ready to come home.

Not much else new going on. My procedure is still scheduled for next week. We met with Dr. Sperrazza last week and he seemed pretty positive about the procedure. He's going to try the Amplatzer device and the Helex if needed. Hopefully one of them will work. He answered all my questions, and we feel pretty good about it. Dr. Ward will be in on the procedure as well - I'm glad.

I'll write more tomorrow. I'm going to try to get to bed somewhat early tonight. Love you all, jc

Sunday, June 14, 2009

Still Here, Just Getting Away

We decided to get out of town for the weekend. Just didn't want anyone to worry. We're coming back home tomorrow and I'll post some pics then. All of us needed some R&R. Love you all, jc

Monday, June 8, 2009

I haven't posted a Mav pic in awhile and the little guy has been on my mind a lot today. This is one of my favorites. He loved looking at his mobile. This was one of the toys we hung from his bed. I've come to realize that the pain of our loss doesn't go away. Some days are easier, but I'll see a cute baby boy and ask how old he is only to realize that's how old Mav would be. I saw my sister and sweet baby Addison yesterday - little Addie is now a little over five months. That's how old he was when he died. I know I've said it before, but I just wish things would've been different. I wish he could've enjoyed normal baby things and wouldn't have had to endure so much pain. I'm glad he isn't enduring it now, though.
I was looking around at some blogs last night and came across one for PLE research. I signed up. As far as I know, Mav is the only baby that's been diagnosed with PLE. Most patients develop it after the Fontan. I thought if his problems could help someone learn more about the causes, we should sign up. I haven't received a response from them, yet.
I've also been looking at more grave marker designs. We have to have a flat grave marker where Mav is buried. We would really like to have it in place by his birthday, so we need to make some decisions. It's so hard to decide exactly what we want and I want it to be perfect. I'll keep you all up-to-date as we progress. If you have any good sites to look at, feel free to send me a link. I have three favorites so far. I just want something very unique. Something that will let people know how special he was and how much he is loved and missed. Here are two of the sites. The other one isn't working tonight for some reason. These are not exactly what we want for him, but they are the sites that have some of the most original grave markers. Here are the links:
Today Carter had basketball camp from 8:30-11:30. He went to a friend's house after that. He had baseball pics and a game this evening. He played well. No home runs this time, though.
While he was gone, Maddie and I went to the YMCA to work-out and Chloe went to play with a friend. Then the girls and I and some friends went back to the YMCA to swim.
Some exciting news around here: Maddie's tomato plants are growing big and there are several baby tomatoes starting to grow. She has some cucumbers and peppers growing as well. She's so proud of them. She's been taking care of them all by herself.
More good news: Greg's cousin, Rachel, had a good report on the tumor that was removed from her brain - it is not cancerous! She's recovering well.

Just an FYI - if any of you living in the Shawnee area have old shoes lying around that your kiddos have outgrown, the Hope House needs them. My friend, Dovie, took some things by there today and they said they really need shoes. They have been filled to capacity this summer. For you all not from Shawnee, the Hope House is a temporary place for kids to stay when they're taken into custody due to parental issues. They're there until they're placed into foster care. If you need more info, just let me know.
Well, enough for now. Love you all, jc

Friday, June 5, 2009

What is that?

An explanation of the above picture:
Our refrigerator was a mess. It needed to be cleaned. It was going to be an all-day job and I needed help. I told the kids we were going on an adventure and we were going to see how many colonies of mold we could find in the refrigerator. Carter was all over it. He donned the gloves and wanted to be the "explorer". This moldy cucumber was his first of many finds. I think what was more troubling than the mold colonies was the McDonald's french fry that was at the back of the bottom of the fridge. It had been there for no-telling how long and it still looked perfect. I took the opportunity to tell the kids about how "real" food gets moldy, but the french fry had so many preservatives that it still looked exactly the same. I don't think I've deterred them from eating french fries, but who knows?

Here's a picture of Maddie showing off the clean fridge "Vanna style." That was our excitement for the day.Monday, Carter had a baseball game and if I can just brag a little, he had two home-runs! Here's the little guy at the game. If you notice, his hair is now short. He wanted to get it cut. He looks very handsome with it short, but I miss the long hair. I think it's just a "mom thing."

Wednesday Maddie went with a friend to a thrift store to find some cool stuff for the theme nights at Falls Creek (church camp). Carter had a friend over and Chloe followed them around. Wednesday night Sonic had free rootbeer floats, so that's where we went. The pic is of the kids enjoying them - Greg and I did, too!

Maddie leaves for camp week after next if she doesn't change her mind. She has been very hesitant about going because my procedure is the week after she gets back. She's scared something will happen to me and she'll wish she would've spent more time with me. I think it's horrible that a twelve-year-old even has thoughts like that. What do we tell her? We've told her that things should go well; however, there are always risks to any procedure. She knows that her great-grandmother coded (went into cardiac arrest) during a "routine" heart cath the month before Maverick was born. They got her back and she's fine now, but with that and Maverick as a reference point, I can see why she's concerned. I've told her I want her to enjoy her summer. If she wants to go, then she should go. If she wants to stay home, that's fine, too.

Back to Wednesday, it was a strange day for me. It was the first day since Mav passed away that I didn't cry. I know it probably sounds weird, but it makes me tear up just thinking about it. As I've become connected with the blog world of other heart moms, I've come to realize that even if he had sailed through the first surgery without any problems that wouldn't have been a guarantee of a long happy life. One sweet heart boy died last week at two years old. He awoke in the night and didn't feel well and passed away at the hospital. Another little heart warrior who was seven lost his battle recently from complications of PLE (protein-losing enteropathy - one of the complications Mav had). With congenital heart defects, you don't have any guarantees. Really, with life in general, you don't have any guarantees. My heart and prayers go out for those families. I know how tremendous their losses are.

We got the results back from Greg's stress test, and everything looks good. That is a big relief. He's in OKC tonight at a sleep lab getting set-up for CPAP. He has sleep apnea that was found at his sleep study on Sunday night. Hopefully he'll feel like a new man when he comes home tomorrow after sleeping with the CPAP. He's been so tired lately, but we're thankful his back hasn't been bothering him much.

Yesterday morning we went to the "Summer Movie" deal in Bricktown - i.e. cheap movies for kids during the summer. Last night we went to the musical, "Oliver" at Shawnee Little Theater. It was great. The kids loved it. We know several of the people in it. Our friend, Amy, and her sons, Logan and Caleb, did a wonderful job. Amy even did a perfect cartwheel. We had to "whoop" for her after it.

After we got home last night, Carter ran into the kitchen yelling, "HEY, SHE JUST BIT MY LIPSTICK!" I just cracked up. Just what a momma wants to hear from her son. He got some new flavored chapstick and Chloe found it. Sure enough, there were bite marks on it, and she still had the evidence in her mouth. Carter was not happy.

Here's a funny Chloe story. She was laying in our bed the other night and I was scratching her legs. She likes to be gently scratched when she's going to sleep. I usually scratch her back or tummy, but I was reading and her legs were easier to reach. She said, "Mom, wook, I have spwinkles." She pointed to her legs. I told her those weren't sprinkles, they were goose bumps. She looked at me and tilted her head to the side and repeated, "Goose Bumps" like she was letting those words really sink in. While this conversation was taking place, her goose bumps went away. When she realized it she said, "Do it again!" I did and then she asked, "What they called?" I thought it was so cute.

I've been thinking about NP school this week and am trying to decide how to do it. They offer a full-time program and a part-time program. They do not recommend the full-time program if you are working at all or if you have any other obligations. I think my family might count as the latter. I don't want to miss out on everything for a little over a year. So, I've sent the school an email asking if someone who has finished the full-time schedule would contact me. I think it might be helpful to ask someone who's been through it what their thoughts are. We will see what kind of response I get. I'm looking forward to school - no matter which way.

Well, enough for now. I'm going to bed. Love you all, jc