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, December 25, 2009

Christmas Pics - last year...







Something is wrong with the memory card for my camera and I can't upload the pics from today or yesterday. Thought I would put these in instead... Enjoy your Christmas and squeeze your kids extra tight.

Merry Christmas

The kids have opened their presents. We had monkey bread for breakfast - everyone's favorite. The kids bundled up and ventured out into the snow and soon came back into the house complaining of how cold they were. We've enjoyed the morning, but I can't help but think of the little one that we're missing today - sweet baby Mav. He's having his first Christmas in Heaven. It must be so much more beautiful than even our white Christmas here. There are so many others with their little heart warriors sitting in the PICU's, CICU's and NICU's today praying that their children will get better. I remember that vividly. I've been updating the blog this morning as the kids are playing - why? Because it's important to me to DO SOMETHING to help the CHD community. I've often thought back to the day Mav was born and wondered, "Would anything have been different if we would have saved his cord blood?" I don't know the answer. I asked about it when we were admitted, but the nurse said there would be so much going on in the room that she didn't bring it up to me. I've read a recent study about adult patients that received stem cell transfusions immediately after a heart attack and they didn't require bypass surgery. I wonder if it would have helped his stiff right ventricle... or his kidneys... I seriously think that parents preparing for the birth of a heart baby should consider saving their cord blood. You never know what scientists will come up with next. Here's an interesting article about growing new heart valves. The physician I've been working with went to grand rounds at Children's a couple of weeks ago and this was one of the topics. Here's the link if you're interested - http://www.associatedcontent.com/article/88133/congenital_heart_defect_stem_cells_pg3.html?cat=52

There are some new links to websites at the right hand side of the page for your educational enjoyment. I'll post some pics of our Christmas Later today. Have a blessed day. Love you all - jc

Tuesday, December 22, 2009

The holidays...

The holidays... This time of year has come around quickly. I can't believe it's been a year since we were coming back to Oklahoma with our little Mav. It seems like yesterday when we were flying back home. We placed him on the bed in the PICU in Oklahoma and he popped his big blue eyes open and looked at everyone like, "Where in the world am I and who are you all?!" I'll never forget that look. Oh, what a difference a year can make. Instead of picking out new mobiles for him (like we did last year), I've been making a grave blanket. Last year I had never even heard of a grave blanket. We still haven't finalized the details for the headstone. It is just so permanent - not something we can just change at any time. Sigh... at least it's comforting to know he's happy and not in any pain. His fight is over and what a hard fight he waged. All is good for him from now on.

The brevity of life has been brought to light once again this year as we experienced the loss of Greg's Uncle Roy just a couple of weeks ago. I posted about him awhile back. He was diagnosed about 5 months ago with cancer. He was an important part of Greg's life growing up and he will be missed by many. I can't help but think about the pain his wife, Aunt Linda, is going through right now. Keep her and their children and grandchildren in your prayers this holiday season.

Our kids are doing great. We had pics of them taken a few weeks ago for Christmas cards, and I still haven't ordered any, yet. I've decided I'll not stress about it and we'll have New Year's cards - perhaps even Valentine's Cards instead... Okay, that may be pushing it. It's been difficult for me to decide how to even do the cards - I don't want to leave Mav out. I think these worries over doing things the "right" way - when there really is no "right" way - may be adding to my procrastination. When we were having the pics taken, I couldn't help but think about the sweet baby boy that was missing from the picture. I started to cry at one point during the photo shoot. Just a week or so earlier, my sweet friend Mary (www.browniebitez.blogspot.com) surprised us with a beautiful red airplane ornament. When we received the box in the mail, I didn't know what to expect. I opened it and saw that perfect, shiny, red airplane and started crying. I knew it would be the perfect remembrance in our pictures. My photographer friend, Dejah, didn't disappoint. She incorporated it perfectly. I'll share the pics this week. There is one of the airplane all by itself that I just love.

The kids are glad school is out and we're enjoying our time together. We've made Christmas cookies and put up lights. Maddie made banana bread tonight and we watched "Elf" - the kids love that movie. They're spending some time with their grandma and Aunt Jan tomorrow so we can get a few things finished up for Christmas. Tomorrow evening we'll be making some desserts for Christmas Eve. Greg's family is coming over then. We're staying home on Christmas Day and some of my family may stop by then. The holidays have been and will be sad at times, but I don't want the kids to miss out on the joy of this season because of our sadness. It's a balancing act.

I'm finished with school this semester. It went well and I enjoyed it, but I'm also enjoying this break. I'm feeling more comfortable with clinicals and kids' ears are getting much easier to decipher. Greg has been feeling a bit better and we're very thankful for that.

What else? We're working on something exciting for the end of February here in Shawnee - it has to do with raising awareness and support for congenital heart diseases. I'll have more details later. I'm excited about it. There are many new heart sites out trying to increase awareness as well. I'm going to try to get links added on here for all of them. I'm not the most computer savvy person, but I'm sure Maddie can help me!

I haven't posted many funny stories about the kids lately, so I thought I would close with one tonight. Chloe and I were driving to pick up Maddie from dance one evening. We passed a "smoke shop" and Chloe asked what all those people were doing there. I told her they were buying cigarettes. She said, "I'm not going to buy cigarettes, mom. I'm going to buy groceries," By this time we were at the corner and stopped at a stop sign. On one corner was a large - think charter sized - bus for sale. It's been there for awhile and the kids like to talk about it every time we pass it. So, with barely a second passed, Chloe finishes her sentence... "and that bus. And I'm going to paint it pink... For all my kids... Like the Duggars." For those of you who don't watch much tv, the Duggars have a reality show on TLC called "Eighteen Kids and Counting." They have nineteen kids now - all are their biological children. Yes, our Chloe want to have lots of kids like the Duggars. She wants to be a momma and "the docta that helps you push the babies out." She keeps us laughing.

Hope you all have a safe holiday and remember Jesus is the true reason for the season. Love you all, jc

Wednesday, November 25, 2009

Thankful.

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. http://public.me.com/jeromyadams 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.

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

Tuesday, September 22, 2009

Normal

I've received some more balloon pics and I'll post them soon. I love them all. Thanks so much to all of you. Just a quick update... We were able to take our drawing of Mav's marker to the funeral home last week. They are working on it now. It's very unique - just like Mav. It has an airplane as the major aspect of it. I think it will be great. I think it's going to take a while, though. While we were there, Chloe kept wanting to go to the area where Mav was on our first visit there. She wanted to see if he was still in there. I explained to her that he wasn't there and reminded her that we buried his body in the ground. She's just so young, it's hard to explain. Greg picked up a few things that we had left there. One thing was the soft and silky blanket I held him in when I would hold him at the hospital. I'm glad to have it back.


Things around here are going well. I've been busy with school and kids. I'm loving school and it's going great - except for trying to get clinicals ironed out. The kiddos are doing well (just a few minor coughs). Maddie is dancing and having a great time. I had to sew elastic and ribbon on pointe shoes today - where is my mom when I need her???

Chloe's birthday is coming up and we're having it at Benedict Street. She's so excited - isn't that funny? It cracks me up that she would rather go there than McDonald's. I'm not complaining. Dejah took some amazing pics of her, a couple are on her blog at http://www.dejahquinnphotography.blogspot.com/. She is such a ham. The cute clothes are thanks to Dr. G. She brought us fall stuff and it is soooo cute. Chloe is having fun trying things on. It's nice to have friends with great hand-me-downs!

Carter is working on school - we had parent-teacher conferences last week. He is such a smart boy, he just has better things to do with his time. We're trying to help him think otherwise. He's been doing homework and playing with frogs in the backyard, I guess they're out because of all the rain.

I was just thinking today about how "normal" our lives seem. I watched the news today - I haven't seen it in several weeks. It broke my heart to hear the mom talk about her little girl at Children's who isn't expected to make it due to the flu. A year ago we were in the hospital with sweet Mav. Just remember to be thankful for your normal days and your healthy kids, and say a prayer for those who aren't having normal days right now.

Monday, September 14, 2009

Lots of Balloons

Thanks, everyone for your sweet emails with the pics of the balloons - I loved looking at them. I have to share them...

Here's a sweet message from Judith.

Clara and Dale from Mustang had the same luck we did - the one day out of the year there was no wind in Oklahoma. Wil and Carter from Houston had better luck. Their mom is my sweet friend, Kim. We like her hubby, Dave, too. Thanks Wil and Carter - we miss you guys.


Here's Vanessa and Owen. We met them in Dallas, but they've since moved to Arizona. Owen left the hospital the day Mav had his surgery. He's a TGA heart baby and is doing great. He's giving the balloon a kiss for Mav. What a cutie. Thanks, Vanessa. Glad the weather was working for someone!




Here's sweet baby Drew. Chloe knows him and his mom "Mawy" (Mary) by name from looking over my shoulder at her blog. He's another heart warrior from Michigan. I met them through the blog world and she's been such a great support throughout everything. She has a great blog at http://www.browniebitez.blogspot.com/ and shares lots of info about CHD.
This is the congregation of my step-mom, Teresa's church, Resurrection Lutheran in Yukon, OK. They combined the balloon release with grandparent's day and let off balloons for others who have lost their loved ones as well. What a great idea.
I was so touched to receive these pics and email from Mav's nurse, Marci, and her hubby, Charlie. Their balloon attempts didn't work, either, but they lit a candle for little Mav and put their little monkey by it. Such a sweet couple.


I was so happy to find out that Michelle had taken pics of Mav's cake before she sent it to me to be destroyed. She emailed them to me today. Isn't it perfect? Those who were with us at some point in Dallas will appreciate this cake. One of Mav's nurses, Morgan, drew this little airplane on his board and I wouldn't let anyone erase it. It is a big memory from Mav's life. We just might do this same cake every year on his birthday. It was wonderful - even though the icing had shifted due to my accident. Here's how to get in touch with Michelle if you need a great cake. Myspace.com/michellesmunchies
Today, I spent the day helping my friend, Dejah, decorate her studio. I really enjoy painting and decorating. It's relaxing and takes my mind off things - and I was in good company (Dovie, Dejah, and I can't leave out Mr. Quinn). Their place looks really nice.
Tomorrow it's back to the books. I have a test on Thursday and need to get some more study time in. So far things are going well in my classes. I'm still trying to get the paperwork ironed out for clinicals. Hopefully it will fall into place soon. I better get to bed. Thanks again, everyone. Love you all, jc












Saturday, September 12, 2009

Happy First Birthday in Heaven, Mav

One year ago today...


We had such high hopes for a successful surgery. We were prepared to bring home a sweet baby in three weeks - four weeks tops (my words). I held Mav without any wires or tubes for the first and last time during his life.
If all of this has taught me anything it should be that no matter what plans I have, ultimately, I am not in control. I was reminded of that several times today; even though we had everything planned out perfectly. The first issue, it rained all day. This afternoon, kids and I went to Staples to make the tags for the balloons. When we got home and tied them on, they were too heavy for the balloons to float. We had to tie two balloons together to lift the tags. We were leaving to go to the cemetery with balloons and the cake (we weren't eating the cake there, I just wanted my talented photographer friend, Dejah, to take a "good" picture of it) when on the way out the door, it slipped from my hand and landed face-down (still in the box) on the porch. I screamed. The cake was so perfect - we had it made here in Shawnee (if you need a cake let me know and I'll give you Michelle's number). It had the airplane that was on Mav's dry erase board in Dallas on it (if any big D people are reading, let Morgan know we used it on his cake). I hadn't taken any pictures of the cake of , yet. It was pretty messed up. Greg told me it was okay and that today wasn't about the cake. We headed for the cemetery. We had a few "test" balloons, so Greg and Carter got out of the vehicle to let one go and one piece of the umbrella broke when they opened it. Then, balloon headed straight for a tree and stuck there. We decided to change plans and release the balloons from our front yard. We drove back home and went inside. During all the shuffle, the balloons became entangled - they were a mess. We finally untangled them, went outside and four got tangled again. When we finally got them untangled, the rain was so hard or the atmospheric pressure was so high that they wouldn't float. They drifted into the road and into the neighbors' yards. So, we gathered the balloons and went back into the house soaking wet and thanked our friends for their attempts to take pictures of Mav's day. When 7:02pm rolled around we took the disheveled cake out of the box, lit a candle on it and sang "Happy Birthday" for Maverick. The kids blew out the candle and a few seconds later it lit back up. It's not even a trick candle. Maybe it was a sign from Mav, or maybe it was God letting us know we're not even in control of something as small as a candle.
So, we're going to try to release the balloons another day. I suppose it doesn't have to be exactly on his birthday. That was just my plan.
Greg and I were talking on the way to the cemetery about our other kids first birthdays. We were always stressed out about getting the house clean and decorated and making sure everyone was invited; making sure the cake was just right and child was rested and happy for the event; making sure the batteries were charged for the cameras; making sure the clothes were right for the pictures we would be taking, etc. Today put a lot of things into perspective for us. This entire past year has. We shouldn't stress over the little things. We should enjoy each day no matter what problem it brings. Most problems are small in the grand scheme of things. I would have loved to have the "stress" of those small problems today.
Last night I had a hard time getting to sleep. I spent the afternoon with my friend, Dejah, talking about ideas for Mav's grave marker. She was going to design it for us. Greg and I were talking later yesterday evening and he threw out some ideas for the design. They were great. I called D and asked her to stop working on it. I cut out a piece of craft paper in the size of the marker and started drawing. Before I went to bed, I had it finished. Greg looked at it when he woke up and loved it - we think it will be perfect. I'm relieved we were able to at least finish the design before his birthday. We'll get with someone this week and talk about having it made. We've had such a hard time sitting down and trying to come up with something for his grave. Some people have the markers ready and placed in a few months, and we've felt bad that we haven't done that. It's just been so hard to look back through all the pictures and pick which ones we want on it. I'm glad we've finally decided. I can't wait to have the finished piece to share with everyone.
Before I get off here for the night, I just wanted to thank everyone for their sweet sentiments, cards, gifts, flowers at the grave, and prayers. It means so much to know that our sweet boy hasn't been forgotten - really, you'll never know how much it means to us. Thanks so much. We're so blessed to have you all. Love you all, jc
For momma's sweet boy on your first birthday,
We miss you so much. I miss walking into your room in the morning and saying, "How's momma's sweet boy?" and kissing your soft little cheeks. I miss seeing the look you would give me when you wanted your mobile turned on. I miss holding your hands. I miss rocking you during our special time during the day. I miss seeing you feel your favorite little monkey. I miss reading you "Brown Bear," you always liked looking at the bright colored animals on the pages. I wish we could have shared those times at home. You're in our thoughts everyday.
Thank you for being such a fighter and for trying so hard. I know you gave it everything you had and we're so proud of you. I'm so sorry for all the things you had to go through. I'm so glad you no longer have to endure the tubes, pokes, fevers, dressing changes, procedures, and pain. I would've given anything to take your place. Daddy and I both would have. You are truly my hero and Daddy's, too. I know you don't miss this place at all. I know you're happy and healthy and free now and that makes me happy for you. I just sooo wish things could've been different. It just seems so unfair.
You have touched our lives and changed us forever. Your spirit will always live on as long as we're alive, I promise. I hope you know how much you were, and are, loved. That was one of my constant prayers for you while you were here with us.
We love and miss you, little man. One day we'll see you again.
Love you forever,
Mommy

Friday, September 11, 2009

Overwhelmed

Overwhelmed by all the thoughtful sentiments; overwhelmed by all the support from family, friends, and strangers; overwhelmed by all the pain and tears; overwhelmed by all the blessings we have been given. These are my thoughts today. Love you all, jc

Wednesday, September 9, 2009

'Bama and Birthdays- Planning for Mav's Special Day

I made it back from Alabama. Three of my girlfriends went - Amy, Dejah, and Dovie. They went running around while I was in class and we all hung out together in the evenings. It was such a nice trip. I'm so glad they went with me - do I have amazing friends, or what? The first night class let out kind of late, but I really wanted to go to the beach. We went, but by the time we got there it was dark :( This pic is a bit blurry - my camera had a hard time focusing at night.
It was still so peaceful and beautiful - even in the dark. Something about beaches makes me relax. Maybe someday we'll have a home by the beach - okay, really, I'd be satisfied with just an occasional vacation there.
I learned a lot in the classes: how to suture (put in stitches), how to do coding (for billing), how to suit up for a bio terrorist attack (it's some kind of new requirement for NP programs), how to do pelvic exams (fyi - it was on a simulator/dummy), and I learned all I could ever want to know and more about STD's.
The last day of class we got out a little early and were able to get to the beach before dark. I am so glad the girls went. I would have been lonely without them. We were all ready to get back home to see our hubbies and kids, though.

Greg and the kids did well. Maddie didn't start dance until this week, and Chloe starts next week. Chloe started Mother's Day Out while I was gone and she loves it. I picked her up today and she got in her car seat, let out a sigh, and said, "I'm exhausted!" Oh, the life of a preschooler... We're trying to keep C-man in line with his school work, so he's not in any sports right now.
My birthday was yesterday, but I'm not counting them anymore. We had a September birthday party with Greg's family Saturday. My b-day is on the 8th, Mav's is on the 12th, Marilyn's (Greg's mom) is on the 13th, and Chloe's is on the 29th. It's kind of been a rough week - my birthday without one of my kids and Mav's special day coming up. We couldn't decide what to do. We didn't want to not celebrate it. He's our baby and we celebrate all our other kids birthdays. We talked to the kids last night about what they wanted to do. They want to have a cake, then let go of balloons at the cemetery. I know there will be a lot of tears shed on that day, so I think it will probably just be us. If you'd like to remember him by sending up a balloon where ever you are, I'd love for you to send me a picture of it. I'm making some little notes to attach to our balloons and on the back of the notes I put the blog address and these CHD facts:
Anyone can have a child with a congenital heart defect. Out of 1,000 births, nine babies will have some form of congenital heart disorder.
Congenital heart defects are the most common birth defect and are the number one cause of death from birth defects in the first year of life. Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancer combined.
I don't know if anyone will ever even see these, but if they do, they'll be a bit more aware of CHD.
Here's why we're doing the balloons. We have a tradition that we've done with all the kids. Around their first birthdays we take them to have their picture taken with a cake and balloons. The pics were all taken at the same place with the same backdrop and the cake sitting on the same stool. It's fun to look at all of them at the same age and see how similar and different they were. We can see who was tallest by their relation to the stool height. They are hanging in the hallway. We won't be able to do that with little Mav, so these are our balloon pictures for his birthday. Here's my email address if you want to send any balloon pics: julesclarko@yahoo.com.

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