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.
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.
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
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
I am a mother to Maddie, Carter, Chloe, and of course Maverick - who is now in heaven. I am wife to Greg. I am an RN and worked for Mediflight of Oklahoma transporting critically ill neonates throughout the state prior to Mav's birth. I am currently taking some time off to enjoy my kids before I start nurse practitioner school in the fall.