Baby Maverick

This blog was created to keep family and friends updated on what's going on with the pregnancy, birth, and surgical plan for Maverick. We'll also be able to keep everyone updated during his surgery and recovery and hopefully be able to show you some cute pictures of him, Maddie, Carter and Chloe along the way.

This was the original intent; however, when we started this blog we had no idea the twists and turns our lives would take. Our sweet baby Maverick was born September 12, 2008 with Transposition of the Great Arteries, ASD, and VSD. We expected to have a baby boy to bring home three to four weeks after his surgery. He had numerous complications after his arterial switch and fought through many that would have taken the life from an adult. He passed away February 24, 2009 - without ever coming home.

This blog is now a place I share my feelings, work through the grief, remember Maverick, and try to make sense out of our life without him. I hope in doing so I am giving a name and a face to babies everywhere born with congenital heart defects.

Thursday, March 5, 2009

Today was a better day. Chloe stayed home with me again. I think she's good therapy. I went to lunch with a couple of my work friends today. They drove all the way to Shawnee and we went to my favorite lunch spot - Benedict Street Deli. Chloe got her usual - fruit with whipped cream, then a cookie "WITH CHOCOLATE AND WHIP CREAM!" she said, and she had to have a little cup of coffee with lots of creamer. I was going to take a picture, but left my phone in the car. She is so funny. We were in the drive-thru at Starbucks a few weeks ago and as I'm placing my order she starts screaming, "COFFEE-MILK! I WANT COFFEE-MILK!" So, I got her a vanilla latte with a half shot in it. She loved it.

Today I received an email today from another heart mom in Dallas. Her baby arrived shortly after we left Dallas. He had some of the same complications as Maverick. He passed away the day after Mav and their funerals were the same day. She said she had a talk with her little guy before he died and told him to go find Maverick in heaven. She said she knew they would be best friends. They were both such little fighters. I thought that was sweet. If you think about it, people are losing their children everyday. It's hard to imagine - everyday someone, somewhere is going through what we went through last week. This has made me a much more compassionate person.

I told you in an earlier post I would fill you in on the things I've learned through this process because of Maverick. This one is more directed toward my healthcare friends. I've learned "chronic" is not a nice word. For those of you not in the medical field, "a chronic" is a patient who has been in the hospital a long time or who frequently has to be admitted to the hospital. It's a term I've used many times myself. I remember the first time someone referred to Mav as a "chronic." It was in Dallas - it was one of those memories that stick in your mind. I knew in my mind that his condition was turning into a chronic condition, but to hear someone say it.... It broke my heart. Maybe this isn't true for non-medical people, maybe it wouldn't upset them. I don't know. Then, as we were arranging the transfer from Dallas, I was on the phone with a person from OU and they referred to Mav - my sweet baby boy - as "the chronic from Dallas." OUCH. So, for all of you out there using that term, keep this little scenario in your mind. Your "chronic" is someone's bundle of joy. So, I'm sure you're thinking, "Well, what else would you call them?" Maybe extended-stay patient, maybe complex-issue patient, maybe just baby Clark or whatever their name is. Just something to think about.

I still miss little Mav, but I think that goes without saying. I'm not feeling as lost during the day as I was since we've been in a new routine for several days. Greg asked me today what I wanted to do with all Mav's stuff. I told him I wasn't ready to do anything,yet. As for all the breastmilk in the freezer, that's another story. My mom checked on the donation process for me when she was here. I think you have to fill out some paperwork and have some blood tests drawn. Maybe checking on that will be on the to-do list for tomorrow. I know it might sound crazy, but I would rather just give it to someone who wants it or needs it. Send me a message if you're in that category and can come pick it up.


Laura said...

I have been following your blog for a while...I have a CHD baby as well. I totally understand the "chronic" issue and the words that are sometimes used by caregivers. Most caregivers are so compassionate, but some do forget that these sweet babies are OUR babies! I'm praying for you and your family.
Laura Henley - we blog at

Anonymous said...

What an amazing slide show, the songs just stick with me. We are still thinking about you here in Dallas. Another heart mom passed this on to me and I thought I would pass it on.
Lots of love,
Vanessa Blutrich (Amazing Little Hearts)

Anonymous said...

Thinking about you my beautiful friend. I want you to know that I treasure every little lesson I can get that will make me better at taking care of my patients. I have had a lot of great teachers throughout this year, but Maverick might be the best one yet. I am going to start calling these little pearls my Maverick rules. And if anyone asks me why, I will get to tell them all about him. I love you friend. Always here for you. Praying for you everyday by name.

Anonymous said...

I love what "K" said about Maverick Rules...what a beautiful way to remind us to look through a different lens.
Thinking about you today, friend. Thanks for continuing to journal your days. The nuggets of truth are pure gold.