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.

Tuesday, March 3, 2009

Mind-talk and 3D echo information


Isn't she sweet? This is little Chloe. We were going to spend the day together, but she wanted to go to "school" instead. She attends Mother's Day Out at our church, and loves it. Greg went back to work, and once again, I tried to stay busy. I had coffee at a friend's house this morning with ladies from our church. I had lunch with a friend then went to look at all the pictures we had taken the week before Mav was born. I looked happy then. Honestly, I was nervous, but not too worried about Mav's birth or surgery. TGA is usually "fixed" with one surgery and the babies usually do fine. The timeline in my head had us going home in three weeks - tops. I'm such an optimist. I remember meeting another heart mom in the PICU waiting area shortly after Mav's surgery. Her son had been there two months. I remember thinking, "WOW, I can't imagine. Glad we won't be here that long." That was a gross under-estimation on my part.

I picked up the kids from school, then we had dinner with friends at their house. In between school and dinner I was the chaufer - taking Maddie to a tutor and Carter to a friend's house. When we got home this evening I was overwhelmed. Too much, too soon. It's been one week today. In one way it seems like an eternity ago, but most of the time it seems like yesterday. I still have the memory of his last moments running through my mind, and the song, "Godspeed, Little Man" playing in my ears. I imagine it will be that way for awhile.

The things that Mav taught me, namely to enjoy each "normal" day with my kids (I'll tell you the many others in another post - I actually have a list in my journal), have been hard to incorporate in my life right now. I wonder why I can't, but know why I'm not. A friend who lost a baby told me she wondered why, if she believed heaven was real, was she so sad. She passed on to me that God gives us an innate bond with our babies and when they die, that bond doesn't go away. I loved her words. They made me feel not quite so selfish.

Okay, so enough of my mind talk. It's been brought to my attention that Children's Hospital has been receiving donations in Mav's name. They don't know what to do with them. They are going to get them to me and our church will be the holding place for the funds for a few months, or until donations stop coming. Then we will give the lump-sum to a non-profit company that will purchase the 3-D ultrasound machine - or hold the money until we meet our goal amount. I don't have an exact figure, but it's in the neighborhood of $400,000. This was the best way to do it since I didn't have time to set up a non-profit specifically for this purpose. The non-profit is called Cavett's Kids and is run by a friend of mine, Danny Cavett (he's one of the hospital chaplains). He has assured me that the funds will only be allocated for their intended purpose and said he would give full disclosure of the account balance information to me. I completely trust him and have known him since I was a new nurse back in '95. So, if you'd like to help the address is:

Immanuel Baptist Church
1451 E 45th Street
Shawnee, OK 74804

Make the check out to the church and write "Maverick" on the memo line.

The whole story behind the 3-D ultrasound machine is... When Mav had his heart echos performed in Dallas, I was usually in the room. I watched the screen as the tech performed them - getting the pictures by placing the probe on his chest. The pictures were crystal clear. The only time Mav had to have a trans-esophageal echo(the knock-him-out-and-put-a-tube-down-his-throat kind) was in surgery. When we got to Children's here and his first echo was performed, the quality of the pictures on the screen was much poorer. Even when he had the trans-esophageal echo, the pictures weren't as clear as they were in Dallas with the trans-thoracic one. I'm in no way qualified to read echos, but even I could tell a difference. I commented to the ultrasound tech about the above. She said she knew what I was talking about and said they have been trying to talk "the powers that be" into getting the more advanced machine, but haven't been able to get it. I told her, "When we get out of here I'm going to try to raise money to get that machine." So, there you have it. The only thing different is I thought I would have my baby home when I started this process. He won't benefit from it, but hundreds of other babies will.

In closing, thanks again for your thoughts, prayers, flowers, plants, and gifts. I'd also like to thank you for your posts. I enjoy hearing from all of you and am intrigued by the posts from those who live miles away and don't even know us personally. They encourage me. They let me know Mav did make a difference in his short life here. Love you all - jc

6 comments:

The Aldrich's said...

hey, juli:

praying specifically for you and your family to have peaceful sleep . . . wanted to share this:

Have courage for the great sorrows of life, and patience for the small ones. And when you have laboriously accomplished your daily task, go to sleep in peace. God is awake.
--Victor Hugo

love, rebekah

Anonymous said...

What a cutie Chloe is! Love her smile. I'm glad you posted how to make check payable. I'll put one in the mail. I'm sure all the babies and Moms & Dads that need that machine will be so thankful that you started the process to get one for the hospital.

Just remember to take one day at a time. Don't rush yourself.

Love,

Sherry

Angela said...

Juli -

I have been praying for you from the very beginning and, along with many others, have been following your blog carefully, sometimes skimming over the medical terms that only confused me :), but reading straight through to your heart. I do appreciate your sharing this journey with us and being so open and transparent. Maverick's life has touched mine so deeply. Because of him, I treasure my baby girl so much more. I understand that my daughter belongs to the Lord and at any moment he could call her back, but for right now, this moment, then the next, I'm going to appreciate the fact that she is right here with me. There is nothing more precious than a tiny life.

You are continually in my prayers.
Angela R.

Bill and Mary said...

Hello again. I smiled looking at Chloe's picture, she is so cute! I wanted to just say that Mav did make a difference...he made the world a better place simply by being in it. His fighting spirit is something for adults to aspire to. He, you, and your family have touched people hundreds of miles away. And that is an amazing thing. God bless.
~mary brown

Anonymous said...

You are on my mind as I go through my day. Mav has made a difference in so many lives. Your friend was right that the innate bond doesn't go away. This is a good thing. He will always be with you. I watched the slide show tonight. How absolutely precious. I love you guys. Don't feel pushed to "being back to normal", you are doing well. I admire that you have been able to get out of bed. Love, Cousin Jenna

Dejah Quinn said...

Miss Chloe is a doll baby!