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.

Wednesday, February 25, 2009

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I'm posting today knowing this may be morbid to some of you, but this is the first time since the day Maverick was born that I held him without any tubes or wires attached. It's the first time in a long time that we've seen his face without tape on it. I know that you all have shared in many of our ups and downs and realize that many will not be able to go to the funeral or see Mav at the viewing. I posted this for those specifically. The outfit he has on was the one I was planning on taking him home in, and he still had his signature mohawk. Nothing can prepare you for seeing your baby that way. It was so eerie to touch his cold skin and feel how different he is now. I know that he's in heaven, but this little body is the only tangible remainder we have of him now and I just wanted to hold him as long as I could.

Today was busy and difficult for us. We had to go to the funeral home this morning and finalize everything. We then went to the flower shop, where I cried because all the arrangements looked so depressing. The florist is going to do things a little different for Mav. After that, we went to the church to finalize things there, then back to the funeral home for Mav's viewing.

The funeral will be Friday at 2:00 at Immanuel Baptist Church 1451 E 45th Street Shawnee, Ok 74804. Viewing will be at Cooper Funeral Home 210 W Walnut, Tecumseh, OK on Thurs Feb 26th from 11:00am to 8:00pm and on Friday from 9:00am to 12:00pm.

Just to give you a little background on myself, I hate funerals. I have only been to a handful of them in my entire life, so it is very difficult for me to go through this process. When I do go to funerals, I have to find distractions (like counting ceiling tiles or lights or panels on the walls, etc.) to keep myself from bawling the entire time. Seriously, I could go to a complete stranger's funeral and cry the entire time if I didn't distract myself. So, with that said, we're trying to keep things very nontraditional - no hearse, no limos, no little depressing fliers, no Amazing Grace (although I do like the song, but it just makes me cry). If you're planning on attending, please wear something cheerful. Like I said before, please just tell me something positive about Mav instead of telling me you're sorry. If you are one of our medical friends or staff who've cared for Maverick, there will be special seating for you.

To close for today, I would like to thank everyone who is helping us through all this. We've had such an outpouring of love on our family and we are so thankful for each of you. In lieu of flowers, I would like to raise funds to go toward the purchase of a 3-D heart echo machine for Children's Hospital of Oklahoma. They had one in Dallas, and I could tell a huge difference in the quality of the pictures. Maverick had to have a trans-esophageal echo here (where they had to sedate him and place a tube down his esophagus to see his heart) and the quality of the picture was less than that done with a non-invasive echo in Dallas. This machine could potentially lessen the frequency of invasive procedures on babies like Maverick. These machines run in the neighborhood of $400,000. I don't know how close we could come to meeting that goal, but it doesn't hurt to try. If anyone who's reading knows how to start up some kind of fund for that type of thing, please let me know.

One more thing, our church will be having a blood drive in Mav's honor sometime in the near future. I'll post more as details become available. If you live out-of-state, go give some blood and help save a baby! Thanks again. We love you all - jc

3 comments:

Anonymous said...

Juli,
You are such an amazing person. I have been reading your blog for the past 4 months. My aunt told me about Maverick. She is a member of Immanuel Baptist Church in Shawnee. I have a son with TGA who was born on September 10, 2003. I have learned so much by reading Maverick's story. It is obvious to me where Maverick received his strength…his mother. My thoughts and prayers are always with you, your family and Baby Maverick.
With all my love,
Lezlie Segovia

Bill and Mary said...

I just happened upon your blog by reading another Mom's blog. I just wanted to say that I think you are amazing. Your little Maverick is beautiful. Thank you for posting that picture of you holding him, it's so powerful. I don't think of it as morbid at all. Your strength inspires me. Much love and many prayers for you and your family. I pray that God holds all of you close to him during this time. I know He is holding little Maverick in Heaven.
~Mary Brown

Stephanie Walker said...

When you finally get to heaven guess who will be standing there waiting for you with the most AWESOME mohawk know to man? He's so beautiful and I'm jealous he gets to hang with Jesus! I barely know you at church but I do know your family is awesome and God has blessed each of you. I'm sorry I couldn't come to the funeral. I will be giving blood though!I am glad you said to appreciate the time with your children. It's what I take for granted everyday. I know God has answered my prayers for your familya nd is continuing to do so. LOVE YOU ALL! Stephanie & Ben Walker, Lily & Ivy.