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.

Sunday, January 25, 2009

Resting with the animals

Here is Mav relaxing today. He had a good day!!! His white count was down to 20 and his CRP was 24. He is down to a rate of 12 on the ventilator and now they're weaning his pressure support. It started out at 18 and now he's down to 14. Dr. Gormley actually said we may be extubating soon if he keeps this up!!!! It's nice to not be the only one who thinks it will be happening. He's still on the cycler for dialysis and I'm going to talk to the nephrologist tomorrow about the plan to get him on a more home-friendly schedule. They're going to try to get the new formula sometime this week and give him more calories in less volume. It has all the extra good stuff babies need. I'm hoping the new formula will help with the frequency of his stools and help his little bottom heal. Mav has a venous ultrasound tomorrow to see if he has any blood clots in his legs since his platelet count keeps going down. He had one in his left groin from a previous central line. We'll see what that says. He's beginning to move a little more. It seems like he gets stronger everyday. The nurse was suctioning him today and he got so mad. He had his arms and legs going. A little adduction of the hips, a little flexion of the knees - not great big movements, but movements. More baby steps.

I went to see my new niece today. My sister had baby Addison on December 23rd. She was five weeks premature and had to stay in the hospital awhile herself. She's doing great now. I got to feed her today. My sister, Heather, wasn't sure if I'd want to. I said, "Are you kidding? I haven't been able to feed Mav yet. I want to feed a baby!" She was so sweet. Maddie was with me and held her, too. It's driving her crazy that Mav is four months old and she hasn't been able to hold him yet.

Well, enough for now. Thank you all for your thoughts and prayers - they're helping us get there. Love you all - jc

7 comments:

Dianna said...

Oh I just love the little guy! I am so grateful that he is doing good...he is in our constant prayers for complete healing. See you very very soon..:O
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Anonymous said...

Go, Mav, Go! We are rooting and praying for you like crazy. We LOVE all the good news and are giving God all the praise.

Praying for continued strength and joy in the "little things" (that aren't little at all).
Love,
Amber and Crew

Anonymous said...

Looking good! Love Mav's socks. I have a pair just like them...so comfy :)

Glad to hear he gave the nurse some heck...shows he's getting stronger!

Good to hear that Addison is doing well too.

Sherry

Lindsay said...

I'll continue to pray for Mav that he does well with his weaning. I'm so happy that he's making a turn around the right corner. Much love to him and the family!

Anonymous said...

Yeah for Mav, what a God thing. He is such a miracle. Those are such great things to hear and what good news to be extubated soon if he continues in this direction, YEAH!!!!! Baby steps are the best. You all are still in our thoughts and prayers and we love you all. please let us know if you need anything.
the Huffmans

David said...

Hi Clarks,
So glad to see Mav's moving in the right direction. What a sweet little guy! I'll be sending positive extubation thoughts your way!!
Love,
Meredith

Laura-Marie said...

Hey there! I didn't realize you guys had moved Maverick to Oklahoma City, but that's so nice you are closer to home. I was actually planning on visiting you this Thursday, I have a Dr. appt at Medical City. Great news that he is weaning off the vent, we will keep praying that he will keep getting stronger and healthier! Hang in there, you may just be on the home stretch! Lots of Love to you all!