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, February 10, 2009

A bad gas was the way the morning started. The vent rate was increased to 30. His white count was actually down a little (29), but he spiked a temp in the afternoon. Cultures were drawn, but I think it's probably just more of the same infection. All I can say is at least I was prepared. Dr. G had written auto-wean orders yesterday (to wean his rate by one breath every 6 hours) and normally I would be thrilled. However, yesterday I asked him to stop. I told him I knew he would get sicker after the line was pulled and was worried it would be too much for him. So he d/c'd (stopped) the auto-wean. I was expecting today to be worse than yesterday, because that's just how Maverick responds. I remember a day back in December when I went in to see Mav in the morning in Dallas and they had increased his vent rate by 2 breaths per minute and I started bawling. I guess I've just gotten to the point where I realize he needs support when he's sick and he'll wean when he feels better. Hopefully that will be in a few days. It's gotten to the point where I sometimes feel like an observer watching all that's going on, but hardly believing this is my life. I know that God is good and he doesn't give you more than you can handle, but come on now...

They are only getting CBC's (blood counts) on Mondays and Thursdays, so I won't be able to tell how he's doing number-wise until Thursday. That's always been something that's helped me feel better about his progress (or has made me apprehensive when it's not going down). So, I'll just keep a close eye on him (but I always do that, anyway) and pray for the best. Speaking of praying, thanks for your thoughts and prayers - whoever you all are. I know a lot of you, but I'm curious who some of you loyal readers are. There are places listed on the web-tracker that I've never been and don't know anyone who lives there. I'd love to hear from you - you can do an anonymous post and sign your name in the text (that way you don't have to create an account). If you want to keep your anonymity, that's fine, too. It seems like Mav has quite a few people pulling for him.

I was talking to one of my friends the other day and we got on a subject that I'd like to share. I just want people to know that we're not blind to this entire picture of what's going on with Maverick. I've done countless hours of research on all his conditions and have searched for treatments for them all. We're prepared for the battles we'll have to face knowing that much of his future is uncharted territory. No one has ever heard of a baby with PLE, no one has ever heard of a baby with critical illness polyneuromyopathy, no one knows why his kidneys quit working. All I know is God gave him to us for a reason. He knew his momma was a hard-headed find-the-answer optimist and his daddy was the perfect one to get him moving again. When I look in those big blue eyes (with the longest lashes I've ever seen), I know he's a fighter and he's here for a reason. He's a smart boy and knows who we are and knows what's going on around him. His nurse and respiratory therapist said he smiled at them the other day when they were retaping his tube (see, I'm not making it up), and he's getting more movement every day. It's him and God that keep me hopeful. One of the cardiologists asked me the other day if the GI doctor gave me a prognosis for the PLE. I respectfully told him, "No, but I didn't ask. I've done all the research on it, but the truth is any one's prognosis is just their educated guess and my educated guess is just as good as theirs because no one has seen it in a baby." Then I asked him "What chance of survival would you have given a baby to make it through all that Mav has been through?" He just smiled, nodded and said, "You're right."

When we found out we were expecting, the thought never entered my mind that we would have a baby with a heart defect - or any defect. I somehow thought I was immune to those types of issues since I took care of sick babies on a daily basis. What was the chance? To have a baby with a heart defect is one out of 125. To have a baby with TGA the prevalence is 20-30 per 100,000. When we met with Dr. Mendeloff before Maverick was born, I remember him telling us that the survival rate for arterial switch operations was 95% with the 5% mortality coming from difficult coronary artery anatomy. I know I didn't expect our baby to have a difficult coronary artery anatomy. My point to all of this is that statistics mean nothing to me now. For an individual, it's just as easy to be in the 5% as it is to be in the 95%. I haven't asked anyone statistics since that day.

Enough for tonight - more tomorrow. Love you all - jc

PS The memory on my phone is full. I need to delete some stuff so I can take some more pics and send them to the blog. I'll send one tomorrow.


Anonymous said...

Hi Juli,

Glad to hear you venting...does the soul good - and who better to listen than those that love and care about you and your beautiful family. Heck with statistics. Never was good with those in school anyway. :) You are right, Mav is here for a reason and he is a very lucky boy to have you in his corner. Hang in there.

Oh and you probably know where I'm from...Southern Maryland. It probably shows up as Lusby, MD.



Anonymous said...

You are an amazing woman and mother. Your kids are so blessed to have you and Greg. You are so right, it is no mistake that Maverick is still with us and that God chose you to be his family. We continue to pray knowing everything is possible!

Anonymous said...

Julie, I read your comments and pray for Mav everyday! I am Melissa Laiming's mother and live in Burnsville, MN. When I was down there for Halloween I had the privilege of meeting your 3 children who went trick & treating with us! They were so precious and wonderful! I hope someday to meet Mav and you! Keep the faith! God loves you all! I will continue to remember all of you in my prayers!
Connie Benson

Anonymous said...

Hello Juli,

There is not a day that goes by that mom, Granny, and I are not reading and talking about what your blog says, and how Mav is doing. Your family has a special place in our hearts. Just know that we continue to pray for you guys every day.

Jenn Stepp, Jana Bryant(Boley), and Doris Boley (Norman and Ardmore)

Anonymous said...

Hi Juli,

I still check your blog everyday to keep up with Mav's progress. He is an amazing little boy and has endured so much yet keeps fighting. Your strength and patience is unbelieveable. I do think Mav was given to you for a reason and maybe for reasons you'll never know but I am sure God has a plan. Maverick is blessed to be born into such a great family. My thoughts and prayers continue daily for this little guy!
Terin Morris

Anonymous said...

No one can say it better!! You are absolutely right about it all. You are an inspiration to all who know you and your family. Keep the faith, God knows all and sees all and is holding you all in his arms. You know he has already shown how wonderful Mav is, and how he has touched so many lives.
How great is this story that you are sharing!

Anonymous said...

You're right on the statistics, Julie. A person can be in the 5% or the 95%, it doesn't matter when its your child because you just want them to get better. We know the anxiety with each blood gas and lab test and procedure as we only experienced that for a short time. Each day we think about you guys and Maverick and pray for healing.
Love Joel, Kelly and Conlan

Anonymous said...

Greg and Julie
Our family prays for you daily. I want you to know I really enjoy seeing your big kids every day at school.
Love and prayers
The Schoolers

Anonymous said...

Hi Juli,
I have been reading your blog for a while now. I found it through my cousin Dovie and sister Terin. I am not for sure if you would remember me, but I use to teach 1st grade at your kids school, I know stay home with our 2 kids. But I just wanted to say that you and your family are amazing! You are such a great example for your kids, you show them how to have strengh, love and trust in God! They are very lucky! Maverick is such a strong baby, which I'm sure he gets from you!! We are praying for you, your family and of course baby Maverick!
Shelby Carter, OKC

God is able to do immeasurably more than all we can ask or imagine. Eph 3:20