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.

Monday, April 6, 2009

Pardon my language,

but this just sucks. This was little Mav from February 18th. The day of his attempted heart cath. Greg and I held him before he went for the procedure. We took quite a bit of video as well, and he just looked scared. He was looking around the room like, "What's going on?" I really think he knew something was getting ready to happen.

Today has been hard. The weekend went okay. The kids and I went to Mav's grave yesterday, and it was actually a bit easier. Maybe because the kids were with me - I don't know. Greg got the kids ready for school and let me sleep in. The morning was fine, despite the fact that I had to call the billing office of a physician group for one of Mav's bills. Next, I had to call the insurance company and fax the bill to them. I held up through all of that. Then, this afternoon I was walking through the living room and saw one of Mav's hats in Chloe's shopping cart. It was one he wore a lot in OKC. I picked it up and smelled it and started crying. I put it in a ziplock bag with his monkey and frog (thanks for the suggestion). Later this afternoon, I called the cemetery to find out the dimensions and restrictions for a headstone for Mav's grave. Poor woman on the phone - I could barely speak. I was fine when I made the call, then when I was placed on hold they had this recording about the services they offer and blah, blah, blah. It just hit me like a brick. After I got off the phone I wanted to go through Mav's things. Most of his things are in the crib. We hadn't gone through any of them. Hospital papers, duoderm, wound gel, his gecko and puppy, birthday banners from when he turned three months old. That was enough. Greg called at just the right time and told me to stop. He said there is no timeline of when we have to go through his things or take the crib down. He came home and we talked. Thankfully, we usually don't have bad days at the same time. But we both have them.

Last night we were watching tv. There was a show on about a couple who had quads and it had some of their NICU stay on the show. I always like to watch those types of shows - I guess it's just the NICU nurse in me. After it went off another one came on. It was about people who didn't know they were pregnant until the baby was already here or close to being born. I've always had a hard time believing those stories. A couple of the women had been smoking and drinking throughout their pregnancy. Their babies were FINE. We had finally heard enough and changed the channel. It's just so unfair that so many people who drink, smoke, do drugs, or don't even want a baby have a completely healthy child. My mom always said, "Life isn't fair." Nothing has changed.

I started writing in my journal again today. I'm pretty open here, but there are some things I just need to keep to myself. I wrote some scripture cards when Mav was in the hospital, and they fell out when I opened the journal. Here are a couple of them:

Those who hope in the Lord will renew their strength. They will soar on wings like eagles, they will run and not grow weary, they will walk and not be faint. Isaiah 40:31

And we know that in all things God works for the good of those who love Him, who have been called according to His purpose. Romans 8:28

It is so hard to see the good on my side of the equation. I read through the entry I wrote the day before Mav died. Most of it was a prayer. I may share it at some point, but not tonight. It just seems like things start to get a bit easier, then a day like today comes along. Praying for brighter days to come. Love you all, jc


Anonymous said...

I definitely agree that life is unfair. I have a hard time watching those shows as well.
Thank you for sharing your thoughts, it helps me and I am sure it helps so many others that follow your journey.
I hope for many easier days. You are always in my thoughts.
Vanessa Blutrich <3

Bill and Mary said...

I am sorry that yesterday was a rough one for you. And regarding those shows, they always bother me too. I know life isn't fair, but sometimes, I think it's a bit much. You are never far from my thoughts and always in my prayers. Hugs and God bless.

Anonymous said...

Juli and Greg:
My prayer tonight is that you will have peace and comfort. I know that you have brighter days ahead. Thank you for being a great and strong witness to our family.

Jenn S

Anonymous said...

i'm so sorry for the rough days that ambush you. it must be frustrating to feel like you are making progress one day at a time and then all of a sudden there's a slide. but greg is right and there's no timeline, no hurry. i know you are both hurting, but you are lucky in that you are able to be there for each other despite your own pain. that is such a gift for each of you as well as your kiddos. wishing you continued strength, karlin

Anonymous said...

Dear friend,
I can't imagine your pain right now. I only pray that God's comfort and strength will find you, and bring unspeakable peace.
I'm glad that you found the scripture cards...may He be your Rock in this overwhelming tide.
You are loved,

Anonymous said...

I was visiting Dejah this weekend and thought about you. I have been praying for you and your family and hope to meet you soon. I am one of those Mom's who always told the kids life is not fair and they hated hearing it just ask Dej. I know there will be better days for you soon. Just keep trusting God and he will bring you through this.
Love in Christ

Laura said...

you are in my thoughts and prayers. praying for better days!
Laura Henley

Anonymous said...

One of my favorite songs every is "If I could just sit with you" by MercyMe. If you know it repeat the corus to yourself as a prayer, If you don't know it, listen to it if you can. I hold onto this song in times of need when I know I need God and his strength most.
Love y'all