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.

Friday, March 6, 2009

Another sweet picture from Greg's phone. It looks like Carter and Maverick are both smiling for the camera. Mav's funeral was one week ago today. I had been doing pretty well today until I started looking at pictures. It just makes me wish things could've been different. If I think about things logically, I know he's better off now and not hurting or sick. It's just so hard not having him to talk to or touch or hold. Greg told me tonight he thinks Mav wasn't put on this earth to stay for a long time. He thinks he was put here to let us find out about my heart issue (more about that later), to help him (Greg) heal from his back issues, to raise awareness about congenital heart defects, and touch people's lives in the process. He may be right, but it's hard for me to process that a life could be meant for such a short time - that my baby wasn't meant to be my toddler, my preschooler, my school-age child, etc. It just makes me sad.

Some of you know about my heart, but many others don't. When I was about 3 1/2 months pregnant with Mav, I had an episode where my heart felt like it was racing and I almost passed out. This had happened one other time about a year prior. I went to the nurse practitioner after it happened the first time and she said to come back if it happened again. I told my OB doctor about both episodes at my next appointment. She wanted me to have a heart echo performed. I went to have the echo. I didn't hear anything back, so assumed it was normal. At my next OB appointment I asked about the echo and the doctor said it was fine. In between these two appointments we had found out about Mav's heart. When I got home from my appointment Greg said my doctor had called and I needed to call her back. I did and she told me the heart echo showed I had an ASD (atrial septal defect) and I needed to have a trans esophageal echo performed. It was scheduled for a few days later. To make a long story short, I have a 2cm atrial septal defect. It's a hole between the top two chambers of my heart. I've had it all my life. If this type of problem isn't detected in childhood, people usually don't have problems until they are in their 30's or 40's. That's when your heart has been dealing with it so long that you start to have symptoms (heart racing, fainting, palpitations). The defect has to be corrected. If not, you have an increased risk for stroke, pulmonary hypertension, and irreversible heart damage. Usually these defects can be fixed with a device that's placed during a heart cath (where they go in through the groin). Occasionally they are in a place in the heart where a device can't be used and they have to be fixed surgically. You know how our year has been, I'm sure you can guess which category mine falls into. The surgeon here wanted to do it through the sternum - open me up through my breastbone. I saw another one when I was in Dallas and he does the surgery through an incision under the right breast. I'll be going to Dallas at some point to have surgery. If I wasn't pregnant with Mav and hadn't seen the doctor I did, who knows if this would've been caught in time to prevent irreversible damage or stroke. It's crazy, I know. My heart needs to heal from losing Mav before I'm ready to tackle this surgery. So, there's another thing we've learned from Mav. Love you all - jc

2 comments:

Anonymous said...

Juli, what a year you've had. But I'm glad you shared about your heart. I'm also glad you found it as soon as you did. Things do happen for a reason, we all have to believe that. I will hold you and your family in prayer. Hang in there.

Love,

Sherry

Brenda Thompson said...

What a precious picture of Carter and Maverick.

And I LOVE the picture of Chloe from a few days ago!! I'm sure you are right too - they are all good therapy for you right now.

And keep posting. It is obvious from the comments that keep coming, that we are all still keeping up with you all. And praying for you too. Maverick definitely brought a world together through his life and your family's life.

Love you!
Brenda