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, May 6, 2009


This is another pic Holly sent me.

I've had better days and so has Greg. We talked tonight and he said I just need to be honest. He told me I'll share 8 of 10 things, but the two I leave out are the ones that are the most important. Mav's life, this blog, and our experience won't help anyone else going through a similar situation if I try and paint a rosy picture everyday. In fact, when I've looked at some other blogs where people have lost babies or children and they sound happy and normal and talk about how great the world is it makes me mad. Maybe mad is not the best term, but I think, "Are you real?" I'm not talking about throwing a pity-party for myself everyday, and I'm not looking for sympathy. I'm just using this to express my feelings. Maybe someone going through the same thing may realize they're not crazy. Most people want you to get over it and move on with your life, but most people haven't been through something like this. It makes them uncomfortable.

So, today I was so tired from not being able to go to sleep until late that I came home from taking the kids to school and crawled back into bed. Chloe and I slept until about 10:30. Greg didn't sleep at all last night, so he tried to go to work this morning and ended up back at home as well. After we got up, I went through some mail and wrote out a few bills. I had some phone calls to make - still trying to get the correct insurance information for some of Mav's hospital bills. I'm hoping this took care of it. If I'm being honest here, I didn't even take a shower today.

This afternoon I received a phone call today from my Aunt Jeanne. She is a Methodist minister in New Jersey. She always has good advice for me. She said that I have been on her heart a lot lately. She asked how I was doing. I told her it's just day-by-day. She asked me if I felt like praising God or listening to praise music and singing. I answered, "No." I told her I wasn't even able to listen to music in my car until about a month ago. We talked for awhile and she told me I should do it anyway. I'll try. She asked me about praying and I told her I can say prayers with the kids, but the only thing I can usually pray right now is "Lord, help me." She, too, told me to be honest and to write down how I'm getting through this. She, like many others, encouraged me to write a book. She said, "You connect with people through your pain." She advised me to give in my area of need and said that would help with healing. She said, "You get into positions with your talents, but it's your character that keeps you there" then went on to tell me how much character we have built going through this with Maverick. We talked for quite awhile and we both cried. She told me someday I would understand why - that God would reveal it. She's really an amazing woman.

I can honestly say before Mav came along, I never understood the love of mothers of sick or handicapped or mentally challenged children. I knew they loved their children, but usually thought of how difficult their lives were. How did they keep going, how did they not lose it? Now I understand. It's almost as if it's easier to love these children. I don't really know how to explain it. I never even saw Mav as a "special needs" baby. He was simply our baby and I would do whatever it took to get him home with us.

Mother's Day is coming up this weekend. I'm really not even looking forward to it. At church, we're having baby dedications. Hmmm... I'm very happy for all you that have happy, healthy babies; but I know if I'm there I'll just be thinking about how we should've been up there with Mav, and I'm sure I would start bawling.

Back to today... I called the Ronald McDonald family area at Children's Hospital this afternoon to find out about the rooms. All the ones they currently have are taken, but they are talking about adding more rooms. She took my name and number and said she would call when they get to that point. The family or organization pays for the entire build-out of the room, which is usually around $10,000. I think we could raise the rest somehow. I'm still processing all that. I told the kids we would go up there one day this summer and take a tour.

I was so glad the rain finally stopped this afternoon. Carter was able to go to tennis camp. Maddie decided to join in at the last minute. They both enjoyed it.

This evening we witnessed a baby bird take its first flight. We have a hanging basket with a fern in it by the back door. We've watched as the nest was built, filled with eggs, then filled with tiny furry creatures, and now there are little birds taking off from it. The kids always like to check on them as we're coming or going. It's been pretty neat to watch.

Well, it's late, once again. I suppose I should try to get to bed. Love you all, jc


Anonymous said...

Julie I am so thankful for your honesty. I know our situations are night and day apart, but I feel a little more "normal" dealing with my feelings reading your blog. I know that someone someday will read what you have written after losing a baby or child and be helped through. I pray this will be a better day today.

Kaylyn said...

I hope you saw my comments earlier about the Ronald McDonald rooms. Have a beautiful Mother's Day!

Anonymous said...

Hi Juli,

I've been away on a business trip and have been getting caught up with your posts since my return.

I hope your good days are more frequent while your bad days continue to decrease. Sounds like you are certainly keeping busy.

Was so glad to hear Maddie's heart was fine..what a relief that must be! :)

Thank you for the card and note. The card was very touching. I will keep it in my scrapbook - not only to remind me what a beautiful boy Mav was but to also remind me of what an incredible family you have.

I think the room at Children's is a wonderful idea.

I hope to come see my boys in Oklahoma this fall. Maybe we can make a lunch with Teresa...if you aren't busy studying by then!



Juli said...

Kaylan, I saw your comments. Thanks so much for your input. It's nice to hear from someone that has been able to use them.

Sherry, I'd love to have lunch. Let me know when.