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

Honestly

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

Tuesday, May 5, 2009

Lunch with the Girls

Here some of us are at lunch today. It seems every week some can make it and others can't, but we always have a good time. Have I mentioned lately what great friends I have? Seriously, I'm a lucky girl. My friends help me laugh.


Yesterday evening I had a friend bring by a big tub of clothes for Chloe for this summer. It was like Christmas! Friends, these are nice clothes. This friend of mine is always dressed to kill, and her daughters are too. I'll be posting some pics of her in these I'm sure. Thank you so much, G - she loves them.


This morning I had a chiropractor appointment and I've been released - well, I'm just supposed to go back in a month for a check. My neck and shoulders feel so much better and I'm not having many headaches either. After that, Greg left for work and I took Chloe to Mother's Day Out. I went by the post office and then went to lunch with the girls. We can sit and talk for hours. We keep each other laughing and it gets my mind on other things - at least for awhile.

The kids helped me make dinner tonight. We had breakfast, kind of. I sent Maddie into the store to get biscuits and she came out with crescent rolls, "They were on sale mom!" I guess I asked for that one with all my recent bargain shopping. So, the menu consisted of eggs, bacon, and crescent rolls. No one complained. Greg even told Maddie he likes them better, anyway. After dinner we made worms and dirt - where you make chocolate pudding and cover it with crumbled Oreos and add a few gummy worms for effect. They had fun and it kept us all busy.

No big plans for tomorrow. Chloe and I will probably try to get caught up on some things around the house. My closet is awful, but I don't know if I have the energy to tackle that project. I'm hoping the rain will stop and we'll be able to plant Maddie's veggies tomorrow. Her grandma and grandpa heard she was wanting a garden, so they brought us some very large tubs to plant them in. Carter was supposed to have tennis camp this week, but so far it's been rained out. Maybe we'll see the sun tomorrow. Love you all, jc

Monday, May 4, 2009

Baby Mav

He didn't know where to look..... Me or the mobile!!! These from today were all sent from Holly. This makes me want to say a big "Thank You" to all of you who sat with Maverick. He was so blessed to have so many people who loved him. He loved to have the attention, and to have someone there to wind that mobile! We are so blessed to have all of you in our lives.

So alert

New Mav Pic, Maddie's Heart, and Donation Info

Thank you, Holly, for sending these pics of Mav from the night you sat with him. They are great. I'm just sitting here bawling looking at these sweet pictures I haven't seen before. I love this one, too. Actually, I love them all.

We had Maddie's cardiology appointment today with Dr. Ward her heart looks good. Thank God! No structural defects. They are going to have her wear a holter monitor for about a month after school gets out to try to "catch" the episodes she's complaining of. We talked to him about my issue as well, and he's going to take a look at the echo I had before Mav was born (the TEE). I'll find out what he thinks in a few days. I talked to him about the money raised by everyone for Maverick (for the 3-D ultrasound machine). There's good news; the powers that be have approved the money for the machine - and I actually think they're getting two if I remember correctly. I asked him if the cardiology department had any other needs that would help other patients. He said they could definitely put the money to use, but thought we might want to check into the Ronald McDonald floor at Children's first. They have converted part of a floor in the hospital into an area for families. They have a few rooms - all of which have been named in memory of different children. Their families provided the funds and came up with the ideas for decorating them - from what I understand. This area was new when we were there, and I went to look at it once during the ice storm, but they were closed. I'm going to call tomorrow to find out more. We have around $2,500 that has been given and is still being held by our church, Immanuel Baptist. I so appreciate all your donations, and hope everyone who donated will be okay if this is the route we decide to take with the donations. Your feedback would be appreciated. I'm not even sure if they have other rooms left to "name", but that was just an option Dr. Ward thought we might be interested in. Most importantly, I'm glad they have the funding approved for the 3D-echo machines. That will be so nice for other babies and children.

Tonight, as we were saying our prayers, Chloe prayed for Maverick. Carter tried to "shush" her - I think to protect me. I told him it was ok. She went on to pray that I would have a good day with Maverick - she used to pray that every night - and "for anybody has to have surgee." That's surgery for those who don't speak three-year-old. After we finished and I tucked them in, I was in the hall sorting laundry and she came out of the room with a sad look on her face and said, "Mama, I weally miss Maverick." I told her I did, too. Love you all - jc

Sunday, May 3, 2009

Tomorrow

Well, here we are. Tomorrow is the beginning of another week. Tomorrow morning Greg and I will be taking Maddie to see Dr. Ward - he was Mav's cardiologist at Children's in OKC. She has been complaining about her chest hurting and feeling funny for more than three years. I took her to the pediatrician three years ago to have it checked out and they did an EKG and all was well, so nothing further was done. After finding out about Mav but before he was born, I mentioned Maddie to Dr. Ward and he thought it sounded reasonable to have her checked out. So, that's what tomorrow is. She'll have a heart echo and will see him in the morning at his Mercy clinic. I'm concerned she might have an ASD. I hope I'm wrong. If she does, I suppose it is better to find out now than when she is 37... I'm praying that all goes well; however, nothing would surprise me at this point.

It was a pretty uneventful weekend. Carter went to a sleep-over last night, Maddie baby-sat, and Greg, Chloe and I just stayed around here. We slept in this morning. I've been catching-up on my sleep - finally. I went to the cemetery this afternoon. I can't tell you how difficult this has been. We both keep going over things - why did things go so wrong?

I'll let you all know how tomorrow goes. Love you all, jc

Friday, May 1, 2009

Finding My Place, Awareness, and Web Sites

I've been searching around on the computer tonight for a place that I can help. A place to join and help make a difference in the lives of babies and children affected by congenital heart defects. I haven't found my spot, yet, but I'm looking. Here is a statistic I thought you might find interesting.

In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

Here is a petition I signed tonight. I copied it from another site. It would be wonderful if you'd take the time to sign it, too. There are many interesting facts listed below.

Petition for Global Media Awareness of CHD

Please visit this site:http://www.gopetition.com/petitions/media-awareness-for-chd.html
And sign this petition:Media Awareness for CHD ( Congenital Heart Defects )

Background (Preamble):
*Congenital heart defects are America's #1 birth defect.
*Nearly one of every 85 babies is born with a CHD in the US.
*Congenital heart defects are the Number 1 cause of birth defect related deaths.
*This year almost 40,000 babies will be born with a congenital heart defect in the US.
*4,000 of them will not live to see their first birthday.
*91,000 life years are lost each year in this country due to congenital heart defects.
*The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year. *Congenital heart defects occur frequently and are often life threatening, yet research into them is grossly under funded. Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.
*Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
*More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.
*There are 35 different types of congenital heart defects. Little is known about the cause of most them. There is not yet a cure for any of them.
*In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.
*Statistics today show that due to misdiagnosis, lack of knowledge and awareness, & complications of surgery…about 51% of deaths caused by CHD are children under the age of 1 year.
*Early diagnosis is the key to survival!
*For nearly 40 years, newborn screening programs have provided an important public health service by identifying newborns with metabolic, hematologic and endocrine disorders as well as hearing loss. But did you know there is also a test that could identify a congenital heart defect immediately? This painless, non-invasive test is an echocardiogram and it could dramatically increase the survival rate for children born with CHD.

Due to these alarming facts, we the undersigned urge the Media to start helping in raising Awareness whether it will be my magazine and newspaper articles, books, info shows and commercials.

Thank you so much for taking the time to read this petition and care so much to sign it. It it truly being appreciated.WE NEED TO MAKE CHILDRENS' HEALTH ISSUES OUR PRIORITY !If you would like to learn more about CHD, please visit the following great pages :

http://www.chloeduyckmemorial.com/
http://www.hope4tinyhearts.com/
http://www.itsmyheart.org/
http://www.tchin.org/
http://www.carepages.com/
http://www.savinglittlehearts.org/
http://www.childrensheartfoundation.org/
http://www.babyheart.org/
http://www.congenitalheartdefects.com/
http://www.chdinfo.com/
http://www.chdfamilies.org/
http://www.societyforchda.com/
http://www.chdawareness.org/
http://www.kentuckianalefthearts.com/
http://www.childrensheartlink.org/
http://www.thechdquilt.homestead.com/
http://www.childrenheartinstitute.org/
http://www.heartsofhopemi.org/
http://www.littlehearts.org/
http://www.riheartgroup.com/
http://www.roccosheart.org/
http://www.media-ministry.org/chd/
http://www.angelinas-friends.com/
http://www.congenital-heart-defects.co.uk/

God bless you :)*Sandra Kay,- Founder of "Matters of the Heart", and "Angelina's -Warriors of CHD Awareness"Petition:Due to these alarming facts listed above, we the undersigned urge the Media to start helping in raising Awareness about CHD. We need to educate the public and demand mandatory heart screenings for all babies in utero!Media Awareness should come in all ways, whether it will be by radio, magazine and newspaper articles, books, movies, info shows and commercials. More ATTENTION and AWARENESS has to be given to CHD by the Media NOW !We need to step in and step up to the plate for the health and future of our little ones.

Love you all, jc