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, May 4, 2009

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


Kaylyn said...

I was really FORTUNATE to be able to use one of those Ronald McDonald rooms one night after my son's UNFORTUNATE stay in the hospital. He had had it after several nights of listening to me snore in the chair beside him. It was so great to be able to shower and sleep in actual pajamas. I was able to recover enough to help him through the rest of his stay. I'm not sure that they have more room on that floor for more rooms. But I'm so glad you are going to be able to help families at Children's. One thing you might look into is a private nursing room or bathing station for siblings with their parents. I saw many children rooming in if they only had one care giver for the family. Make people aware that they always need volunteers because they have to run everyone out and lock up the family room just to check people in and out the sleeping rooms. Just an idea... my thoughts and prayers are with you.

Dianna Black said...

I am so glad that Maddie's heart looked good...Praise God! Hugs to all of you!

Anonymous said...

Great pictures of your little guy and his eyes, they are beautiful. Thanks for your continued posts on your family, I really enjoy reading them. How precious your young daughter prays for you and Maverick too, she must understand more then anyone might know. I'm also so glad the hospital will be able to have new technology to help more little ones out. I don't think most will have an issue as to how you use your donations, but how generous and kind for you to ask for suggestions.

Bill and Mary said...

I am so thankful that Maddie's heart is fantastic! I think that whatever you choose to do with the money that's been raised will be the right thing to do. I love those pics of Mav. *sigh* I wish I could've smooched those cheeks. So kissable. I hope you are well.

Marci, RN said...

Hi Juli,

I am so glad to hear Maddie's heart is okay...when I read your post about her having problems my heart sank. I'm so happy she is alright. I miss you guys and also think about little mav all the time - every day. All the pictures you post are precioius. I still pray for you all.