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, December 31, 2008

Happy New Year

Well, little Maverick seems like he is improving. His white count was down a little today and his CRP was about the same. He remains on a little dopamine, his edema has improved, and he was acting like he felt better. As you can see, he was quite awake today. I gave him a bath and changed his clothes. The RT and nurse moved the ventilator to the same side of the bed as his pumps so I will be able to hold him. I didn't today, because I wore him out after the bath and he was fast asleep. This little guy is just amazing - he just fights as hard as he can everyday. I hope things will start to get easier for him.

They began heparin today. It's a "blood thinner" and it's used to treat the protein-losing enteropathy. They are giving it sub-cutaneous (just under the skin), but since he's so edematous it seems like he just leaks it right back out. I'm going to try to find some info on the internet about giving it IV. If any of our Dallas doctors are reading this and have treated this condition with IV heparin, please let me know and give me the dosing you've used. The doctors here and the one they consulted with in Houston have never seen it in a baby. Does that surprise you? It doesn't surprise me at all - little Mav has to be unique in every way. I hope he responds well to the heparin therapy. Keep saying prayers.

I hope you all have a Happy New Year. I received this email from a friend and it made me cry. I thought you all might enjoy it. It seems appropriate for the new year.

Recently I overheard a mother & daughter in their last moments together at the airport. They had announced the departure. Standing near the security gate, they hugged & the mother said,'I love you, & I wish you enough.' The daughter replied, ' Mom, our life together has been more than enough. Your love is all I ever needed. I wish you enough, too, Mom.' They kissed & the daughter left. The mother walked over to the window where I was seated. Standing there I could see she wanted & needed to cry. I tried not to intrude on her privacy, but she welcomed me in by asking, 'Did you ever say good-bye to someone knowing it would be forever?' 'Yes, I have,' I replied. 'Forgive me for asking, but why is this a forever good-bye?'. 'I am old, & she lives so far away. I have challenges ahead & the reality is - the next trip back will be for my funeral,' she said. 'When you were saying good-bye, I heard you say, 'I wish you enough.' May I ask what that means?' She began to smile. 'That's a wish that has been handed down from other generations. My parents used to say it to everyone.' She paused a moment and looked up as if trying to remember it in detail, & she smiled even more. 'When we said, 'I wish you enough,' we were wanting the other person to have a life filled with just enough good things to sustain them.' Then turning toward me, she shared the following as if she were reciting it from memory.

I wish you enough sun to keep your attitude bright no matter how gray the day may appear. I wish you enough rain to appreciate the sun even more. I wish you enough happiness to keep your spirit alive & everlasting. I wish you enough pain so that even the smallest of joys in life may appear bigger. I wish you enough gain to satisfy your wanting. I wish you enough loss to appreciate all that you possess. I wish you enough hellos to get you through the final good-bye.

She then began to cry & walked away. They say it takes a minute to find a special person, an hour to appreciate them, a day to love them; but then an entire life to forget them.

To all my friends & loved ones, I WISH YOU ENOUGH...


Anonymous said...

Mav is looking good! I believe he is a fighter because he knows how much he is loved and wants to go home with your wonderful family. You know, maybe I'm crazy, but I think he looks like your Dad, Juli.
Will continue with prayer.

P.S. I think I remember my pose being just like Chloe's when I overindulged ONCE in my life :).

Take care & Happy New Year,


Anonymous said...

Happy New Year my sweet awesome Niece. I try to keep up with your blog and have read all the comments from everyone and you know me, being the glass is half full person I am. I think that this experience has been very hard on you but you have wonderful people all around you, and have definitely grown emotionally and spiritually stronger through all this. I remember when Terry had his heart surgery, staying at the hospital until I just was about to drop and had to have friends drive me home because I did not trust myself not to fall asleep at the wheel. I got home and fell into bed so guilty and worried about leaving Terry and coming home for a few hours of sleep but I fell asleep for about an hour and dreamed of Angels singing all around me and when I woke up I felt like I had slept a full 8 hours and I knew everything was going to be alright with Terry. Ever since then I know that I have these wonderful Angels looking out for me and all those I love. I am praying for Maverick to be rapidly improving and God to guide his doctors and nurses to help him get stronger and help in his healing. I will be up to see him again Saturday. He is very strong like his mom. You inspire others with your stories and faith. I am very honored and proud and blessed, and know everyone feels the same as I do, to have you in my life. You are wonderful. Give Mav a hug for me. Take care Juli, I love you, Cindy