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, April 29, 2009

Sweet Baby Boy, Mama's not asleep yet

We found this sweet picture on Maddie's phone this evening. It was taken just minutes after he was born, before he was whisked away to the NICU.

Well, it was rainy most of the day here. Actually, rainy is quite the understatement. If we lived closer to the coast, I might call it a tropical storm. The wind was awful. I went to see the practitioner this morning and we had a good visit. She lost a son several years ago, so she had some good advice. She gave me some samples of sleeping medicine, but after searching the house and the vehicle I've come to the conclusion I must have left them at her office. I sat the bag down to write out my check. Maybe I left it there. I have retraced my steps after coming home haven't been able to find it. Sometimes, when I'm sidetracked and preoccupied I'll lay things down and forget where I put them or put them in strange places. I thought I might have done that, so I looked in the laundry hamper, pantry, trash, bathroom, refrigerator, and any other odd place I thought I could've placed it. Still no luck. I'll call the office tomorrow and see if they're there. So, for now, I'm awake and waiting for the Excedrin PM to kick in...

Chloe went to Mother's Day Out since I had the appointment, so I was also able to have lunch with some friends by myself. I love taking Chloe with me, but you know, sometimes it's fun just being with your girlfriends. She was a bit upset when she found out I went to Benedict Street and had coffee without her. She was asking me this evening if we were going tomorrow for lunch, "We go to Ben Stweet tomowow for lunch?" Probably not tomorrow, but maybe I'll make a pot of coffee in the morning. That should make her happy.

Greg, all the kids and I made a quick trip to OKC after school today to get Carter a baseball glove for his practice tomorrow. He is so excited. It will be fun watching him play. I'll try to put some pics of him on tomorrow. My phone isn't cooperating again, so I have to upload the pics to the computer to post them. The last time it stopped working and was giving me the "memory" issues, the guy at Subway fixed it for me. I was paying for my sandwich and the guy working asked how I liked my phone. That got my attention. I said, "Why, do you have one?" It was my lucky day - he did. I told him the issues I was having and he fixed it in about 15 seconds right there at the cash register. Maybe I need to go back tomorrow.

Just FYI, I'm still waiting to hear from the pediatric nurse practitioner program. I think I should hear something in the next few weeks. If I don't get in, expect a pity party to be thrown. You'll all be invited. I'm just kidding, but I really don't have a plan B right now if this doesn't work out, so I'll just wait and see what happens.

Before I stop for the night, I just wanted to say thanks to those of you who are still praying for us. We need all the prayers we can get. We have a few up-and-coming issues that I'll share in a later post. Love you all, jc


Anonymous said...

Each time I say a prayer to the Lord above, I ask him to watch over you and your beautiful family.

I hope you were able to locate your medicine.



Anonymous said...

First, I must apologize for the length of this. I received this e-mail today, and just had to send it to you. It is called "The Heart":

"Tomorrow morning", the surgeon began, "I'll open up your heart."
"You'll find Jesus there", the boy interrupted. The surgeon looked up, annoyed. "I'll cut open your heart", he continued, "to see how much damage has been done."
"But when you open up my heart, you'll find Jesus in there", said the boy. The surgeon looked to the parents, who sat quietly. "When I see how much damage has been done, I'll sew your heart and chest back up, and I'll plan what to do next."
"But you'll find Jesus in my heart. The Bible says He lives there. The hymns all say He lives there. You'll find him in my heart." The surgeon had had enough. "I'll tell you what I'll find. I'll find damaged muscle, low blood supply and weakened vessels. And I'll find out if I can make you well."
The boy answered, "you'll find Jesus there, too. He lives there."
The surgeon left. After surgery, he was recording his notes. "...damaged aorta, damaged pulmonary vein, widespread muscle degeneration. No hope for transplant, no hope for cure...Prognosis - death within one year." He stopped the recorder, but there was more to be said. "Why?", he asked. "Why did you do this? You put him here, you've put him in this pain. You've cursed him to an earthly death - WHY?" The Lord answered, "the boy is My Lamb and not meant for your flock. He is a part of My flock, and will forever be. His parents will join him here one day, and they will find peace." The surgeon's tears were hot, but his anger was hotter. "You created that boy, and you created his heart. He'll be dead in months. WHY!?" The Lord answered, "The boy, My Lamb, shall return to My flock, for he has done his duty: I did not put My lamb with your flock to lose him, but to find another lost lamb." The surgeon wept. He went to the boy's bed, with his parents by his side. "Did you cut open my heart?", the boy asked. "Yes" the surgeon answered. "What did you find?" asked the boy. "I found Jesus there", the surgeon said.

Maverick is such a gift - to us all! God Bless you, Juli.

Angela Jones said...

Juli -
It's so good to see you smiling in some of your posts. I love it that you climbed up and slid down the slide at McDonald's. I've also done that - and your right - it's certainly not made for tall people! I know you are still struggling, but please know that many of us are still here, following your story and praying for you daily.

Anonymous said...

Juli - glad to see you are still updating the blog almost every day...not only is it good therapy for you, but for all of us. It's great that you are spending time with your friends - you do have some pretty great friends. Take care and know that we love you guys! Love the photos of the kiddos! Teresa