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.

Thursday, October 30, 2008

Mav continues to swell. His BUN is still about the same. The nephrologist wanted to start him on a renal dose of dopamine, so they started it earlier today. Looking back over his labs, he's been this elevated before and it took anywhere from 2 to 10 days for it to come down. He's always been on diuretics, though, so I don't know how this will work out. He had a heart echo today. Dr. M said they just need to look at everything and see what else may be the cause of the continued swelling. The heart echo showed there is a narrowing of his pulmonary artery. They weren't able to tell if it was at the valve area, around the place where he re-attached the coronaries, or at the spot where the switch was performed. They've decided to perform a heart cath tomorrow at 2:00 to tell exactly where the obstruction is. The problem with the cath is that the dye they use can be toxic to the kidneys, but they need to do it. We're praying that the problem is at the area of the switch, because it is easiest to fix. If the interventional cardiologist is able, he can attempt to balloon the area. If he can't, Dr. M will have to go back in through his sternum and fix that area with a patch to make it larger (another open heart surgery). If it's at the area around where the coronaries were reattached, we're in for something much more complicated. For all my non-medical friends and family, it's kind of like plumbing. If you have a pipe that's too small to handle the flow in your bathroom or kitchen, the water/sewage/etc. will back up. Mav's pipe in his heart is too small in one spot, so the blood backs up and leaks into his tissues instead of going through his heart in a normal fashion. This may be the cause of the swelling. They're not sure, but they're looking at everything because something has to be causing this. They're just trying everything they can think of. It's been a very emotional day, and I know tomorrow will be even more difficult. I'm not going back home at least until Saturday, but that still depends on how Mav is doing. Greg is coming back tonight - we'll be here together tomorrow for the procedure. This is just so scary. Please pray that the problem will be evident and easy to fix and that he'll tolerate tomorrow without any problems. He's been through so much already, I just can't imagine going through another major surgery. Thanks to everyone that's helping with the kids. We appreciate it. Love you all - jc

5 comments:

Anonymous said...

Juli - my heart just aches for little Maverick. I'll say an extra special prayer for Maverick tonight...and I will pray that you and Greg remain strong and hold onto your faith. I know you don't want Maverick to have another surgery, but if that is what is causing the problems, it will be best. Maverick has a strong will and that is good. If there is ANYTHING I can do to help out with the kids, let me know...I feel so helpless here and just wish there was something I could do to ease your pain and frustration. You know that you have the best possible doctors and nurses taking care of Maverick and I am glad that they are going to check every avenue to see what the problem is....and then get it corrected so that you can bring Maverick home. Such a long tough road you have been on - let's hope tomorrow brings good news...you guys deserve some good news. Glad that Greg is coming back down tonight - know that you both are exhausted but need each other right now.....Teresa

Anonymous said...

Juli-
You and Mav are, once again, on my mind and truly in my heart tonight.I appreciate your putting everything in laymans terms, so I can fully understand what you both are walking through. You are so amazingly strong AND so is that little boy of yours.
Again, we humbly come before our heavenly Father lifting up your preciuos boy. May he give him grace and healing. And you, my sweet friend, may He bless you with undescribeable peace. I love you and am falling in love with your little guy through this blog. May you feel His love for you tomorrow.
-Kim

Bobby said...

Greg, Julie, Hope all goes well, our thoughts and prayers will be with all of you.
Bobby Edwards

Brenda said...

Juli & Greg,
I appreciate being able to keep up with you all on this blog! At exactly 1:58 today (Friday), I wanted to check in again - and saw that Maverick is having another procedure today at 2:00. Obviously, God was directing me check in so that I could say another prayer for you all today. May HIS hands be upon you all. Keeping little Maverick and your family in our thoughts and prayers.
Love you!
Brenda

Garrett Hadley said...

Dear Greg and Juli,
Hey, this is Garrett Hadley. My mom shares some brief news with me every time you guys call. I heard little Maverick is doing a little better and I couldn't be happier. Maverick will be in my thoughts and prayers always. I hope the best for you and Maverick. Stay strong!
-Garrett H.