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.

Friday, January 9, 2009

Thursday - cath day

Well, Mav's day didn't start out so well (Thursday). He had a bad blood gas this morning and his peak pressures on his ventilator were in the 40's and up to 50. He was even more edematous and his eyes were bruised from the swelling. We decided to let him have the heart cath today since the swelling wasn't getting better. Dr. Ward did the cath around 4:00 in the afternoon. Prior to the cath they had tried transducing a pic line in his right arm and the pressures were in the mid-upper 20's. He had another pic placed in his left arm a few days ago and those were transducing in the mid - upper teens. On the heart cath, his central venous pressure was 18 - which is high - which is not good. They didn't find any structural abnormalities, but his right ventricle was very stiff. Maverick has had that problem since his first surgery. There is really nothing they can do about that. So, with all that said, we just need to be able to get the fluid off him and support his little body the best we can. Hopefully he'll get some fluid off and the heparin therapy will start working and he'll be able to do alright with the high central venous pressure. I also wonder if it's maybe a little higher than normal due to all the swelling he has right now. His weight was 4.6 kg Wednesday. I know this news isn't the best, but I keep thinking of everything he's been through and how he's pulled out of it. He's done well in the past, and that was probably with the same CVP. When I left tonight, he had 110mls of fluid off with one hour of a dialysis cycle - he's never had that much out with one cycle before. I think he's starting to let go of some of the fluid. I think he'll look better tomorrow. His peak pressures were in the 20's and 30's when I left. Why the sudden turn? I think it's all the prayers. Some of my friends from church came and prayed for him today and my sweet friend, Kelly, did the same. I know alot of my other friends and family were doing the same from their homes. Thank you all very much - love ya - jc

4 comments:

Christy said...

Julie, we don't know each other, but I know of Maverick through Amber Crawley. My girls and I have just spent some time in prayer pleading on Mavericks behalf and yours for his healing to begin immediately and that he will get to come home very soon. After we finished I opened my verse for the day and this is what it read:

"For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! "
2 Corinthians 4:17, NLT

I know your troubles are not small to you at all, but they are nothing that God can't handle. We never know what His plan is, but I pray that the plan is to let Maverick come home. I just wanted to send this and hope that it encourages you. I can never pretend that I can even imagine what you are going through. I will continue to pray for your precious baby boy. Christy Kinnett & Family

Anonymous said...

Hi Juli,

Thank you for the update. I hope you don't mind, but the other day, sent your blog to a number of my friends and asked for prayers. Can't have too many of those, huh? Glad to hear he is losing some of that fluid. I have a saying posted by my desk that says, "When you are down to nothing, God is up to something."

Take care.

Sherry

Anonymous said...

still here and still praying
love, lu anne

fishermomma said...

I just love looking at the picture of Mav where you describe his eyes, and the ones where you get to hold him. I pray he's doing better today. You're right to remember what he's already come through, that's what I kept thinking of yesterday too. You are a strong and courageous mom. I hope you really know that he never would've made it this far without you, every moment is worth it. Love you, Jamy