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, October 29, 2008

You know, some days are a little more difficult than others. This has been one of those days. I can truthfully say I wouldn't wish this on my worst enemy. It's just been up and down for 6 weeks. He's off the epi and nor-epi and his blood pressure has been holding steady. His BUN was 73 today (it's a lab value which means he's dehydrated in his circulatory system), so he continues to be on only one diuretic (diamox for my medical friends). He received some blood today and all that volume made him puff up like a marshmallow. The third-spacing (extra fluid in his tissues instead of his circulatory system) has made it more difficult for him to breathe (most of the swelling is in his head and chest) and so they've gone up on his ventilator settings. A nephrologist came in for a consult yesterday and had some urine sent off for electrolytes. The results were back today and the nurse said they were fine and the nephro says the problems are pre-renal (meaning his kidneys are functioning ok). The infectious disease doc was in today as well and they have taken him off the ampho-b and placed him on oral itraconazole for the fungal infection they discovered when closing his chest. He'll be on that for quite awhile. He's still having some output from his chest tube. It's not as bad as before, but it's around 140mls over the past 36 hours. I'm praying this will stop on it's own soon. I sure don't want him to go through the pleurodesis again. I had hoped he would be off the vent before I go back to Shawnee on Friday, but there is no way that will happen. I also had hopes having him home by Thanksgiving, now I think Christmas will be a more realistic target. Thanks for all your continued thoughts and prayers. If you've read any good books lately, let me know what they are. Nothing serious - I like things that make me laugh. If you have any good Bible studies that would be beneficial in this situation, share those as well. Thanks - love you all - jc


Anonymous said...

Juli - I wish there was something I could say to make it all better, but the only thing I can think of is to remind you that your family are loved so very much and there are many, many people praying for all of you. Mav has already proven that he does things in his own time - he's a stubborn little guy and, when he is good and ready, he will get better...we just wish he would speed it up a little. Well, okay, a lot instead of a little. Hang in there, don't get discouraged - Maverick has been through so much it is just going to take time for him to finish healing to you soon. Teresa

Anonymous said...

Dear Juli,
Though I have been trying to keep updated on you guys, I just discovered your blog and read it from the beginning all the way to the most recent posting. I cannot begin to imagine how difficult this must be for you, Greg, and the kids. However, I am thankful that you are receiving good care and that Maverick is in capable hands, his physicians' and God's. It appears that underneath that adorable face your Maverick is a strong and determined little boy. Take comfort in his strength - he's working his way to you every day - it's just a process unfortunately. We are praying that he overcomes his obstacles and joins you at home very soon. In the meantime, if there is anything at all that we can do please don't hesitate for a moment. Love, Karlin and family

Anonymous said...

Hey Juli,
I was excited to see Greg, Carter, and Chloe yesterday at Carter's field trip. Greg showed me more pictures of your cute little guy. I'm still keeping up with yall and praying........Have fun while your home with the kids this week and let me know if you need me to start helping with the kids.
Love, Lu Anne