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, February 19, 2009

Poor little guy... His right leg was bruised and painful today. He would cry whenever we messed with it, so he got his pain medicine whenever he could today. I held him and rocked him on my chest for a couple of hours today. That's one of the best parts of my day. He had the vascular study today, and it showed both his femoral veins are blocked - probably from the previous procedures and lines. That's why they weren't able to do the cath yesterday. I'm going to find out tomorrow if they need to change his dose of heparin to help alleviate the clots. He had lots of little changes today. His gas was good this morning so he got an extra wean of two breaths per minute. He should be at a rate of 15 by tomorrow morning. His white count was up again. So far the cultures are negative and he's not acting like he's sick. His steroid type and dose was changed this week, so that may be the reason for the increasing white count. I asked Dr. Gormley how much it could go up if it was steroid-related. He said a hematologist (blood doctor) told him it could go up by any amount at any time. Hmmm... Hopefully that's what's happening with Maverick. I found a case study on the internet last night about the viagra for treatment of PLE and the dosing for it was quite a bit higher than Mav's dose, so we increased his dose today. His feedings have also been changed. Yesterday when he went to the cath lab they had to pull out the carefully placed feeding tube :(. Today he needed feedings started again, so we're trying a different approach since the continuous feedings weren't working so well. He's now getting bolus feedings every 2 1/2 hours with just a regular feeding tube to his stomach, and so far he's tolerating them without vomiting - and he's had no residuals (nothing left in his tummy prior to the next feeding)! The nephrologist asked the lab to change the way they were measuring the protein in Mav's dialysis output (they were reporting in grams per deciliter instead of milligrams). When they did, that showed exactly how much protein he is losing in his dialysis output and it is a very large amount. So, we're changing his dialysis today. He had been on hourly dialysis and now he'll be on hourly for four hours and off dialysis for four hours. This should decrease the amount of protein he's losing in half. Maybe that will help a little. The protein-losing in his dialysis is probably related to the PLE as well. It seems like the loss through the stool is under control and his stools now are actually pretty normal. They've always had a watery component to them, but they don't anymore. There is not a date set yet for the next heart cath. I'm thinking sometime next week. I would like to give the higher dose of viagra time to work to see if it helps any before we subject him to the cath. Maybe that's the reason it didn't happen yesterday...

Still hopeful - jc

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