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.

Monday, February 16, 2009

Busy Day

It's been a busy day for Maverick. Today he went to radiology to have the feeding tube placed even further. It didn't work. They haven't been able to get it past the duodenum, so the radiologist left some slack of the line in his stomach and they're going to start him on some medication to increase the movement of his intestines and see if it will migrate further on its own. His vent rate was decreased to 24. His gas this afternoon was good. Maybe he'll wean some more tomorrow. His white count was at 19 today. That's the first time it's been less than 20 in quite awhile - yea! It just needs to keep going down. He should have a PICC line placed tomorrow. One of the IVs in his scalp is still working well. Greg bought some dressings for his bottom today and we were actually able to get them to stick. They will stay in place as long as possible and hopefully allow his body to heal.

As for the PLE... we got the alpha 1 antitrypsan level back and it wasn't elevated. The doctors think it might not be in Mav because he probably doesn't have much circulating in his blood to lose in his stool. Basically, he still has PLE. His albumin level is still low, he's still losing his lymphocytes and his immunoglobulins. It's a pretty serious condition. They have been trying the treatment with meds and heparin, and the diarrhea has gotten better, but his protein levels aren't nearly what they should be. Everyone kept saying that this usually happen after the Fontan surgery. I started researching fontan surgeries. It seems that fenestrated fontans don't usually have the issue with PLE - I kept thinking, "what does Mav's heart have in common with a fontan heart, and how could a fenestration help him?" I spoke to the cardiologist yesterday about making a fenestration in Mav's heart to help with his high central venous pressures and hopefully alleviate the PLE. He said, "Hmmm, it just might work." He went to look at Mav's last heart cath and called me back and said he thought it might work. Ok, this gets pretty medical (sorry to my non-medical friends, just skip to the end of the paragraph). He said the right side of Mav's heart looks like a fontan heart (with the higher pressures) and said the atrial septum is actually bowing to the left, which shows him making a hole in the atrial septum would create a right to left shunt, which would decrease the load on the right ventricle and reduce his central venous pressure. So, Mav will probably have another heart cath this week where they will go in through his groin and create a hole in the wall between the top chambers of his heart. Please pray this goes well and will alleviate the PLE (protein-losing enteropathy). If this works, it would be HUGE in Mav's recovery. It would allow his body to heal and grow. It would allow his immune system to function better and would probably decrease his edema greatly. Seriously, this would be the greatest thing to happen for Mav in a long time. Keep little man in your prayers - and pray for no more infections! Thank you all so much - love ya - jc


Anonymous said...

Mav is so very lucky to have such a smart and dedicated mommy! We are thinking of him here in Dallas and are hoping for the best!
Vanessa Blutrich (Dallas heart mom)

Anonymous said...

juli, the pics of maverick are so cute! i'm sorry he's having to continue to battle. he is such a strong little guy. stronger than most adults i would venture. you and yours are in our thoughts and prayers. we are all hoping for a full recovery and homecoming as soon as possible. please let me know if there is anything at all either of us can do for you, greg or the kids. sincerely, karlin and family

Johnna Ervin said...

We're continuing to pray for your little Maverick. We're also praying for you Julie as well as Greg and the other children.