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.

Sunday, January 11, 2009

This was a video of little Mav from 10-17. Greg had it on his phone and he showed it to me today. Guess what it made me do - one guess - yes, I started crying. I just can't believe all this little guy has been through. He really needs some good days, free from any complications or setbacks. He is doing about the same today. He is getting some of the fluid off. My grandma called me and said she started praying for him this morning, then my aunt Jeanne who is a Methodist minister called her and said she stopped the choir in the middle of her service today to have the congregation pray for Maverick. The 12:20 dialysis cycle yielded 110mls net of output. I remember only one other time it was more than that. That's something to be thankful for. I ended up going to the hospital around midnight last night. The resident called and told me they had given all the blood products and he had had a couple of little dips in his blood pressure - to the 60's systolic. She was concerned because he was oozing quite a bit of bloody secretions from his mouth. I went up there and it wasn't as bad as I had expected. When he gets really edematous he tends to have lots of serous secretions from his mouth and nose. I think someone got a little rough with the suctioning and it caused it to be a little bloody. His H/H were good today and so were his platelets. His white count came down and the results from the ET culture showed a moderate growth of pseudomonas, so at least we got the antibiotics started yesterday and it seems as if he's responding. They increased his feedings again today and he's tolerating them well. No diarrhea so far - I hope that's a sign that the heparin therapy is working.

So, remember last weekend when we thought he perforated his bowel? No one ever knew what the green coloration was from, or the dark flecks that were in the drainage. The flecks didn't look like stool. They were flat. I think I know what they were. Stay with the story for a minute and you'll understand. Last night I decided I was going to soak in the tub. We have a whirlpool tub, but we hardly ever use the jets. The kids take baths in there alot, but the jets just don't get used much. I turned them on last night and looked down and there were some dark flecks coming out of the jets. They looked exactly like the ones that came from his dialysis fluid at the time of the questionable perforation. The explanation? Mold. Maverick had a mold/fungal infection back after his first surgery that was on his mediastinal incision. He was on ampho B for quite a while and then switched to oral medications for it - and he continues on those. The infectious disease doctor in Dallas said the mold infections can be difficult to treat and can hide out and kind of encapsulate themselves then cause problems later. The day of the drainage, I had held and rocked him and I think an area of infection was disrupted, causing the color and flecks in his PD output. I told this to the resident last night and she added on a fungal culture to those from a couple of days ago. I asked them to switch him back to ampho-b, but they want to talk to the infectious disease doctor here first. I'll make sure we talk to him tomorrow. There must be an explanation for the color and flecks in the fluid and this is the one I think is most probable. That may also be why he continues to hold on to this fluid. Usually, little man will let go of the fluid after he starts recovering from an infection and I couldn't understand why he continued to get more edematous. The PD issue happened on Friday, on Monday he turned bright red like he does when he's septic. They drew regular cultures and only found light growth of pseudomonas in his et tube - not really anything they wanted to treat at that time. No fungal cultures were drawn. He's continued to stay puffy.

So, just continue to pray for my precious boy. We love him so much and want to get him home. He'll be four months old tomorrow. This is just unbelievable. More tomorrow - jc


Anonymous said...

Hi Juli. You know you aren't also a great Mama but you are one smart cookie. It is amazing how you do what you do and still keep up with it all.

Us Moms know when our babies need something...something we feel from the heart, I suppose.

I'm glad Mav has a beautiful, loving family to go home to. My prayer is that he will improve each and every day and hitch a ride home with the family soon!

You are doing a great job Juli.


Anonymous said...

You don't know me but I know you through my cousin Dovie. Your strength and patience is amazing! Your children are very lucky to have such a wonderful mother. I love reading your blogs and understanding the love you have for your son that only a mother can know. You and your family are in my thoughts and prayers.I know you all are so ready to get your sweet boy home. If you ever need someone extra to sit and talk with Maverick, I would be thrilled to do it. Terin Morris

Anonymous said...

What a precious video! Made me cry too. You are such wonderful parents... continually wading through the issues and looking for the answers and often being the ones to bring the solutions to the table! Maverick is a blessed little boy to have you and Greg! We continue to pray for Mav and believe that he will be completely healed and home soon. Love you guys-

Anonymous said...

My family prays for yours. I hope little Mav will get home with his siblings soon! We miss him here in Dallas.
Shawn RN