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 2, 2009

I took a little video today, but for some reason it won't send to the blog. I'll try again tomorrow. Mav's white count was way up today (39) and his CRP was too (202). They pulled the infected line yesterday and I think that's why. It happened the last time they pulled a line. He was pretty puffy this morning, but Dr. Turman changed his dialysis concentration to 2.5% and he seemed a little less swollen this evening. So far his blood pressure is tolerating the higher concentration. The feeding tube is finally down far enough (transpyloric), so hopefully his NG output (the output from his stomach through the other tube in his nose) will finally decrease. He actually looked better this evening when I left than he has the past few days. He had been sleeping alot, but today he was awake quite a bit. He got a special air mattress this afternoon and I held him while they were placing it on his bed. I'm planning on holding him tomorrow, too. Greg and I were talking about it last night and he said most of the touching he gets is painful (changing his diaper, position changes, etc), and he just needs to be loved on. He did well with it today, so I'm going to try to do it everyday. If one of my other kids were sick, they would want to be held.

I don't know if I posted this or not, but his triglycerides had been high - over 400 last week. The GI doctor recommended starting him on omega-3 fatty acids (fish oil). That started on Thursday and today his triglycerides were down to 199. For those of you with high cholesterol, it might be worth a try.

Speaking of trying things, the bag balm for his bottom doesn't seem to be helping much. His bottom just looks so painful. He starts crying when you undo his diaper. We're back to using oxygen and some of the hospital stuff.

Well, that's all for now. Hopefully I'll have better news tomorrow. Thanks for your thoughts and prayers. Love you all - jc


Anonymous said...

My name is Karen & I work @ Deaconess - we took care of your niece Addison & that's how I found out about Mav & your website. We check it frequently & pray for your family. Any way ... I'm sure you have probably had all kinds of suggestions about his bottom but 2 of my kids had PRO & CHO intolerance & had severe lactic acid burns on their butts & we found liquid antacid worked. Plain - w/o flavoring (we used generic) & just coat the area well like a lotion.

Anonymous said...

We continue to pray for Mav and your whole family.
I don't know if this will help, but it may be worth a try. My godfather is a pharmacists in the MWC/Del City area. He has a big compounding lab. He has been making a "Butt paste" for years that is awesome. I have recommended it to several people who have told me they've tried everything and nothing helps and this did. The name of his pharmacy is Lassiter Drug on SE 29th. Give Spence or me a call if you have any questions.
Thank you so much for keeping us all posted on this blog! I check it several times a day.
Every afternoon when our custodian comes in my room, she always asks about Mav. There are tons of people out there praying for all of you.
Allison Kidney

Anonymous said...

Juli - I always read the blog comments...they are always so heartfelt and I know how much they lift your spirits. I don't think we will ever know how many lives you have touched with Maverick's blog and how many people are praying for him. Plus I bet they give their kids or grandkids an extra-long hug and realize just what a miracle it is for kids to be born healthy.

When Addison was born, Heather told the nurses about Maverick and I am so glad they are continuing to check your blog. Nurses truly have a special place in the heaven!

Maverick is a beautiful, special little baby and God truly has something wonderful in store for this little guy.

To the folks reading this blog, I've been Juli's stepmom since she was just a little girl. I think you can tell just how wonderful Juli and Greg their kids are adorable. God knew exactly what he was doing when he blessed them with Maverick.

Love you - Teresa