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.

Tuesday, March 10, 2009

This week has been pretty rough so far. I had a friend over today who said it's probably just settling in - I think she's right. We were just numb for awhile. Now we're hurting. It's hard for us to think about everything he had to go through to end up not making it.

I went to lunch with some friends today. I almost didn't, but was glad I did. My mind is never really "off" him, but sometimes it helps to be with other people. Most of the time, though, I just want to be with Greg and the kids.

We've received some of the sweetest cards and correspondence. Thank you all so much. Some of Mav's nurses have written to us. I feel like next to us, they knew him best. We so appreciate your sweet words about our boy. I have to share one card we received in a potted hydrangea at the funeral home. It made me cry and still does.

"Clark family, These blue flowers reminded me of Mav's beautiful blue eyes. I hope you will plant these where they will always remind you of your sweet boy. Much love, Lindsay, RN"

We will.

This brings me to another thing I've learned from Mav. Nurses make the biggest difference. This is in no way meant to deny the importance of excellent care from physicians, but nurses are the ones who Mav had in his room around the clock. They're the ones we were with most of the time as well. Having a good, caring nurse would make even the worst days seem better. Having a nurse with less hope than us could make a good day terrible. Seeing our favorites care for Mav made my heart happy. I knew he would get the attention he needed and deserved if we weren't there. They each had their special things they would do for him. Some would make sure he had a bath and a clean mohawk. Some made the neatest beds or cleanest rooms. Some arranged all the wires and tubes. Some made sure he was lotioned up. Some liked to talk to him and just stay in the room with him. Others brought him stuffed animals, wound up his mobile umpteen times a shift, and arranged the room so it would be easy for me to hold him. One helped us keep our perspective. Another (who didn't even have him a lot) called him "lovebug". She may have called all her patients that, but it made me happy to hear it. Most were amazing at nursing us as a family as well, and I know I wasn't the easiest person to deal with... and I'm sure that's an understatement. Thanks to all of you.

Being a nurse, I learned all about "family-centered care." I hope I practiced it. I know I will more so when I'm working again.

Love you all - jc
Enough rambling for tonight.

1 comment:

Anonymous said...

Great post this evening...I still can't imagine the pain and hurt your family is going through, but I certainly enjoy reading your blog. My husband and I actually went to see a maternal fetal specialist on Monday and I thought about your little boy and all the machines that have been used on me to keep an eye on the little one in my tummy. Since finding your blog, I have tended to my son more, played trains more and tried to overall just listen to him. I don't say this to bring tears to you, I say it to let you know I'm learning from your journey how precious again family is and I want to make sure I'm more connected to mine. You're doing a great job keeping your other children involved and adding them to Maverick's blog! I hope to one day become a nurse myself, many made a difference in my time in the hospital last year during braing surgery and I feel it's what I was meant to do. Continue to write when you feel able to, you're touching lives through Maverick and yourself....I hope it's therapeutic for you!