Elliott Arcile Reed

Elliott Arcile Reed
6 lbs 8 oz 19 3/4 inches

Tuesday, May 20, 2008

Decision's Made

May 19, 2008- 26 weeks

I talked to Ashley this morning about what Dr. Gray had intended with the website, she said the Dr. Gray just wanted us to have as many options as possible. He thought that we might meet the qualifications for the fetal surgery but it wasn't that he thought that St. Luke's and Children's Mercy in Kansas City couldn't handle our situation, which is what I had thought in the beginning. After he saw that the liver had possibly moved up and the LHR was down from the previous ultrasound, he just wanted us to know all of the possibilities and didn't want us to feel like he was keeping anything from us that we might want. Ashley said that she could have Dr. Gray call us and talk to us further about it, but I let her know that after much discussion, Brian and I decided that this was not a real option for us. First off, they can never guarantee that insurance will pay for the procedure, especially with how picky my insurance is ( I have a HMO through St. Joseph and they are very specific on where they will pay) and second there is not enough research and evidence that says that this will really benefit our little girl. Also, it can be difficult on the mom and any fetal surgeries can lead to preterm labor that cannot be stopped. We have just decided that we are going to stay in Kansas City and whatever happens, happens. We trust that the doctors in Kansas City will do all they can for us. We will just keep praying that we are doing what is best for not only our baby girl but for Brian and I.

4 comments:

Linda Reed Brown said...

Brian and Cassi,

I'm so thankful that I was able to talk to Shirley yesterday and know all this is going on.

Your blog takes my breath away, but also gave me the opportunity to add a prayer to posting I read.

I'm with you... Sue

Jen said...

Cassi & Brian,

I'm Sofia's Mom from the tour at Children's Mercy. Sorry I missed you guys when you came by, but I'm glad you got to come by and see Sofia. I love your blog and will continue to follow your story until you bring your sweet baby girl home. Always feel free to email me questions at jtmku@yahoo.com. We've researched CDH every day since October 29th (our ultrasound diagnosis date), so we know more than we ever wanted to about CDH. Breath of Hope is also an amazing group of parents and a great resource. Their link is also on our blog. Best wishes to you all - I read lots of good signs in your posts. Sofia was also a WILD kicker all the time - you definitely have a fighter in there!

Jen Miller
www.babymiller08.blogspot.com

P.S.
You made a good choice with Children's Mercy. I would rate the care here for CDH babies right up there with CHOP, Johns Hopkins, and Dr. Kays at Shands.

Vicki Jensen said...

Cassi & Brian,
I found your blog through Sophia Miller's. I'm a CDH mom to a little boy named Jack. Jack was diagnosed at 19 weeks gestation on April 5, 2007. I will keep your little girl in my thoughts and prayers. There is always hope and these babies have such a strong will to live.

There are also great support groups for you to talk with other families going through the CDH rollercoaster. I have some links on Jack's blog (see below)

Best of luck and you're in my thoughts & prayers.

Vicki Jensen
mom to Jack, LCDH & ECMO
www.babyjackjensen.blogspot.com
CarePage name = JackJensen

Kevin and Kathy Melcher said...

Cassi and Brian,

We are Kinley's parents, Kevin and Kathy. Thank you so much for the note you left on Kinley's blog. We have followed baby Sofia since the day we met her at Children's Mercy (on our tour back in March) and we plan to follow your baby girl as well. You are and will be in great hands at both St. Luke's and Children's Mercy. Please feel free to e-mail us at kmelcher13@hotmail.com. You will be in our thoughts and prayers.

Kevin & Kathy Melcher
www.kinleymelcher.blogspot.com