2.26.2009

The Story

OK, so I had mentioned earlier that there is a specific reason that I am starting this blog now. Her name is Avery Mae Keirsey. She is still hanging out in my belly but will soon make a much anticipated arrival into this world. Unfortunately, when she arrives, she will be very sick. During our 20 week ultrasound, we were told that she may have some issues. One month later we were on our way to meet with a high-risk OB in Little Rock. Fears confirmed, she was diagnosed with Congenital Diaphragmatic Hernia (CDH). Basically, she has a hole in her diaphragm which is allowing for parts of her digestive system to creep up into her chest cavity. The condition is very serious and she will require surgery quickly after birth. Now on top of that, we found out last week that she also has a heart defect. This one is called Double Outlet Right Ventricle. Not really sure how to even explain that in English.

So over the past couple of months we have been dealing with craziness. I am not even sure that I can explain all the emotions that have come and gone. What I can tell you is that we have been showered with love and support from close friends and family as well as strangers. I am so touched by all of you who have offered to help in any possible way. I am so grateful for the prayers, thoughts, karma, chi, and good vibes!

So I will tell you that the way that I feel about all of this fluctuates in ways that I cannot explain. Tonight I feel OK. Tomorrow, who knows. I found out today that we will be meeting with both general pediatric and thoracic surgeons on Monday as well as the OB whom we have already seen. I am terrified. I have no idea what they are going to say and I am not sure that I am prepared for what they are going to tell us.

I guess that is it for now. My goal is to keep you all updated as best I can. Again, I so appreciate the outpouring of support and I am hopeful that we will handle whatever comes our way.

6 comments:

  1. You know we are here for you!

    ReplyDelete
  2. Hi There,

    We came across your blog and I wanted to introduce you to our organization. We are a huge support group for families dealing with CDH. We also offer a lot of other services as well. Most importantly, we provide free information on CDH and can help you learn what to expect and offer you support from a lot of new friends who have been in your shoes.

    CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
    http://www.cdhsupport.org
    http://www.cdhresearch.org

    Whatever we can do to help, please let me know!

    Dawn

    CHERUBS President
    & CDH Mom to Shane

    ReplyDelete
  3. If you ever have questions or need to talk, CHERUBS is a wonderful group of families that have been where you are at and will be there for you during Avery's journey. Saying a prayer for your sweet little girl that she will fight and be strong! CDH babies do amazing things and always have faith and hope for your little girl. She needs her family to be strong and fight with her.

    Tracy Meats - mom to Ian, born with a LCDH on 4/3/04 and WY and CO State Rep. for CHERUBS

    ReplyDelete
  4. hi carissa, i'm candice west's sister-in-law. i think i've met you a couple times at bday parties and such. read about your "story" on can's blog a couple of days ago and then happened upon your blog through hers. just want you to know that i am praying for you and baby avery!

    ReplyDelete
  5. Carissa-

    I found your blog thru CHERUBS. I, too, am 33 weeks pregnant with Kaden (LCDH). He is due April 17th. Ironically, I am also from Arkansas--although I have lived in the Bay Area CA for quite some time. All my family is still there (Cherokee Village to be exact!). I know this is a hard journey, but know you and Shane are not alone in it. Educate yourself as much as possible and ask alot of questions. CHERUBS is a great support system too. They have all been where we are and are a wealth of strength and support. Do not hesistate to reach out to me if you ever want to chat.

    Visit my blog:
    http://kadenalexkuehl.blogspot.com/

    or email me:

    KKuehl@ffcmtg.com

    Kristi

    ReplyDelete
  6. Hi Carissa
    I came across your blog when I searched diaphraghamatic hernia + DORV - my daughter was found to have the same problems 5 days ago. Your positive attitude inspires me. God bless your family. Be happy!
    Cheers
    Ricky (from Hong Kong)

    ReplyDelete