Thursday, September 30, 2010

One Year Ago Today

Every time I have started this post I have spent most of the time crying.  One year ago today I handed my beautiful daughter over to the surgeons to 'fix' her heart.  Just remembering the day of her Norwood scares me and brings up emotions so raw that it is hard to describe.  It is a day that will forever be etched in my mind and one that I remember all the time with mixed emotions.  I remember the feeling of being in PICU while the doctors and nurses were describing everything.  I wasn't really thinking about what was going to happen...I was holding my daughter in my arms and crying like I have never cried before.  I was praying to God like I had never prayed before.  I know people were talking, but I heard nothing...I was lost in a world that belonged to myself, my husband, and Hope.  I told Hope to fight and be strong.  I prayed to God that he would hold Hope in his arms and help her fight through the surgery.  Anyone that has had to hand their little ones over to surgeons knows the emotions I was going through.  They know the feelings...the raw emotion.  If you have not had to do this...I doubt I have described it and all the feelings that goes with it.  It is unreal and something I know I will have to do again...and I hate to think about that at all.
This is what Hope looked like one year ago today.  It is a picture that will forever remain in my head and I hate thinking that any other parent would have to see their sweet little baby so puffy and hooked up to so many machines. 
Hope was in surgery for over 8 hours and the day went by so slowly.  Our family spent the day in the Ronald McDonald room at the Clinic with us.  The boys came up and played and it took my mind off everything for about a second.  The hourly phone calls were heartwrenching.  They told me what was happening with my little girl and as much as I knew it was necessary...I was so scared and worried.  I waited for the calls and then when the phone rang, my stomach would turn and I would feel sick.  The whole day was like that...a few minutes of relief after the call, 50 minutes of worrying, and 5 minutes of being on the phone and hearing what was happening.

It was such a relief when we were able to see her after surgery.  I don't think anything could have really prepared us or our family for what she would look like.  I have seen men cry that I never thought would cry in public.  These are manly men...the ones brought up in an age where men DO NOT cry in public.  Those images will stay with me forever. 

The above pictures are the ones I cherish...Hope growing up.  She is AMAZING!  You would never know by looking at her that she has gone through 2 open heart surgeries and 2 heart caths.  She is and will always be my HERO!


  1. She is amazing, all our CHD babies are amazing. your blog post made me cry, we are facing Little Mans 3rd open heart surgery in the coming weeks and quite frankly I am terrified of doing it all again.

  2. Congratulations on your Norwood-versary (not so much a word). She is looking better and better. I love those chunky arms that she's getting. I know the shock of walking in post-op and seeing our babies there's not amount of preparation for that. But I hope today is mostly filled with happy thoughts for you as you celebrate with Hope.

  3. I'm so glad Hope has done so well over the last year. And to think of the awful diagnosis they gave her after she was born before you proactively went for a second opinion. I remember that awful gut wrentching feeling of the updates too. Give Hope a big hug from Aly and I today and tell her how proud we are of her- look at you Hope- one year later! :)
    Heart hugs,

  4. I am so glad that she done so well during this year despite all that she has been through. She is my little hero too!!!
    I remember those pictures so vividly too. I prayed and prayed and I still do every single day. Big ((HUGS)) to you because too have been through so much this year.

  5. Our "one year ago" day is coming up soon. This brings back so many memories. I can't imagine having to endure the difficulties of HLHS. Hope is so precious and an amazing survivor!

  6. Those are definitely some heart wrenching memories, but what a blessing that Hope is doing so well one year out from surgery!

  7. A year ago Hope was given a new chance at life, those are bittersweet memories we carry with us! So glad she is doing so well. She is an amazing beautiful fighter!!
    She must get her strength from her mommy!

  8. You weren't kidding when you told me the patch is yucky. Could you actually see her heart? I am so glad that Logan won't need that.
    Thank god you went to the Clinic. I think you should forward this email to Akron.
    She really beat all the odds, so proud of her and your family.
    Thanks again for answering so many questions for me and being there for me. I really appreciate it.

  9. What a difference one year makes!! It's amazing! I can't believe you used the word "puffy" - I remember thinking she's not puffy - she's like a little sausage about to explode! You're right there is nothing that can prepare anyone for seeing someone they love right after surgery like that - I did not know you could see her little heart beating under a thin piece of tape.
    I am so glad to be a part of her life - and yours - I love you!
    You are also my hero - you've stayed strong and loving through out so much this year! I am thankful and blessed to have been able to watch the Lord work in both of your lives!! I love you