Thursday, February 3, 2011

When Time Stands Still.

A week has passed and at many moments I feel like time really is standing still. Yesterday was an especially hard day. Thinking back to the appointment when we received our official diagnosis. I thought back to how hard I was shaking when I walked through the doors of the Maternal Fetal Medicine office. How my heart was racing and I struggled to hold back tears as we were walked back to the ultrasound room. How my heart sank when Dr. Darragh told us what he saw on the echo. It brought many tears yesterday. Many indeed. I found a lovely poem that explains just how this feels. It is entitled "When Time Stands Still" by Debbie Hilton-Kamm. Here is just a snippet of what it says (you can read the full poem here):

It starts with news impossible to hear
It conjures up your every fear
It's when they say your child is ill
That's when time just stands still
In that moment, that suspended time
A thousand thoughts run through your mind
Will he ever laugh and play?
Will I see his wedding day?

It all started with news that I felt was impossible. This couldn't be happening. Not to me. Then the fear came strong and hard. Every ounce of fear I knew within came bubbling to the surface and the tears and shakes began. These thoughts did go through my mind. Will I see my son grow up? Will I see his first birthday? Will I see his beautiful, bright smile? Will I see him laugh and play? Will I see him graduate high school, go to college, get married? In that moment I wanted the world to stop spinning. I wanted the fear and the sadness to stop. I wanted all of these thoughts that were running through my head to stop.

Today, I am encouraged. There are still tears and there will be. That is only to be expected. I sat with my hands on Lukas for quite some time today and just closed my eyes. I envisioned his perfect little nose, his tiny little hands and feet, his little pink lips. I just prayed and thought about my boy growing day by day within. And it helped. It helped to allow some of that fear soften and melt away.

I started the process of looking for support groups both locally and online. I researched truncus a little more to get a better understanding of just what we are dealing with and letting my head wrap around it. What I know is that I want to be as educated as possible on his heart defect. I want and need to be prepared for what to expect in the months to come, how to adjust to being a mommy with a heart baby, and how to ensure he is receiving the best care possible. I found some great stuff that is helping me to formulate some new questions for our upcoming fetal echo. I found lots of great facts too, like truncus occurs in less than 1 out of every 10,000 live births and accounts for 1 percent of all congenital heart defects. I also found another great image courtesy of the Lucile Packard Children's Hospital at Stanford which shows how oxygenated and deoxygenated blood mix within the heart of a baby with truncus.

Image courtesy of the Lucile Packard Children's Hospital at Stanford

We had a big ice storm the other evening and we are hunkered indoors to stay off the icy roads.  I have been talking to the boys about Lukas and his special heart during our time indoors. Riley points to my belly and says "Lukas in there" and all that runs through my mind is be still my heart.

Hayden taking a peek at the ice outside - sorry its a little "noisy" I had to set my ISO pretty high due to the setting sun
Ice covered bushes outside

In the meantime, the boys and I are spending lots of time snuggling on the couch, reading books, playing with trains and cars, and laughing. I am even crocheting some blankets for Lukas. The boys get very intrigued by what I am doing and Riley likes to stroke them and say "this for Lukas Mommy." I keep them in the drawers of my desk while my fingers are recuperating (to keep the cats from running off with my yarn) and I love that Riley knows where those blankets are and who they are for. He often walks up to my desk and pulls those drawers open to take a peek. And he just smiles.

Don't you love the blues, greens, and yellows? I LOVE it!

We are slowly getting prepared and hopefully we will be starting on the nursery soon. I think that will help with everything. It will keep my mind busy and keep me focusing on spending time with my little boy in that room. Watching my big boys play and cuddle with my little boy in there. I can't wait. And as always, keep our boy in your thoughts and prayers!

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  1. Thinking of you, the boys & little Lukas daily. love the blues, greens & yellows. I have been making hats out the wazoo- everything I use on my newborns I make myself. I will have to whip Lukas up a few hats. :)

  2. Aww thanks. I would love that =)

  3. You and little Lukas are in my prayers and I will post it on my website too!

  4. Christie, I am so sorry to learn that little Lukas heart isn't healthy. I am praying for his safe birth and that the doctors will be able to operate successfully. I came here after reading McKMama's tweet, and remember how miraculous Stellan's outcome was? There is always hope.

    Many people are thinking of you, I hope that thought helps a little bit.

    All my best,
    Dagmar's momsense

  5. Christie,

    I came to your site via MckMama...please know I'm praying for Lukas' healing and for peace and comfort for your family. Miracles do happen. And Riley is such a wonderful place for children in need of excellent care. I am passing along your story and requesting prayers from all I know. You have a beautiful family. :)

    Many prayers and much love,

  6. Hello. I just wanted to tell you that I know exactly how you feel. I was in your shoes not too long ago. My son was diagnosed at 22 weeks gestation with HLHS..there was no left side to his heart. It rocked our world upside down!

    Owen just turned 3! After 2 open heart surgeries and two more to go this year...our hearts have been changed and for the better! It's going to be a difficult journey, but such a blessed one.

    If you want to blog is We have a pretty big facebook group called heart mamas. There are some other moms of kiddos with trundle, HLHS and every other defect on between! You are about to be a "heart mom". We love each each other..and have a tie that binds. Next week is chd awareness week.

    On my sidebar you will find many links to other heart babies, but mostly single ventricles.

    My prayers are with you and i will add Lukas to my heart babies list. Owen has open heart surgery on thursday of next week. Yikes!

  7. I am sending lots of thoughts and prayers your way. As a heart mommy myself its not easy hearing those words. My beautiful little princess was my first, and to find out that my one chance at a baby and she was going to have a special heart, was HARD!! If you need to talk I am here. You can email me or you can find me on facebook(if you do that).
    Heart hugs

  8. Thank you all so much for your beautiful, kind comments and prayers! We appreciate them so much! I will keep you all in my prayers as well =)

  9. Hi, Christie. While my Hailey isn't a heart baby, she has severe medical problems. She was in the hospital for Christmas, and that was her tenth episode of Encephalopathy.

    I don't know the exact struggles that you will be facing with a heart baby, but I SO understand the uncertainty that's gripping you. Wondering what the future will hold for your baby and your family. I guess only time will tell.

    I know it's easier said than done, and I can't even follow my own advice at times, but try to remain positive. I've learned that dwelling on the negative or letting the fear grip you will only take from today, and you can't change tomorrow.

    You and Lukas are in my prayers!

  10. I just found your blog, I am 22 weeks along in my pregnancy and our little Ryleigh Ann was just diagnosed with Truncus Arteriosus last week, I have had many of the same thoughts run through my head only my tears never seem to stop – I wasn’t able to hold them in, I broke down in the specialists office and then again in the fetal cardiologist. I hate that her first moment of life will be consumed with such a horrifying ordeal. Your blog gave me hope that we just may see her smile, hear her laugh, enjoy her life, and all that it will add to ours.

    As we make our way through the emotions and prepare for her first open hearts surgery, your blog gave me a little hope that I am not alone and there is much hope that we can hold on to.


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