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