“Dear Heart Moms,
It’s okay to cry…and cry a lot! And at all the places.
My favorite was in my car when I knew no one else was watching. Or at a stoplight. Or just driving down the highway.
Because nothing, I repeat, nothing is going to prepare you for what you are about to see or when your baby is about to have open heart surgery.
I don’t care how many photos of other babies you see, when you see your baby lying there limp and attached to so many cords that you can barely see their body, it’s terrifying.
And that’s all you will see. All the cords, all the wires, and all the machines. Your precious baby will be unrecognizable for the first time.
I will never forget the first night after she was born and I had her alone in the hospital after hearing, ‘Your daughter appears to have Down Syndrome.’
The first thing that popped up on Google was her life expectancy and at this moment I was in a world of tears. An absolute mess.
It said 25 to 30 years old. I didn’t even yet know she was also born with a heart defect.
Never did I think that one day I was going to have to bury my baby. The thought of how that would rip her other siblings apart was unbearable.
Then, I remember thinking, ‘Our next 25 to 30 years will have to be the best!’
Days later I found out she was born with a heart defect and because of heart surgery and medical advances, people living with Down Syndrome were living longer. I became instantly hopeful.
Fast forward to her heart surgery…
In the days leading up to her surgery, it was as if I was in slow motion. Everyone was moving and I was watching it all. I was a passenger to my own life.
Knowing that her heart would be completely stopped was something I couldn’t wrap my mind around. The cooling and warming of your organs were hard to process.
Our doctor was confident and told me he had not lost a baby doing this surgery since 1982. But I saw mommies losing their babies right and left around me.
Her surgery from start to stop was 8 hours long. Her doctor was incredible, and I remember thinking that the fact he chose the smallest of hearts to repair is amazing. The whole team of doctors were incredible. Then we got the call….
She was all done and she did beautifully and her repair was successful. I was relieved, but still I didn’t expect to see her the way I did.
Walking into that room and seeing her hooked up to a million machines, and her body swollen with a yellowish tint from all the cleaning is a sight I will never forget.
You will want to hold her! You will want to help your baby and you will feel completely helpless because you are unable to.
Did you know your baby can cry without actually making noises?! They do… and it’s heartbreaking. They will be swollen, bruised, and bandaged.
Slowly over the next few days, she started losing wire after wire, machine after machine. And on the 3rd day after she lost the chest tube, I was able to hold her! It was like holding her again for the first time all over again. Only this time she was ‘fixed.’
Her breathing was now perfect. No more fast quick short breaths and her eyes lit up. No more tired eyes and blue hands because of lack of oxygen.
She did AMAZING and after a short week we were released to come home with our new and improved baby. And she is shocking the crap out of the doctors with how incredible she was doing, and still is!
I am here to tell you that your baby will live a longer life than expected because of this surgery… because of the doctors and most importantly because of faith.
And you WILL laugh again! You will still cry but instead of tears of sadness, it will be tears of overwhelming joy. Tears of thankfulness.
So take it minute by minute. Don’t compare your journey and your baby to others because that’s hard also! Your journey was designed for you, so lean on and lift up others. These battles weren’t meant for us to go through alone.”
This story was submitted to Love What Matters by Amber Rojas. You can follow her journey on Instagram and her Podcast. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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