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February 17, 2020 in Down syndrome, Family - No Comments

Three years ago today was THE scariest day of my life. I will never forget it. I was driving the hour drive to the NICU to see my sweet newborn. The entire drive I was feeling so hopeful because I felt like he would be coming home soon. When I got there though, I would soon find that was not the case.

I walked into the NICU to nurses and the doctors surrounding him. They were all hovering over and talking. I remember stopping, frozen in the door. They told me that they had just found out that Easton had NEC, and he was very sick. I had no idea what that was- so they had to educate me on it.

“Necrotizing enterocolitis, NEC, is the most common and serious intestinal disease among premature babies. It happens when tissue in the small or large intestine is injured or inflamed. This can lead to death of intestinal tissue and, in some cases, a hole (perforation) in the intestinal wall. In NEC, the intestine can no longer hold waste. So bacteria bacteria may pass into the bloodstream and cause a life-threatening infection. Waste may pass into the baby’s abdomen and make the baby very sick. The injured intestine, or sections of it, may die and need to be removed.”

They basically said that they were going to try to get rid of the infection but if they couldn’t, they would have to do emergency surgery to cut part of his intestine out completely.

So here I am, sobbing, not knowing what was going to happen. My poor baby now has this big tube down his throat sucking out the infection. He also had to stop feeds completely so an IV (which eventually turned into a PICC line) had to be placed again.

It was SO SCARY. The fear of the unknown is so real. Being a parent is so SO scary, and I got a crash course. I was mentally and physically exhausted. I just remember thinking, we got out of having open heart surgery just to have a different one!? WHY IS THIS HAPPENING?!

Isn’t that the question we always ask? Why? Why is this happening?! Why me? Why my child? It’s one of those things that is so difficult to understand. Ever since getting pregnant with Easton, my faith has grown- Mostly because it had to. I had to lean on God. I don’t think I would have made it through if I didn’t. I definitely still falter in my faith. I’m not as strong as I could or should be all the time. I am and always will be a work in progress. But I do know that God is always listening. I remember getting on my knees in that empty waiting room, sobbing, pleading with God to make my baby healthy again. I know He heard me. 

After about a week of that tube sucking out the infection, my boy was on the mend. He had made it through without surgery. The nurses and doctor was shocked. I could tell they all thought he would need surgery. This is just another example of my boy exceeding ALL expectations of him. He is amazing. He is a fighter. I have a feeling he will always exceed the expectations people have of him. He really is just a badass.

Thank you Lord for always listening to me- no matter how large or outlandish my prayers may be. Easton is a miracle. He is perfectly and wonderfully made for sure.

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” -Jeremiah 29:11


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Hey! I’m Krista!

Hey! I’m Krista!

I live in Chesterfield, VA with my husband Drew, and our two boys, Easton and Asher. Easton was born with Down syndrome. Easton's prenatal diagnosis was one that I struggled with greatly at first. Once he was born, I realized that everything doctors told me about all the things he wouldn't be able to do weren't true, and I became empowered. I felt the call and need to share our story with others in hopes that other women walking in our shoes could see that life with Down syndrome is not scary. It is filled with wonder, excitement, and joy. Follow along as I share all about motherhood, Down syndrome, our home, and lifestyle.

xoxo, Krista

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