Our First Year Home With Our Preemie

our first year home with our preemie - she got guts.png

Our daughter was born at 26 weeks gestation weighing only 1lb 8oz. due to severe preeclampsia. As soon as she was born, I remember asking, “When is she coming home?” and the countdown began. Most babies come home around their due date, which in our case would be in 100 days. We had a family meeting, made sure I was trained all the enemas, suppositories, medications, and our graduation date had finally come, 114 days after she was born. We brought her home on New Year’s Eve 2015.

What I imagined vs. reality

I imagined that when we came home, things would just continue to get better. I imagined that the worst was behind us, we survived, and now we would continue as a “typical” family with just a few things to work through and people keeping an extra eye on her while she got stronger. I was incredibly happy to have her home. My husband and I would spend hours laying with her, holding her, talking about every face she made, every little thing she did. We were smitten. Each day was a gift, each outfit was ridiculously cute, everything she did was incredible, and we were pretty sure we had the best human on the planet living in our home. We did not know how it was possible, but it was true, and she was ours.

My dreams of what our home life would be like were quickly shattered and replaced with a reality of excessive projectile vomiting, blood in stool, enemas, food intolerance, sleepless nights, and a baby in pain. All the things babies do – eat, sleep, poop, repeat – she struggled with. She was sick. We quickly realized we were not out of the woods yet and had basically just entered them. Little did we know it would take years and possibly a lifetime to get through.

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