There’s this notion among moms: Whatever you do, don’t be “that mom.” It drives me bonkers. I’ve had a number of friends in the hospital recently with their kiddos. Some are medical parents, others are experiencing their first hospitalization. I often hear the phrase “that mom,” as in I don’t want to be “that mom.” …
One afternoon the week before Christmas, I moved through my typical routine. Put Eloise down for a nap. Velcro her Owlet on her foot. Attach her G tube extension. Pull and give the vitamins. Warm her feed. Pour it into the bag. Prime the line. Start the feed. Eloise is already asleep. Try not to …
This summer was the summer of getting back out there. We’ve spent much of the past couple of years in isolation as we’ve done our best to keep Eloise healthy. The warmer temperatures and outdoor activities allowed us to feel more comfortable with going out. We did things like going to local park district events, …
Second Half of Pregnancy Overview Parents are never prepared to hear the news that something is wrong with their baby. My nightmares and reality were identical after receiving Eloise’s diagnosis. Pregnancy is such a beautiful thing, and I felt like its beauty had been robbed from me. I’ve never experienced such overwhelming sadness. My child, …
The doctor and the resident shared the official diagnosis with us. I heard it, but it was like the doctor spoke another language. Holoprosencephaly is a long word that I asked him to repeat several times. The resident finally wrote it down on a piece of mini notepad paper, and I still have the piece …
July 2019 My nightmare and reality collided. I really did have a nightmare before learning Eloise’s diagnosis. It spooked me. I’ve wondered if deep down I knew something was off with my pregnancy. Obviously, hindsight is 20/20, but I think I knew. I couldn’t believe it when the pregnancy test showed a very faint second …
Three years. It’s been three years since learning Eloise’s diagnosis. I’ve learned that I shut down emotionally after something big. I go numb. I’m there, but I’m not there. Sometimes this feeling lasts days, sometimes it lasts for months. There are major events from Eloise’s life that just sort of exist in my brain. I …
Dear coffee kiosk employee, We’ve come a long way. You know my husband better, but we’ve met a few times. I’d like to think I made a memorable first impression. My husband usually gets the coffee, but I decided I would get it on our last day in the NICU — the day we took …
I grieved the loss of normal parenthood. This was what I told people in the early days. It served as a satisfactory answer to the question, “How are you?” If I answered well or good or okay, my friends and family didn’t believe me. Of course I wasn’t well or good or okay, but I …
The neonatologist focused on code status while I focused on getting to know Eloise. Sure, I had known her for nine months, seen her black and white ultrasound pictures, shared my body with her and felt each kick, rested one hand on my heart and one hand on my pregnant belly during the prenatal yoga …