10 Secrets of Being the Parent of a Preemie

1. You acquire basic nursing skills. During my baby’s NICU stay I learned to give injections, insert a nasogastric tube, read monitors, perform infant CPR and various other skills, many of which were required to take my baby home.

2. The smell of hospital food makes your stomach turn. We’ve spent more than 100 days of my daughter Charlie’s first year in the hospital. I could happily live my life without ever tasting hospital food again and still don’t know why they serve it every year at the NICU reunion.

3. Sizes lose all relevance. Charlie fit into newborn clothes for three months after she came home from the NICU. At age 2, she wears sizes 12- to 18-months.

4. Simple questions become complicated. The questions people generally ask new parents can’t easily be answered. It starts in the NICU with, “When is she coming home?” Then it continues with questions like, “How old is your baby?” or “Are you breast feeding?”

5. You learn loads of medical terminology. You know what a physiatrist is and you understand what words and abbreviations like apnea, bradycardia, IVH, tachycardia, desaturation, bilirubin, CPAP, hematocrit, NEC, PVL and ROP mean.

6. Baby showers are complex situations. Baby showers are emotionally loaded. If you’re brave enough to attend one, you wonder how to join conversations about birth and pregnancy in a socially appropriate way. All the while, you’re trying to get over that feeling of being the elephant in the room and feeling like the physical proof of one of the many ways a pregnancy can go wrong.

7. People constantly remind you how lucky you are. I realize we were lucky. We got to bring our baby home. However, there are days I don’t feel lucky. On some days, I feel like we lost. On those days, I resent people who feel the need to tell me how lucky we are. I wonder why people don’t have the urge to tell every mother of a newborn how lucky she is to have had a full-term pregnancy.

8. Things are put into perspective. For me, facing the possibility of losing my child was looking my greatest fear head on. In comparison, everything else is small potatoes.

9. You almost become an expert on insurance policies. As much as insurance companies try to misguide you, you’ve managed to learn about automatic denials, appeals, DME coverage and much more. You learn not to accept the first “No” as the answer. You fight like hell.

10. No accomplishment is ever small. I remember the date Charlie first rolled over (January 27, 2013) and the date she took her first steps (January 7, 2014). She worked incredibly hard to reach these developmental milestones, and nobody was sure she would reach them. Every little thing — from tolerating food in her mouth to learning to wave — is a cause for celebration.

This post originally appeared on Cheering on Charlie.