Our Roller Coaster Ride in NICU

So with summer approaching, I can’t help but recall the thrill of going to an amusement park and riding the roller coasters. The speed, the twist, the turns, the feeling of laughter and terror at the same time. In one word:  Awesome! Over the past few years however the term “roller coaster” took on a whole new meaning. See, “roller coaster” in NICU life, means something entirely different than most people know.

A little back story to get you to where my ride on the roller coaster started. At 26 weeks into my wife’s pregnancy, things went from being perfectly normal, to something else all together in a matter of less than 24 hours. We thought my wife had the flu or just wasn’t feeling well. She went to see her doctor and they noticed her blood pressure was high. They thought she had pre-eclampsia a condition where mothers blood pressure gets really high and can be dangerous and difficult to get back down to a normal level. After the visit with the doctor they sent her to the Beaumont Hospital just to get some further tests done, and so they could see what was going on.

So about 1:00 we get to the hospital, and they monitor her. The blood pressure wasn’t improving, and it was beginning to have potentially harmful effects to both my wife and our baby. Next thing we know, we were admitted, they kept trying to lower the pressure, she was on IV medications, but it wasn’t working. About 5:00 PM they said we needed to get ready for an emergency C Section. At about 5:15 my wife and I discussed names. At this point we hadn’t even discussed names and thought we had a few months to narrow some down. We quickly agreed on a boy name, and a girl name because we didn’t know what we were having.

5:30 PM, we have a new baby girl…Natalie. Born at 26 weeks, 1 lb 4 oz, and very very fragile.

About an hour later, I was standing beside my new baby girl in her isolette (what some would call the “incubator” that keeps her warm). I couldn’t touch her yet, my wife couldn’t even see her yet because she was still under heavy medication in her room. This is when I first met with the Neonatologists and the nurses who gave me a brief rundown of what was going on, and what to expect.

In a state of shock it was tough to comprehend everything going on, but I heard things that were scary and knew that there were many many unknowns. Still for the time, she was “ok”.

One of the nurses talked to me and said that we were in for a roller coaster ride. Seeing the puzzled look on my face, she explained further. Many babies in the NICU have good days and not so good days. There will be ups and downs. From that day on, the term roller coaster took on a whole new meaning for our family.

The roller coaster ride for us wasn’t a 55 second ride, it wasn’t a long weekend, it was a 5 month NICU stay. Unless you have been in the NICU, the ride is tough to explain. We could go from being extremely proud that she gained a half of an ounce over night, to having to leave the room while they perform life saving respiritory support within five minutes.  Yeah, that’s the roller coaster. For every positive climb she made, there was often times a scary drop to follow.

Five months later and many twists, turns, climbs and drops, we were finally able to take our baby girl home. So yeah, I left out a TON of nitty gritty details, but that’s not the point.

I’ve personally talked to hundreds of NICU parents over the past few years and each of them had their own roller coaster ride. For some it was brief and relatively easy, some it was terrifying. To this day almost five years later, I can look at photos I took and remember exactly what I was feeling that day. I can remember the feeling of sadness when she was really sick. I can remember the tears of joy four months after she was born, when she finally was breathing on her own, without the support of a ventilator, the day we first heard her cry!!

If you have had a baby in the NICU I’m sure you can relate to the roller coaster with a story of your own. If you are a friend or family of someone who has a little one in the NICU, I hope this has helped you understand that the parents are going through one of the most intense rides of their lives and sometimes they may not share everything going on. If you are on that roller coaster ride now, please know that it does get better. And know you are not alone on the ride.

– Jason Pyciak, volunteer

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