The tale of an unnecessary NICU stay

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I left you with a few tantalizing tidbits in The Post-Birth Experience, and now I will fill in the blanks.

The morning after Mr. S was born, he had an echo-cardiogram. Kyle’s cardiologist suggested that everyone in the family get tested for Kyle’s heart defect (bicuspid aortic valve) because it runs in families. I got the baby’s echo at birth mainly to save myself a trip to the clinic, but also because newborns tend to sit through echo-cardiograms more easily than older babies.

It was a pleasant morning. After the echo, my dad came to meet Mr. S and brought me a lovely bouquet of flowers. Then the hospital photographer came to take the hospital shots, something I was looking forward to because my other children’s newborn shots were taken by nurses, not actual photographers. After the photographer left the room, I decided there was no way I’d be paying the listed amount for the photographs. So I left Mr. S in the pose she used and took some of my own pictures. Here’s one:

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In the early afternoon, Daddy brought Kyle in to meet his baby brother. It was so very sweet. Later, I felt glad Kyle was able to see Mr. S in the calm quiet of the postpartum room rather than among the beeps and wires in the NICU.

My mom planned to visit after work, and just before she was set to arrive with my dad, the nurse came in and informed me that they were going to take Mr. S up to the NICU. It was all very confusing for me. The first thing I said was, “Right now? Can’t it wait?” I remember standing there with my parents when the cardiologist came in with a diagram and explained to me about Coarctation of the Aorta. I said, “So he doesn’t have a bicuspid aortic valve like my other son?” Nope.

From Cincinnati Children’s website, this is the medical explanation for why Mr. S had to be hooked up to monitors after the results of his echo:
In approximately 25 percent of cases of isolated coarctation, the narrowing is severe enough to cause symptoms in the first days of life when the ductus arteriosus closes. When the ductus arteriosus closes, the left ventricle must suddenly pump against much higher resistance and this can lead to heart failure and shock. Because these newborns are well until the ductus arteriosus closes, symptoms appear rapidly and are often severe. 

The doctors had found a narrowing that was significant enough to warrant the NICU, but it wasn’t causing Mr. S any symptoms. He was breathing fine, his heart sounded fine, and he was perfectly pink. However, he had to be monitored until the ductus arteriosus closed a few days after his birth. This was because if the coarctation turned out to be a problem, as stated above, he would rapidly deteriorate.

Once they took him upstairs and got him hooked up to all the monitors, I worked on getting myself discharged. I didn’t really think it through–I should have kept my room for meals and showers for the next 24 hours I was entitled to it. However, I sort of thought they would provide me with a “breastfeeding tray” of food like they do at the children’s hospital, I didn’t realize there wasn’t a bathroom when they said it was a private NICU room, and I wanted to be by my baby’s side so I could breastfeed and comfort him when he woke up (which turned out to be often).

My parents helped me move up to the NICU room, and I had to send the flowers back home with my dad. They left to eat dinner and pick up E so she could see her new brother. She had a cough, and had to take extra precautions now that we were in the NICU.

By about 24 hours after giving birth, I was getting pretty exhausted, so one of the nurses helped me make up my “bed.” It was a couch that folded flat. So compounding my discomfort and soreness, I had to sleep on 4 inches of foam. The second most fun part about the NICU is how sensitive the wires are, so every 30 minutes or so one of them would loosen and trigger an alarm. I figured out how to reposition them rather quickly.

Breastfeeding was another interesting task, especially with me being a somewhat modest person and whilst sitting in a room with only a large glass door. I figured out how to sit behind the curtain in the back of the room, but it was close quarters between the curtain and the couch. One thing that intrigued me was the staff’s comments about breastfeeding. I supposed with NICU parents having to head back home for their families, there is a lot of bottle feeding in the NICU. I got the feeling it was less common for a parent to camp out in baby’s room to feed on demand.

The next morning, I had to figure out how to go eat my breakfast. I waited until Mr. S was asleep and found my way to the cafeteria. I think it could actually be close to a mile away, or at least it felt that way walking to it 36 hours after childbirth. I would have taken my time, but I also felt very anxious leaving Mr. S. I still didn’t understand the inner workings of the NICU at that point.

Over those few days I came to appreciate the cafeteria. I realized the food you get from food service at the hospital is CRAP compared to the delicious, healthier food they serve in the cafeteria. I may have had to pay for it, but it was so much more satisfying. For example–the pancakes. I ordered one on my first morning and it was tiny and reminded me of a microwaved Eggo pancake. Except that it was cold. When I ordered a blueberry pancake in the cafeteria, it was made-to-order and as big as the plate. It was a meal in itself.

It makes you wonder, doesn’t it, why in a place where people are supposed to be healing and recovering, the food is so completely unhealthy? I remember when my Granny was in her last weeks and having a lot of trouble staying nourished. The foods I observed her eating were Ensure (also on the postpartum menu–check out the first few ingredients:¬†Water, Corn Maltodextrin, Sugar, Milk Protein Concentrate, Soy Oil, Soy Protein Isolate, Sucromalt…what is that??) and ice cream sandwiches. Why don’t they offer superfoods instead to these people who need them most? But I digress.

I hung out by myself during the afternoon, and then Daddy came back with his parents and Bud. I left to eat a quick dinner while they all got to know Mr. S.

The next day was key: they would be doing a repeat echo-cardiogram. They had given the ductus arteriosus enough time to close, and Mr. S had been doing great so far. It was almost evening by the time I heard from the cardiologist and got the all-clear. Mr. S had not experienced any problems, and in a little more than 48 hours his aortic arch had grown significantly.

I was beginning to get excited that maybe he’d be discharged that evening. However, upon his recheck of weight, Mr. S had lost too much. Most likely from the stress we both had experienced, he lost more than 10% of his birth weight and would have to stay another night. My milk was just coming in, so I knew he would turn a corner. He gained just enough in the next day to go home.

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In retrospect, what made this NICU stay unnecessary? Had I not tried to save myself a trip to the clinic by getting my newborn an echo-cardiogram at birth, we would have taken him home two days after birth and been none the wiser. By Mr. S’s follow-up echo at one month, there was no narrowing in the aortic arch. He was a perfectly healthy newborn from the moment of his first breath, and never showed a single symptom of Coarctation of the Aorta. Because the doctors had the information though, they had to monitor Mr. S until the time that COA normally becomes a problem.

I am glad we had peace of mind through the process, and as a worrier it was comforting to know the oxygen saturation of my newborn at all times. I certainly feel for those parents with extended NICU stays, especially the ones who are not in a private room. It is tough on new mothers. The system would serve families better if mothers were provided the same care and comfort as their newborns in the NICU.

As for me, I’m still waiting for that “perfect” postpartum experience.

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About Katie

Katie Bee is the author of for Elysium blog: a site about family, Down syndrome, home, art, and writing.

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