"My Story…" Monday: Bye, Bye, Riley…


I’ve written many times about the amazing children’s hospital we were at. Riley Children’s Hospital, in Indianapolis, is a great hospital overall, but their NICU, especially, is outstanding. In my first couple years of living in Indiana when I was drenched in despair and self-pity much of the time, wondering why I had ever thought it would be a good idea to move to this state, I often took comfort in the idea that perhaps it was just meant to be. There are very few other places in the country that would have been able to handle my extremely premature daughter as well.

We were used to a phenomenal level of care. Added to that, we had been “stationed” at Riley for three months at this point. The thought of being transferred to a different hospital with a different staff, though it was clearly a step in the right direction, was scary. There was no choice to be made, though. Our fates had been decided and, as we drove home from Chicago, we knew we would be meeting our daughter’s ambulance at a new hospital, albeit one right next door to Riley. We were checking into I.U. Medical Center, the very hospital where I had given birth to her three months before…

When we first arrived at the Special Care Nursery at I.U. to see our daughter, I was struck by the size of the room she was in. As I mentioned last week, our daughter tested postive for MRSA which meant she needed to be in an isolation room. Her room at I.U. was easily three times the size of the room she had been in at Riley. It also had windows. In short, it was a very bright, roomy space. Of course, at this point, C. still had bandages over both eyes so it was unlikely she got to enjoy any of the early morning sunbeams but, still, it was nice to have a view!

As the first couple days went by, we had the opportunity to meet several new nurses. They all seemed very friendly. Our nurses, at least, seemed to really enjoy dressing our little girl in pretty, frilly preemie outfits and it was obvious that the Special Care Nursery, rather than serving as a place to heal the critically ill, acted as a place to help the slightly fragile get out the door. At Riley, C. had already tried, and done well with, a bottle or two each day. Within three days at I.U., she was no longer tube-fed at all and was strictly on bottles on an “ad lib on demand schedule”– basically, she was allowed to eat as much as she wanted as frequently as she wanted, much like most newborns. We were amazingly encouraged by this and so hopeful that when our little girl was released, tube feeding would be completely behind us.

The most frustrating difference that I noticed (aside from simply not seeing our beloved Riley nurses who we had come to know so well) was that I no longer felt quite so “in the loop”, medically speaking. There was no team of neonatologists making rounds here. For the most part, if I had questions, I had to call and wait for a return call from a nurse practitioner. Don’t get me wrong– she was very knowledgeable. But it wasn’t the same as when I’d be sitting by C’s bedside and the doctor on rotation would pull me out to stand with the team of residents and fellows to listen to her status and the plan for moving forward. Perhaps it should have been comforting for me to be able to focus on ruffly socks and feeding her a bottle… the way “normal” parents do with their babies. But, after three months of being entrenched in medical details, I felt lost and unaware. It was unnerving for me.

On about our fifth day there, we arrived to visit C. only to find she had been moved out among the other babies. This shocked us! What in the world??? She had MRSA! She was supposed to be isolated! Well, remember how I told you how very common MRSA is? It’s true. And it turned out that so many babies had been exposed to the bacteria (not from our daughter, mind you), that they essentially turned one half of the Special Care Nursery into a “MRSA ward”. In a way, it was strange being out among the other families again, but it was nice to be out in the open too. To not have to head into some little alcove.

We never got to know any other families in the Special Care Nursery. Most of those babies are in there for two weeks or less. It’s not the same as Riley where so many of us practically “set up camp” and prepare for the long haul. It was a survival tactic that we Riley parents employed, talking to others who were also enduring long journeys. The months became easier to bear when you weren’t isolated and alone in the quest for a healthy, strong baby. It wasn’t like that at I.U. Some other parents would smile occasionally but, for the most part, no one had any interest in getting to know you. Being a social creature, this was tough on me too. I don’t think it really bothered my husband.

Just over a week after arriving at the Special Care Nursery, I received surprising news during a routine call with the nurse practitioner. They wanted to send C. home. Within four days. We had a lot of tests to schedule and preparations to undergo before this could happen…

I’ll tell you about all those next week.

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