"My Story…" Monday: Going to Chicago Instead of Home


C’s first eye surgery didn’t do the trick. I received a call a week later that her blood vessels were going haywire in there and Dr. Neely said that he’d like to go and do a “filler” laser surgery to zap all the ones he could see. Her first surgery had been a relatively quick and simple affair, so we agreed and he said he’d do the surgery the next morning, Wednesday, at 8 am. My husband juggled work yet again, and we showed up at the hospital at about 7:30 in the morning.

I had spoken to Dr. Neely several times on the phone by now, but this was the first time I met him. I talked to him briefly before the surgery and he said he’d come out to the waiting room to talk to us when he was through.

We waited in the family lounge with our son, keeping him occupied with little books and toys. One of the saddest things for me to watch during our hospital stay actually had nothing to do with the NICU babies… it involved the siblings. So many parents would drag their older children into the family lounge and expect them to just sit there quietly and wait without one single thing to play with or look at. Many a time, children far older than our one-year-old would wander over to check out his playthings simply because they were so bored and no one was even talking to them. When my husband would read to A, he would soon have a whole gathering of children around him, eager to hear to a story. He didn’t mind, of course, but it was sad that their parents didn’t think to do more for them. This is a hard time for the sibilngs too…

Anyway, I digress. C. had her second surgery and Dr. Neely felt it had been a success. There was only one problem… she had gone into respiratory distress. The anesthesia they gave her, Versed, seemed to just shut her down. She would forget to breathe on her own. They had to put her back on the C-PAP so that the pressure from the mask would “remind” her to draw regular breaths. Our hearts sank. You wait SO long for you child to move off of breathing equipment that to back-slide is simply devastating. They also had to put a heat-lamp over her to help her regulate her temperature. Even though the doctors and nurses assured us that she would be back to her usual self once the Versed wore off, it was terrible to watch. We kept thinking, “Isn’t there something they could give her? Some way to reverse the effects?”

But we just had to wait.

Not surprisingly, the medical staff was right and, by that evening, C. was happily breathing with only the nasal cannula again and she was regulating her own temperature without issue. She was back to her usual self and we were delighted, still anticipating a release date just around the corner. Our world was bright and we were optimistic. We started talking to the nurses about what tests she would need before she went home. It was getting exciting!

But the next Tuesday, my phone rang again. I was in the playroom of the Ronald McDonald house with my son. It was Dr. Neely. This is what he said,

“Mrs. S., I just checked C’s eyes. I’m very concerned about the progression of her ROP and I can see signs that the retina is starting to detach. If that continues without correction, she’ll lose her sight. I feel strongly that she needs to be seen by a retinal surgeon who specializes in premature infants. There are three of them in the country- one in California, one in Detroit, and one in Chicago. I’ve spoken to Dr. Shapiro in Chicago and he’ll be around so that’s where we want to transport her.”

Believe it or not, my phone lost service at that exact moment. I scrambled to another section of the building with my son in tow to call him back.

When?” I asked.

His answer suprised me:

Either tonight or tomorrow.

I got off the phone and called my husband. He had just started a new job. The day before. He told me he’d do his best to get a few days off. As I filled him in, another call came through on my phone. It was Dr. Lemons, the head of neonatology.

Dr. Lemons called to help me secure lodging for while we were in Chicago. He gave me a couple of options and volunteered to make the necessary phone calls. It may seem like a little thing, but I’m not sure most department heads take the time to do that for a family. I was so grateful for his help.

My husband called back to say he had managed to take the next three days off, despite only having been at the job for two days. That was a huge relief.

Next, we had to find care for our son. We couldn’t schlep him into the heart of Chicago with us. We didn’t know where we’d be staying yet and we didn’t know the layout or rules of the hospital there. My husband called one of his sisters and she agreed to watch A. We arranged to drop him off that night.

As we scrambled to pack his stuff, our stuff, and make arrangements, my phone rang yet again. It was a nurse from our current NICU. She told me this:

Mrs. S., I ‘m very sorry, but because- technically- C. is being discharged to go to Chicago, she is no longer considered a patient and, as a result, we can’t keep any of her things here for you. Including the breast milk.”

The breast milk. All 200+ bottles of it. Eight ounce bottles. What would we DO???

I sputtered, I stammered, I darn near begged her to help somehow. We had a tiny mini-fridge in our room. That’s it! We couldn’t fit more than six bottles in it. She said there was nothing she could do. Hubby called his sister. She thought they could store some of it. Maybe. I was desperate. I ran to the Ronald McDonald House main desk and told them our issue between tears. The volunteer at the desk said he’d see what they could do.

This all probably happened within twenty minutes and then my phone rang yet again. This time it was another, more seasoned nurse, who apologized up and down and said there was NO reason that we had to unload all that milk. They would store it. We could get it when she was released after our return to Indiana. Phew. I hung up, filled with relief but also frustrated that we had been so overwhelmed for no reason. As I put my phone down, the on-duty manager at the Ronald McDonald House knocked on my door. She offered me the use of their deep freezer, an industrial-sized freezer kept under lock and key. I was so touched by their willingness to try to help us at a moment’s notice. Fortunately, as it turns out, we didn’t have to transport all that milk.

We loaded the car and headed out to drop our son off at his aunt’s house. It was very late by the time we got back to the Ronald McDonald House for the night. Before turning in, we decided to visit our little girl and wish her sweet dreams. We headed to our room and tried to get some sleep. We knew we’d be rising bright and early to follow our daughter’s ambulance to Chicago.

We had no idea what was in store for us. But we knew it had to be done. More on that next week…

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