Wednesday, August 03, 2005

Ethan Part 11: One Step Closer

OT was consulted for help with the contractures noted in the...extremities. ... The question remains whether or not the positioning could be related to cerebral palsy. *

- From Ethan's transfer summary to CCN, 16 days old

Since Ethan was doing so much better, there was no medical reason to keep him in the NICU. He wasn't on any machines and was eating well. It was time for him to transfer to the Continuing Care Nursery (CCN). This was the ward for sick - but not critical - babies. We were happy to shed the label.

It was hard to believe it had been barely two weeks since he was born. What was more amazing was the transformation he had gone through. He had come from being near death to a thriving baby.

His transfer to CCN wasn't exactly what we had imagined. Everything was different in this unit. Yesterday Ethan had to share his nurse with only one or two other babies; today, he shared with almost ten. The standards of care were quite different. The unit went by a "he who cries loudest gets picked up first" rule. Some babies required more comforting. Others were still on medications. Ethan demanded very little. Since he didn't fuss much, they pretty much left him alone unless he had to eat or be changed. More than ever, we made sure to visit as often as we could.

An occupational therapist set up time to visit us to review the contractures they had noted in his hands. They were going to make him splints to help straighten them out to the proper position. But when she came to see us, she said they had improved dramatically since birth. There was no need to splint them. This was very good news. We took this as a sign that maybe things would be okay. Maybe he could recover from all of his injuries. If his hands could get better, why couldn't his brain?

Now that he was out of danger, Ethan could have his hearing screening. Despite all the other issues, we weren't concerned about his hearing. He always responded to our voices, settling down when he heard us talking to him. We thought this test would be a piece of cake.

The audiologist came in and explained the process. The machine gave a simple Pass or Fail result. Although, instead of calling it "Fail" they called it "Refer", meaning they were referring you for more testing. I didn't see the distinction, until Ethan's results came back "Refer".

The audiologist came back the next day with a more sophisticated machine. This test would be able to give results at multiple frequencies. Ethan again "referred" at the same decibel level as before. But this time, he passed at an intermediate level. As we suspected, he was not deaf. Everyone was very pleased - including the audiologist. She told us he most likely had a mild hearing loss. It could possibly improve as he got bigger. A worst case scenario would involve getting him hearing aids someday.

We didn't care about any of that. We only cared that he could hear. He may not be able to see us, but at least he wouldn't be completely isolated in his own world. We made sure to talk to him and sing to him even more than before.

Finally, Ethan's results had come back from the clotting studies they had done. He passed every test. He did not have a clotting disorder. This was a huge relief, although I assumed it meant that I must have a clotting disorder that had caused all the problems. We still hadn't gotten my results back yet to confirm that fear.

Now that he was in the CCN, his pediatricians assumed Ethan's care. We no longer met with the neonatologists as we had in the NICU. We never seemed to be in the NICU as the same time as his doctors, but we'd get daily phone calls updating us on his progress.

We asked the doctors about the magic "5 pound mark" that we had heard mentioned before. But the doctors wouldn't commit to any particular weight as the sign he could go home. They kept saying that he'd have to be at least 5 pounds, and we'd have to make sure everything else was stable too.

Looking back, I think the doctors were scared. Ethan's rapid recovery seemed a little too good to be true after all he had been through. There were still questions around about what had caused all the problems, and they seemed to be expecting a relapse.

In any case, we kept feeding him, fattening him up, watching him get a little healthier each day than the day before. We knew he'd be coming home soon. It just couldn't come soon enough.


* Even though they were questioning CP within week of Ethan's birth, no one said those words to us until six months later. I didn't learn they knew this early until I ordered his medical records a year later.

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