Tuesday, July 12, 2005

Ethan Part 10: Blind Hope

Quite a bit improved. Eye exam positive for retinal hemorrhages - to be repeated in one week.

-Ethan's medical record, 12 days old

Despite all the bad news we had received, we couldn't shed the hope that things were actually improving. Ethan reached a point where he seemed to be getting over the sickness part. He was off the oxygen and breathing on his own. He was eating well, gaining weight. Slowly but surely he was becoming more in tune with his surroundings. He would try to put his hands in his mouth when he was hungry. He would kick his legs and squirm around. He seemed like a new baby.

The nurses were quite taken with Ethan. He was a happy baby, and would hardly ever cry. The only time he cried was when he was hungry. They were still increasing his feeding amounts slowly to make sure his digestive system was mature. The tiny amounts of milk were never enough. He would suck the bottle dry and always seemed hungry for more.

Some of the nurses were adamant that we force nursing before every meal. He never really caught on with it, and I hated torturing him to wait for his meal. To me, the most important thing was that he was getting breast milk, even if it was in a bottle. I was exhausted from pumping every 2-3 hours, but I knew it was the best thing for him. Besides, he had struggled so much in every other respect, I felt he deserved a break.

One nurse in particular, Karen, really loved Ethan. We loved her as well. She always took a little more time, was a little gentler than the other nurses. She usually worked the overnight shifts, and it made us feel so much better to know she was there with him. Another nurse told us once that on a quiet night, Karen had sat and rocked Ethan for nearly the entire shift.

Since Ethan was off all tubes and maintaining his body temperature, he could finally be moved from the warmer to a regular bassinet like any other newborn. It was a major step. He looked so much less critical wrapped in his blankets, with a teddy bear in the corner of the bed.

The NICU staff put black and white drawings in all the babies' beds. Ethan had a dog on one side and a cat on the other. He always lay facing the dog side. We figured he had decided, like his father, he was a dog person.

One late afternoon, we were visiting with Ethan. Karen was working. She stood for a while, watching me rock Ethan. We asked her how he was doing, in her professional opinion. She said he seemed to be doing really well. He was well over 4 pounds now and was eating and sleeping well.

Then she asked, "He looks at you when you hold him, right?"

It seemed like an odd question. I looked down at him in my arms. He was sleeping.

"Yes. I mean, I think so. Why?"

"I was just wondering. I mean, I think when you hold him close enough, he really looks at you. The eye doctor was here earlier, and there were some concerns about his vision. It's very common with premies and small babies. The doctor will give you a call to discuss his findings."

After she walked away, it was all I could think about. Did he look at us? I didn't know. He always seemed to stare at the dog picture, didn't he? I couldn't say for sure. He had only started staying awake in the past week or so.

I glanced at the nursing notes at the foot of his bed. I saw a note that said "Eye exam for ROP today". I made a mental note and Googled when I got home. ROP - Retinopathy of Prematurity. From everything I read, this is a mainly curable disorder. Most of the time, it clears up on its own as time goes on. That was a relief. Even if Ethan had this, it would probably go away after a while.

The doctor called the next day. He was actually Jete's own eye doctor, which gave a level of familiarity. He explained that he had examined Ethan for ROP, but he did not appear to have it. What he did have were several hemorrhages in the backs of each eye. Since the eyes and brain are very close, these hemorrhages were most likely part of the overall bleeding he had experienced in the first few days of life.

I asked the doctor what this meant for Ethan. We got the usual answer. "I can't say for sure." All he would tell us was that he would monitor Ethan every few months to follow the progression of these hemorrhages. Only once they started to clear up could we see how much damage, if any, had been done.

We went back to visit Ethan the next day. He was gnawing on his hand and making gurgling noises. A nurse mentioned that 5 pounds was our goal for now. Assuming everything else stayed stable, once he reached this weight, he would be ready to go home.

Hearing this, we could see the light at the end of the tunnel. Sure, there were still questions. The clotting studies hadn't come back. The genetic workups were still pending. The eye exams were inconclusive. But none of that mattered to us. All we could focus on was the scale. Just a few more ounces, and we could take Ethan home.


1 comment:

mom of 2 under 4 said...

I know this happened years ago and Ethan is home now, but I found myself silently cheering for him as I read this post!