Her prenatal course had been complicated with intermittent elevation of blood pressures although there were no findings strongly suggestive of pre-eclampsia.
-My Discharge Summary; Ethan 5 days old
My remaining days as an inpatient passed in mostly a blur. To add to the excitement, I sprained my ankle my second night there (for the third time). Jete had to push me around the rest of the days in a wheelchair since they were terrified I would fall again and sue the hospital.
We spent as much time as possible visiting with Ethan. Since the family members were still pouring in, it was mainly a one-parent-at-a-time event. And since I was laid up with my sprained ankle, it was mostly Jete and the family members. I didn't like having so much time to sit alone in my room and think.
In the first few days, Ethan seemed to be improving. He had been on anti-convulsants since his first suspected seizures, just in case. But the nurse mentioned that she hadn't seen any more seizures and they were weaning him off the medicines. The genetic testing had all come back negative. They were able to remove the tube from his throat since his breathing was much improved. He still needed a cannula on his nose, but it was definite progress.
Once the tube was out, he was able to start having small amounts of breast milk, at first by a syringe, then later from bottles. He tolerated feedings very well. They were pleased to see he had an excellent suck and swallow pattern. They gave him the tiniest pacifier I had ever seen. We still weren't able to hold him, and it really seemed to comfort him.
Ethan had his repeat head ultrasound, and they also did an EEG to look for any more seizure activity. Unfortunately, it was the weekend, so we were told it would take a few days to get the results read and explained to us.
The fifth day came faster than I had expected. Discharge day. My blood pressure had come under control after Ethan's birth. I was healing well. There was no reason for them to keep me. Dr. F came in to see me for my discharge. He took out the staples and patted me on the foot again. Everything looked great. I was all set to go home. Alone.
Around that time, the shock started to wear off. I felt like I never saw Jete or Ethan between all the visits. I was terrified about the results of all the tests. And I wondered about my own blood pressure. Dr. F had said I had underlying hypertension, and it wasn't related to the pregnancy. Did that mean it would shoot back to 200/100 like it had been before? Yes, it was under control now, but it obviously wasn't consistent.
Finally as Jete returned from a visit with an uncle, and the doctors in the NICU repeated that the tests weren't back, and another new nurse wanted to watch me pump again, I lost it. Between the hormone shift and all of the stress, I couldn't take it anymore. I started crying.
Jete finally got the hint, and sent all of the family away. He wheeled me down to the NICU and we spent the rest of the day with Ethan, just the two of us. The nurses saw my eyes and insisted we could stay as long as we wanted. And when I got home, we could call any hour of the day to check on him. He was in good hands. It would all be okay.
Later that night, we got my things together and headed home. The car ride was strange. It felt so wrong to be leaving Ethan behind. I stared out the window. Only 4 days before I had driven to my appointment past these same roads. Yet it didn't seem like the same world outside. Ethan was with me then. Now, he was away from me, separated forever. Everything was different.
That night, we got into bed. I noticed how quiet the house seemed compared to the bustle of the hospital. We lay there looking at each other. Talking about Ethan. I started to sob again. This time, I couldn't stop. Jete, normally very composed, cried too. Finally, exhausted, we fell asleep.
Jete went back to work. He planned to save his two paid weeks of paternity leave for the time when Ethan came home. I couldn't really drive with my sprained ankle, so I stayed home by myself all day. I called to check with the nurses, and they said he had a good night and was resting comfortably. As soon as Jete got home, we headed back to the hospital. This became a routine we repeated every day for weeks.
As soon as we arrived, the nurse told us that the doctors wanted to meet with us. They had the results of Ethan's tests. They would be over soon.
We visited with Ethan as usual, feeding him his tiny bottle and changing his diaper. Finally the doctors came over to see us. The neonatologist was accompanied by one of his residents. They pulled up chairs. They had papers in their hands. They asked us to sit down too.
The main doctor did all of the talking while the resident listened. He was very grave. He told us that they the head ultrasound did not look good. It showed multiple areas of damage in Ethan's brain. Of course, they used different words. Doctor words. Periventricular. Hematoma. Hemorrhages.
Basically, Ethan had massive brain bleeding. The newborn version of a stroke. This caused the seizures his first few days of life. The bleeding had not been there on his first ultrasound, or, was just starting and was so slight it would not have been noticed. It was widespread, not just limited to one area. They definitely wanted to do a CAT scan and possibly an MRI to get a better picture.
They didn't think it was going to get worse, but they would have to monitor him for quite a while to see if the bleeding was going to spread. If it spread further and started to cause pressure on the brain, they may have to put a shunt in to drain the blood. Unfortunately, the bleeding had also occurred in areas of the brain that could not be reached to drain. We would just have to wait and see. Their gut feeling was that the worst had already happened and now the healing would occur. They had seen colors on the ultrasound that told them bleeding had damaged parts of the brain but had since receded.
The doctors waited for us to speak. We didn't really know what to say. One of us asked what this meant for Ethan. Long term? The doctors brushed off our thoughts of the future. Right now, we needed to watch Ethan and make sure the hemorrhages would start to clear up. Then, we could see the full extent of the damage they had caused. The future was a long way off. There was no point in thinking about that now.
Of course, once the doctors left, the future was all we could think about. We looked at Ethan laying there so comfortably. We would have never guessed what was going on inside his skull if they hadn't told us. What would become of him? Would he live through this? Would we?
NEXT: PART 9 - EARLY SCARS
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