That day after Belalu was born and had been sent to the other hospital began a week and a half of surreality (I think I'm making that word up) that I wouldn't have been able to anticipate. I was alone in the hospital room in town, while J and our newborn daughter were in another state. He was essentially all alone, too, as he spent the day helplessly watching as they subjected her to test after test. She continued to have blue episodes, and we were very concerned about how the lack of oxygen would affect her cognitive development. Honestly, I don't now remember all the different tests she underwent, but I know they gave her an MRI and a CT scan. It was a Friday, and by the end of the day they had some additional testing to do, but since it was now the weekend, we would not get any further answers until Monday. So, we had to accept that we would continue to be confused and scared and not have any answers to allay our fears for at least two more days. We felt helpless.
My hospital discharged me as soon as possible, and by Saturday afternoon I was with my baby again. I tried to spend as much time in the NICU as possible, but the nurses would constantly urge me back to my own room as I fell asleep with her in my arms. J was back home with Juju and Essie, so it was a quiet, lonely room, though I was so grateful for the Children's Miracle Network that allowed me to stay at the hospital for free. It was so hard, though, being in the neonatal wing, hearing all those other families loving on and enjoying their newborns and then going home with them as I continued to wait until the day we could leave with her. I believed that my newborn needed to be touching one of us almost constantly- E had slept with us from the very beginning, even while still in the hospital, so having a long hall and many walls between us was a separation that wore on me physically. The few times I left the hospital to get some fresh air and a change of scenery, I think I had something resembling a mild panic attack. I would have trouble breathing, my pulse would race, and I just felt anxious until I was back holding her again. At the same time, I was experiencing my first nights without Essie. I had never been away from him overnight before. Those four days I was worried about when I thought all I'd have to deal with was a c-section seemed like nothing compared to 10 nights in another state.
I'm not sure if it was the pain medication I was taking from the operation or just plain shock, but I felt very little emotion during the NICU days. That first day, I remember looking down at my tiny little girl, who had had a healthy, uneventful pregnancy and had been born on her due date and just wondering- what were we doing here? It was a surreal place. There were no windows and the lights were always very dim. Most of the time, the only sounds were the beeping of machines or the low talk of the nurses to each other. It felt completely removed from the rest of the world. Suddenly, we were in a new category of parents. Our daughter was most likely going to have special needs. We both come from families with very little health concerns- I always took my health for granted. I had stepped foot in a hospital less than five times in my entire life- and almost all of those times were related to visiting people who had given birth. And yet, here we were. I couldn't wrap my head around it.
They finally figured out that the blue episodes were seizures, but this lent little knowledge to her state. We were just going to have to wait and see if there would be cognitive or physical delays; if the seizures would appear throughout her life or if she would outgrow them; if she had a condition with a name or would have no further health concerns. There was one Dr. in particular who was determined to give us an answer as to why this was happening, but at the same time told us that the best news would really be that there was no answer to the seizures, because that meant she might just outgrow them without further complications. Ultimately, that's how we left the hospital: without answers. They had figured out a medication that seemed to stop the seizures (Keppra), but that left her sleeping almost constantly. She was to be hooked up to a monitor in case her breath stopped or her heart slowed, an infernal machine that would go off throughout the night because she liked to sleep on her stomach and this made her breathing shallower. We were trained in CPR in case a blue episode came and didn't go away, and I was petrified she would die in my arms, because I still had a hard time recognizing the episodes when they did come.
Interestingly, that first night I was reunited with her she was lying asleep in my arms and I was just watching her. J and I had been lovingly joking to each other about her short legs since the ultrasound, and her arms and legs did seem to be disproportionately shorter than her torso, with its hugely distended belly. Suddenly, I thought to myself, "maybe she's going to be a dwarf." "Maybe that's all it is." I didn't realize then how many health problems people with dwarfism can have, so at that moment it would have been such a relief to me to know it was dwarfism and not a more dramatic physical disability like CP, which had been proposed at one point as a possibility. When I asked the medical team in the morning if Belalu could have dwarfism, though, they resoundingly told me, no, it wasn't that. This strong negation of my guess then obviously made her diagnosis nine months later so much harder to grasp.