Reflections: I thought I had it all figured out

I had it all figured out, I imagined us getting inside the NICU, I imagined Christopher to look at Iva and know her instantly, I imagined that upon placing Iva next to him, his breathing would improve and I had imagined this reunion to be the miracle we had been dreaming about since the day we realized that Christopher had BPD some 100 days ago.

I couldn’t believe that the NICU allowed Iva to come meet Christopher for the first time. It was Sunday December 16, 2018, Iva had been home for two months after staying 50 days in the NICU. She and Christopher have been separated at birth and haven’t seen one another since. They had been obviously inseparable for 28 weeks and 5 days until they were abruptly separated by a preterm delivery.

When Christopher’s health condition was deteriorating, I had imagined that he had missed Iva. I often wondered if he had lost his reason to live since she was not by his side. I had imagined that he thought she didn’t make it and thus didn’t fight for his life.

I was driving slowly to the hospital, it was the first time that I drive with Iva alone. Plus I was driving my dad’s car. How silly of me to have forgotten that there were no cars in the parking?! I am glad my dad’s car was nearby. On my way, I was playing calm music, I was in a great mood, I was sure that this was the moment we had been waiting for, I reach the parking, greeted the security man positively, got up to the 8th floor, got dressed NICU style, held Iva, took a deep breath, then entered the NICU.

One part of me was scared that I was getting Iva once again to the NICU, what if she catches anything, what if she gets sick and they take her away from me again? I didn’t believed that I had her home, how did I even get here again to the place where she spent lonely night alone by herself crying herself to sleep? Why did I get her to the nurses who treated her like number 812A?

I look at her all dressed up like a doll, I remember that life is all about taking risk, I knew that she was strong and that she was here to support her brother, actually the whole family was here to support Christopher and I was so anxious to have us all united for the first time.

I had never imagined that we would have to wait 111 days to all be together in one room.

Anyway, back to the NICU, I look towards Christopher’s isolated room, Fady was already there with him, fully dressed in blue. It turned out that Christopher was wearing blue too… they blended well.

My heart skips a beat.

We enter the room.

I kiss Fady, then we face Iva and Christopher to see one another.

I look at the monitor, it was still 90.

I looked at Fadi, he looked back.

Iva and Christopher each look in a different direction, then one after the other, they start burping.

Okay, we like the interaction, maybe this is baby language.

Then they start farthing one after the other, excuse my French.

Then each looks in a different direction as if the other doesn’t exist.

Christopher’s oxygen saturation reduces, the machine beeps, a nurse comes in and increases the oxygen.

I look at Fadi and didn’t say a thing, we actually never talked about it, but I was sure that we both were disappointed yet another time.

We had been waiting for a miracle for 111 days. Each day we thought of a new solution, a new medicine, a new doctor and 111 days just seemed like a lifetime…

As I left the hospital, I felt an ache in my stomach, I tried to toughen up, but I couldn’t, I collapsed and started crying. I was leaving a part of me with total strangers, with people whom I didn’t trust, with people whom I knew didn’t love him and most importantly with people who saw him as a lab experiment and were learning and experimenting on him. All my life I hated hospitals affiliated with universities since patients would be trials for students, when the twins were born in the wrong time at the wrong hospital and stayed at the NICU and I saw how residents were dealing with them, with us, I just dreaded this whole system even more.

Fadi and I had rented a room near the hospital since we couldn’t commute from our house to the hospital daily, we had spent 50 days away from home, in a city that was not ours, far from our family, we hadn’t allowed anyone of our family or friends come to the hospital, we had been totally secluded from everyone for 50 days, then came the other 61 days where I was home with Iva half of the day and for the whole night. I had been visiting Christopher during the day since I couldn’t trust leaving him alone in the hospital. Fadi was going to work, and spending his mornings and evenings with Christopher, then coming alone to a cold room that felt nothing like home.

111 days didn’t feel like 2664 hours, nor like 159,840 minutes. They felt like 9,590,400 seconds. And each second was worth of distance run same as the poet Rudyard Kipling mentions in his poem “If”.

Now if 111 days felts this hard, I still do not know how the past 367 days passed with more than 52 doctor visits to more than 12 doctors and after trying more than 22 different treatments.

So far we have been searching for a miracle for 478 days, 11,472 hours, 688,320 minutes and 41,299,200 seconds and we still have hope that today our miracle might happen.