Wednesday, April 2, 2008

April fools (continued)

This Post is the continuation of April Fools. I have copied it into that post. If you've already read April Fools, then you have already seen everything I've written here. If you haven't read April Fools, you should go here, to start from the beginning.April, by Anna Joelsdottir

The day after Sylvie and Stella were born, the resident who had been so incredulous in the ER, paid me a visit in my hospital room. His head hung, and he seemed really devastated.

"I have to check your wound," he said, from the door, nervous about entering.

"Come in," I said.

"I'm really sorry I didn't believe you." His eyes were pleading. "It's just that you weren't like the other ladies when they're about to have a baby. You weren't screaming, or anything..."

"I don't ever scream," I said. I could sympathize with him. When things get really bad with me, I become very calm and quiet. "What good would it do? I didn't want anybody to panic -- it might make it harder to concentrate on what they have to do."

"How could you think about other people, at a time like that?"

"I was actually only thinking about the baby."

"Well, I'm really sorry."

"It's okay. In the end, it didn't hurt her." I fought to keep the threat out of my tone. He looked so contrite, but I also knew that if things had turned out differently, forgiving him would have taken a strength from beyond me.

"But it could have..."

"Yes, you should think about that. Always listen to your patients." This remark seemed to cause him some pain, but, for the sake of his future patients, I didn't say anything to soften that blow.

As he examined my incision, he let out a low whistle. "I've never seen anything like this," he said. "What was the name of the doctor who did your surgery?"

"I don't know." I still don't, but I'll be forever grateful to that kindly man.

"It's such a clean incision! No preparation, no nothing. All that chaos! He just cut... I'm sure you can't appreciate this, but what you have here is a thing of beauty." He shook his head.

"Thanks," I said.

* * *

My next visitor was the specialist doctor, who had administered the ultra special ultrasound when I first found out that Stella had died. He stood at the foot of my bed, and looked at me for a long moment. "May I ask you a question? I'm very curious..."

He didn't have my chart in his hands, and he didn't look like he had come to do anything medical to me. "What is it?"

"After you left the hospital, the last time?" I nodded. "You had to carry your child, your dead child...?"

"I felt like a human tomb, for my own baby."


"Yes, I was also still pregnant with a living baby."

"What is that like? I can't imagine how that would feel? What you must have gone through. And now you've given birth to a child who succumbed, but you have another child who is in the NICU?" He really looked amazed and overwhelmed by my experience.

"I don't know. All I know is that it is possible to feel devastating grief and great joy at the same time, that both emotions can exist together." At the time, I remember being under the impression that perhaps everything had happened the way it had so that I could testify to this mind-boggling human truth.

He nodded and then murmured, "Different people respond different ways to terrible thing when they happen. But it seems to me that the only way to cope with them is if you have some sort of religious belief?" That statement came out as a question, filled with urgency.

I nodded. Anyone who knows me knows that I could have said so much, with an opening like that one! But I sensed that he wasn't asking for my credo at that moment. I felt much more that I was in the presence of a man of faith, and that he simply needed confirmation from me that I was aware that I was in much better hands than his. My nod seemed to be sufficient for him.

* * *

Finally, the nurses got the okay to bring me to the NICU again. That afternoon began a kind of ritual that I would repeat every day for over six weeks. The nurse caring for Sylvie would roll a lazy boy recliner up beside Sylvie's incubator. I would scrub and, after I was discharged, change into a hospital gown (of course, while I was still a patient myself, there was no need to change), with the opening in the front, and then settle myself into the recliner. The nurse would pick Sylvie up out of her plastic box -- wires, needles, tubes, and all -- and settle her on the bare skin of my chest. Then she (or he) would reposition all the wires, needles and tubes, cover her with the first blanket, with the built-in bilirubin lights, followed by another stack of blankets, over her back, so that only her tiny head would peek out the top of my gown. This whole procedure was called "kangarooing." The recliners were viewed as part of the medical equipment on the unit. Those in charge had taken seriously the research that indicates that premature babies do better, the more skin-to-skin contact they have with their mothers.

They were also attuned to the fact that medical outcomes are much better for premature babies who receive human milk. Breast pumps, on wheels, were available there, as well as in a private room, reserved only for mothers to pump. They also provided me with my own pump, to use when I wasn't there, as well as with sterilized vials for collecting and storing the milk and a special bag with frozen inserts, for transporting it. Even while Sylvie was still receiving all her nourishment through her IV, the nurses would use a long Q-tip, moistened with my milk, to swab the inside of her mouth. Later, when she was ready to try eating, her milk had to be administered through a syringe connected to a tube that would deposit it straight into her stomach -- one cc every four hours -- it was so agonizing to see her eat so little, and to want so badly to see her grow! She was weighed twice a day, and I measured my happiness in half-ounces.

The nurses had a joke (which was perhaps only a half-joke) for me, each day when I was getting ready to leave the NICU: "Check that woman's pockets!" They knew how painful it was for me to leave Sylvie, and I had observed, once, that she was small enough to fit into one of my pockets. Those nurses truly amazed me. I could be (and was!) mesmerized by their hands, which never stopped moving -- restarting a tiny heart with a brief rub and a tap, measuring out precise doses of medicine, or repositioning the oxygen source to increase a baby's saturation levels. The most breath-taking of all was when a baby needed a new IV. They would dim the lights even further, and a team of nurses would gather around. The tiny needle, which looked really no wider than a thread, was lit with a red light. No one was allowed more than three tries, and when one of the nurses succeeded, she was everyone's heroine for the day. A couple of the nurses seemed to have a special talent for it, and the others treated these special ones as though they were spiritual adepts. It was more astonishing than watching a master cellist's fingers find the precise places on the strings of his instrument, because here, even more than beauty, life itself was at stake.

The other astonishing thing about the nurses was their ability to cooperate with one another without speaking. When the baby they were caring for could be left for even five minutes, they would turn to join another nurse, helping her to complete her tasks.

But the thing about the NICU that struck me most was the extent to which human beings had been able to create these sensitive and complex machines to do the work of the human body -- and also, what poor substitutes these machines were for what the body can achieve without conscious effort. We are indeed curiously and wonderfully made!

* * *

When I returned to my own hospital room that first evening, there was a note from the hospital chaplain waiting for me on my bedside table. This was not the same chaplain as the one who had prayed over Stella, but she was also young and inexperienced. She had been assigned the task of helping me to make Stella's funeral arrangements. She had left some paperwork for me and a brief note, in which she'd written my daughter's name in quotation marks: I need you to fill out these forms, so that the morgue can release "Stella" to the funeral home. Who could have guessed that two small marks of punctuation could cause so much pain and anger? Even as I tried to explain to myself that the chaplain was young and perhaps it was just a problem she had with English usage, I wanted to strangle her. When my nurse came to check on me, she found me sobbing in my bed. Wordlessly, she brought me tissues and then went to sit in a chair in a far corner of the room. She stayed there, for two hours, while I cried. She neither spoke nor took her eyes off my face. Her own expression was one of deep sorrow. She only left after I had quieted down.

The only date that would work for Stella's funeral was April 9, which also happened to be my birthday. By then, I had been released from the hospital. We took the three older girls out of school, so that they could be present. The funeral director had refused to charge us anything, even for the headstone I'd chosen or for the white coffin, the size of a shoe box. He told me that one of his daughters had died, before birth, and he would never charge for the funeral of a baby. He brought a dozen white roses to the funeral. Our Associate Pastor came to preside, bringing flowers as well, in case we'd forgotten. He performed the funeral liturgy in the cemetery chapel. When he sprinkled Stella's coffin with holy water, he told us that the Church recognizes three forms of Baptism: by water, by blood (the martyrs), and by desire. He explained that Stella had already received Baptism of desire, through our desire as parents -- because we had clearly intended to have her baptized. He explained that sprinkling her coffin was in memory of her Baptism. The funeral liturgy was so beautiful and healing. Rather than bringing us down, it made us joyful.

It was raining, and the cemetery was muddy that day. I wanted to stay to watch the burial, so my husband brought the girls back home. Our priest stayed with me, though, holding a big black umbrella over my head. As we stood there, I looked at the other graves near Stella's. Just behind her, and a little to the left, there was a large headstone. From where I stood, I could read the name carved into the granite: Francis Xavier Cabrini. What a gift that was to me! Such a great saint of the Church, who would be so near to Stella's final resting place. I entrusted my little girl to her special care, right then and there.

* * *

I was not allowed to drive a car for six weeks after my surgery. During those weeks, I always had a ride to and from the hospital (45 minutes each way), so that I could "kangaroo" with Sylvie for several hours each day; our neighbors, or my mother, cooked us dinner every night and cared so well for our older children after school, so that it was a holiday for them, and not a time of abandonment and sadness.

* * *

Just to explain the image at the beginning of this post: My friend Anna, one year earlier, had painted a series of pictures, one each day, during the month of April, 2001. I fell so in love with this series that I wanted to buy it from her, but I could not afford to buy all the pictures at once. I had made a deal with her that I would buy them, one by one, as I had the money. We were due to meet on April 2, so that I could pay her for the tenth picture in the series, so I called her from the hospital and left a message on her machine explaining what had happened and canceling our meeting. She rang the phone at my hospital bedside that evening and told me that she would give me the remaining twenty-one pictures, no charge. When I protested, she refused to listen to me. She told me that the pictures weren't hers to sell. They were mine.

* * *

Sylvie's pulmonologist and her retinologist were surprised by her rate of recovery. They each said they had never seen anything like it. Perhaps her recovery can be explained by the quality of care she received in the NICU -- plus all those hours of kangarooing and the breast milk that made up her whole diet for her first year of life. Or perhaps she is particularly blessed because she has her own patron saint, who is her mirror image, in heaven. I am grateful for all the gratuitous goodness that so many people, even strangers, showed us during our difficult time. But I also want to thank Saint Francis Xavier Cabrini and say, Keep looking out for my Stella, please.
Mother Cabrini


Freder1ck said...

and this one broke my heart. Such mercy!

Suzanne said...

Yes, that's the word, isn't it -- mercy.

Marie said...

Thank you.... for sharing this story, and for living it.

I've been sitting here for 10 minutes comparing the pictures of Sylvie and Mother Cabrini. The resemblance is astounding.

clairity said...

Good thing I keep kleenex in the office.

The story of my premature daughter, Claire, who like your Stella went ahead, happened about 10 years before yours. I don't think the concept of "kangarooing" had developed yet. I did have one long time of holding her.

Thank you for sharing this.

Alex Vitus said...

Thanks Suzanne.

Justine said...

Thanks, Suzanne, for the memories--both yours and mine.

Dumbstruck by the Mystery

...our temptation is always to impose our prejudices or our measure on reality -- except when we are faced with a fact that leaves us dumbstruck, and instead of dominating the fact ourselves, we are dominated, overcome by it. If there were no moments of this kind, the Mystery could do anything, but in the end, we would reduce everything to the usual explanation. But not even a Nobel Prize winner can stop himself from being dumbstruck before an absolutely gratuitous gesture. If there were not these moments, we would find answers, explanations, and interpretations to avoid being struck by anything. It is good that some things happen that we cannot dominate, then we have to take them seriously, and this is the great question of philosophy. If the conditions for the possibility of knowledge (see Kant) impose themselves on reality or if there is something that is so powerfully disproportionate that it does not let itself be "grasped" by the conditions of possibility, then the horizon opens. If this were not the case, then we could dominate everything and be in peace, or at least without drama. Instead, not even the intelligence of a Nobel Prize winner could prevent him from coming face-to-face with a fact that made him dumbstruck -- instead of dominating, it was he who was dominated. Here begins the drama, because I am called to answer. It is the drama that unfolds between us and the Mystery, through certain facts, certain moments, in which the Mystery imposes itself with this evidence. These are facts that we cannot put in our pocket, which we cannot reduce to antecedent factors.
-- Julian Carron in "Friends, that is, Witnesses."