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Friday, July 5, 2013

Miriam's Story: Deliverance Into Life Installment #3

This is installment #3 of Miriam's birth story. If you missed the first and second installments, you can read them here: #1 and here: #2.

I knew it was a message for me. And I took a curious and honest—but still hesitant and a little uncertain—comfort in it. But I was worn out. I hurt. The layer of abdominal muscles under the incision burned with a searing pain. It was worse when I walked. I remember that I napped, and then I wanted to go back to NICU. I buzzed the nurse’s desk to ask for a wheelchair lift to the floor above. But no one could come for me. I wasn’t in the mother-baby ward, because I didn’t have a baby with me. They had put me on the maternal-fetal medicine ward.

All the other women on my hall were experiencing high-risk or problematic pregnancy situations. I was the only one who was no longer pregnant. But I was not the only one experiencing fear, trauma, concern, bewilderment—or worse. The woman in the room next to mine was actively losing her child. I remember her screams when she got the news that her baby was gone. My heart still breaks. I never saw her face. She was gone the next morning. I just remember her screaming and screaming. Rachel, weeping for her children and refusing to be comforted. I’ll carry her with me always. I am so sorry.

I didn’t want to wait. I wanted to be with Miriam, every minute possible. So I walked. Less than 24 hours after that traumatic surgery, I walked from my room, to the elevator, up a floor, out into the elevator lobby where a vintage wedding gown was on display behind glass (a wedding gown, in the hospital—I’m not sure why) and through the “family only” door into NICU. And there she was. But she was no longer intubated.

Her cheeks were swollen and chapped from the tape that
had held the vent tubing in place. She kept her eyes squeezed
tightly shut in an expression that I thought suggested that
she hurt and was trying to endure through the pain.

Her little cheeks were red and swollen from being irritated by the tape that had held the breathing tube in place. Her little fists were still clasped tightly, but the gauze was gone. She wasn’t strapped down now. I could see her whole face. Her eyes were still squeezed shut, so she didn’t look like she was resting comfortably—to me it just looked like she hurt and she was trying to shut that out—but she was breathing on her own. She was breathing without a machine! Just a little more than four hours earlier I had been told she wasn’t likely to ever go home. And here she was, free of the machinery that had been doing the breathing for her.

Nurse Sandy couldn’t have been prouder. “You should have seen her!” she said. “We were changing the pad under her and had let her loose for a little while, and do you know what she did? She just grabbed that old tube and pulled it out! Pulled it out all by herself. You know, if she don’t need it, we won’t force it back in. A baby this strong—she’s not so sick after all. You just watch. Yep, I know my baby. I know my baby girl. She’s a fighter.” A fighter. With POWER.

Nurse Sandy probably called all the babies “her baby.” But I took it to heart that Miriam was special. Every shift that Sandy had for the next week, she came in to see how “her baby” was doing. It comforted me to know that she felt such a bond with the little one in her care.

From that point, Nurse Sandy stopped saying, “A baby this sick…” The next day, she confided to me, “She’s not sick enough to be in this section. She won’t stay here long.” It took another day for the amazement to wear off on the powers that controlled her place in the unit, but she did get moved, and not just down one section, but from the most critical care section to the least critical care section, bypassing all the intermediates. I don’t remember the letter designations, but it seems to me she moved instantly from A to something like E or F. And every day, she got stronger and more alert. Every day, her vital signs got closer and closer to stable. Every day, she seemed more and more like a normal newborn. But she was still under close watch. Wires remained stuck to her chest and back, and a wad of tubes and hoses was plugged in through a tiny vein.

On the morning of day 5, I came in to see her. I had a routine now. I had been given a “sleep closet” on the NICU floor after I was discharged as a patient. It was a tiny room with a twin bed in it where I could stay. There was a public shower down the hall, and a breast pump room adjoining NICU. So that’s where I lived while Miriam was in the hospital. I went from my sleep closet to the pumping room, took my milk to a plastic shoebox labeled with our name and stored in a freezer at the center of the NICU facility, then went to sit by Miriam for as long as I could, to talk to her, to tickle her with the t-shirt I had been sleeping with at times to transfer my scent, the shirt I could leave with her at other times when I would be gone, so she wouldn’t forget me. Then back to the pump room, back to my closet for naps, and the cycle repeated. But day 5 caught me by surprise.

When I walked in that morning, the cluster of tubes and wires was no longer in her little arm. It had been moved. It now projected from a vein on the very top of her head—a giant mass seemingly plugged into my baby’s skull. Into the brain, even? What did this mean? It looked horrifying. I grabbed the nearest nurse—it wasn’t Nurse Sandy—and asked what was going on. “Oh, it’s nothing unusual,” she said. “There’s a really good vein in the head. It’s really better than the arm.” Business as usual? I had a hard time believing her, because just then she pulled from a drawer an 8-inch pair of shears and a knitted newborn hat. She whacked the pointed top off the hat, creating a round hole at the top. Then she unplugged the mass of wires, fed them through the hole in the hat and back into Miriam’s head, and tugged the hat over her little skull. If this was business as usual, why didn’t NICU have hats ready-made to accommodate such a situation?

The shock of the unexpected image and the shock of the butchered hat reinforced one another, and I feared there was something she wasn’t telling me. But it seems it really was just that way. A year or more later, I was able to recount this experience to a woman who ran the Helen’s Chapter of Threads of Love, a sewing ministry that provides clothing to NICU as well as beautiful, hand-made gowns for the infants who don’t survive. She developed a new knitted baby hat which already featured a finished, “meant to be there, to show we are prepared” hole in the top, so that mothers like me in the future wouldn’t be so caught by surprise when the giant shears came out to make adaptation for something they could have been prepared for already. I hope they still use those hats with the ready-made holes in them.

Day 5 was the day that nearly got to me, however. It had been such a constant process, such a cycle of routine, such a waiting and watching and being amazed but also being held at a distance—I still could not hold her, I couldn’t yet nurse her. All her feeding was coming through a lipid tube into her vein (in her head now). Sometimes she cried, and I could talk to her, rub her, tickle her with that t-shirt. But I wanted to hold her close. I wanted to get attached. I wanted to mother my baby.

Having recovered my composure after seeing the things stuck into her head, and the improvisation with the hat, I stood by her bed, just talking, singing, touching her as much as I could. It was his day off, but Dr. Jackson came by again anyway to check on us. I was so weary. I was so tired of being strong. I know I was being held by the everlasting arms. I do know it. But I am still only dust, and I was so tired. Miriam started to cry, and I wanted to pick her up and let her feel my warmth. I wanted her to hear my heartbeat again, like she had for most of the previous nine months. It was hard to hear her cry and for her to be there, lying alone, all wired up still. Dr. Jackson prepared to leave, and as he did, he just reached out one hand and gave me a gentle, compassionate squeeze on the shoulder.

There is something so powerful about kindness simply expressed. Bill had been around as much as he could, but he was taking care of the other little girls, taking them to and from his parents’ house, and still trying to get some work done all this time. This had really been a very lonely and isolating ordeal for me, and it had required a lot of me, constantly. That human touch transferred something to me that let me become human again. I felt it welling up inside me, and as soon as the good doctor was out of earshot, it just erupted. I burst into tears with such volatility that the nurse actually jumped. “What’s wrong?!” she gasped, as if something terrible had just happened before me.

“I can’t help her!” I cried. “I can’t DO anything for her! She’s crying! I can’t hold her, I can’t nurse her, I can’t DO ANYTHING!” And sobbing overtook me. Before she could even respond, Dr. Yoder was again on the scene. He had just been a few cubicles over, but he heard the ruckus I was making, and he so reasonably came to my rescue. This time, it was as if I, and not Miriam, was the patient. “Well, let’s just change that,” he said, and he took Miriam’s chart and wrote orders on it for Miriam to begin that day, that moment actually, to try to nurse.

She weighed hardly a thing. I remember how light she felt in my arms. At last! At birth she was just under seven pounds. I’m not sure what her weight was at this point, but I’ll bet it wasn’t more than six and a half. She was small and warm and frail, and as I drew her close to me, I realized that she was HUNGRY! Neither of the other girls (Emma, born a little early, had no idea how to suck; and little Jane had been a “failure to thrive” baby; eating never much interested her as a newborn) had ever attacked a breast like this. She flung her mouth open wide and dove in powerfully toward the smell of milk. The word “voracious” comes to mind. I do believe she made little “nom, nom, nom” sounds as she latched on. But maybe I’ve added that in my foggy memory. The nurse laughed and announced, “Well you sure know what to do with that, don’t you?”

Shortly, she relaxed against me. Asleep. My little Miriam, asleep in my arms at last.

All together, the baby whom I was not to get attached to spent a total of only six days in NICU. The last day was in a transition room, where I could practice all I needed to do beforehand to take her home and care for her on our own. But by that time, she was just like every other healthy newborn. I needed only a little special instruction on how to care for the stitches that the plastic surgeon had placed to reattach the top of her ear, which had been partially severed in the emergency surgery. Today, a fine white line just under her hairline leading to the top of that ear is the only remaining scar to give physical evidence of the events of her birth.

In just a few days, we had seen this beloved child seemingly held by the grip of death. And we had seen resurrection power at work, to restore her beyond all expectation of healing and life. Miriam finished first grade in May. She kept pace with her classmates and seems to be a solidly average student as far as scholarship is concerned. But she excels in creativity and athletic ability—and joy. The baby predicted to have developmental problems all her life walked earlier than any of her sisters. She talked by 10 months and had sentences shortly after the age of a year. At 15 months, she understood the concept of something being “new,” and she had named her favorite blanket (still her favorite, still a constant companion when at home or on the road) “Mike.” Who would have thought of that?

I’ll have to do another entry about the choosing of her name, and all we’ve found out about that name since bestowing it upon her. But for now, I will just tell you, it fits. Miriam she is and Miriam she always was meant to be.

We were told she would need very regular medical oversight for at least her first two years of life. You can read how God provided for that in this blog entry from December 2012. We call it yet another “Holy Ghost Story.” You could call it Installment #4 for Miriam's story.

But I know you won’t be surprised. We know whom we have believed. He is the Spirit of power, and not of fear.

I will leave you with some more pictures of Miracle Miriam, the one we call "Miss Firecracker" because of the power and spunk and fire in her.

Keeping up with big sisters. Emma at 7, Jane at 5, Miriam at 1. 2006
Truly a "big girl." Spring pictures from the end of her first-grade year. 2013. Seven years old.

Now a big sister as well as a little sister: with "her baby," Jill. 2011

To read more about how God has provided for Miriam even after her birth, during those scary months of waiting to see if disabilities and brain damage would surface, please follow this link.

1 comment:

Rebecca said...

Love you Rebecca, this is one powerful story!!!!!!! God is good