The post where I go home ... and Ella becomes my daughter

So weird, to go home. So lost. Confused. Trying to cling to normalcy but not knowing what the word means, or who I am. I can't drive, but it's almost a relief because I'm not sure I want to go in to see this person who is surreal and not a person to my rational, silently screaming conscious.

I curled up for most of the day, alternately trying to sleep and alternately crying and alternately taking care of my son however I could and alternately trying to make lists and organize, organize, organize my life into sense again. But it was all lost, in the daze of my existence.

I took my son to our annual trick or treating event the next day, the 28th. So odd, to be walking around on the waterfront having undergone major surgery only four days earlier. This heartbreak ebbing in the back of my mind.

So let's move through some days here, sweep them out of the way so I can move forward virtually as I have in reality. I wasn't able to visit Ella every day because I wasn't allowed to drive. At least, theoretically. I started driving again on the 31st, against orders. But I didn't go every day at the beginning. I did call daily, though, several times sometimes. So here are my brief notes:

29: To see Ella — breathing on her own (w/CPAP), stopped my milk. PIC line doing well

30: Ella — was breathing all on her own while nurse was doing care; they took out umbilical cord line because she doesn't need it:) Trying my milk again. L over.

31: To see Ella:) Breathing well. Having Bs — Bradys w/heart. Cries. Breaks my heart. (It was so sad, so unhuman almost. Devastating.)

1: See Ella — meets S Doing well! Sleeping peacefully. 693 grams

2: Ella — Doing well; they've increased my milk to 1cc per hour, auto feed. She's at 703 grams:) (And here's a heartbreaking story: It is this night that my son goes to our French doors, opens them and starts outside. I ask him what he's doing. He tells me he's wishing on a star so that when we go to see his girl the next day, we will be able to bring her home with us. I gently tell him it probably won't happen, and he says, "But Mama, if I don't wish, it'll never happen.")

3: Ella:) (And as we leave, my son says sadly, "I guess my wish isn't going to come true." How do you deal with such understandings by the loves of your life? How can you cope with another overwhelming depth of empathy when every emotion is so fragile, so teetering already?)

4: Ella — 753 grams.

5. To see Ella w/son — Gained weight, but having hard day with oxygen and regulating food. (Scratched out this day is a midwife follow-up appointment. Note the photo below, of Ella being read a Halloween story by her big brother!)



6. R. over. To see before parent support group: Ella — Doing better w/new kind of oxygen. Concerns about possible infection. Monitoring closely, but taking no action for now.



7. Ella — Doing better and gaining weight. No sign of infection.




8. To see Ella Bean — 800 grams. Doing my better. I love my girl:) Stretching and yawning.


(THIS!! This right here! This is the moment the terror dies and this unknown form becomes human ... becomes my DAUGHTER!)

Kicking me out

Gosh, it's been awhile, hasn't it? I haven't wanted to write, at all. I think I'm moving away from the pain and not feeling like it's so relevant anymore to my life. How wonderful is that? But there's still a story to tell.

Saturday was discharge day. I was surprised, to tell you the truth, that I'd be treated like any other C-section case: The boot after three days. There was nothing at all normal about what happened, and I could see that as plainly as anything. I didn't understand why they didn't either.

But I was up and moving, slowly and cautiously, and I worked to get myself packed up. There were various bits of things to take care of. But it was the flowers that my dad and sister brought that I think about so sadly. They were a bouquet of tiny yellow and red roses and buds. But they hadn't been put into water soon enough, and so when I moved them, many petals started to fall. Again, in that suppressed terror of exactly what could be lost, I decided not a single one of those petals would be left behind, and I gathered every one.

So another friend was coming that day, and my son, too, would finally meet his sister. He'd been prepped on what to expect by my ex, but I was so scared. When he arrived I tried to show him some photos of Ella that I'd taken with my digital camera. And I tried to read him the children's storybook they'd given me called "Katie's Premature Brother." And I tried to explain what he would see. But he just didn't want any of that. He was simply too excited to see his sister.

"OK, Mama. OK. Let's go! Let's go! OK, OK. Let's go meet my sister!"

So we went, and happened to run into my friend at the NICU; she'd thought she was suppose to meet us there. As a gift she'd brought along the two things I craved the most during the pregnancy: Mentos and Perrier:)

We all scrubbed and I took my boy in to meet my girl. Later, my friend would tell me how she felt honored and privileged to have been there the moment my son saw Ella. Because this is what he said:

"She looks like a butterfly who's just come out of her cocoon!"

And

"She's SO beautiful!"

And

"She's so beautiful, Mama!"

And other exclamations I've lost in the wave of those first words.

Never, never did he ask about the wires, or worry about her. He saw only this tiny human being who was his sister, the girl he knew I'd have and the sibling he'd wanted. I don't know how I can possibly explain how extraordinary that moment was. In the scope of human existence, it's simply stunning. He later wrote a story about Ella, mentioning that moment specifically, for a contest. I'll share it later.

Eventually, inevitably, it was time for us to go home, my family-minus-my-daughter.

As we packed the car, my dad put some of the flowers — including the red and yellow roses — on the floor under his legs. I worried about them the whole way home.

And then we left. And as we exited the parking garage, my sister driving, my dad in the passenger seat and my son and I in the back, the despair and exhaustion stole me. I started to cry.

My little boy took my hand and said to me, "I know why you're crying, Mama. You're crying because you worked so hard and we have to leave the baby in the hospital." And I simply put my head on his lap and cried myself to sleep while he stroked my face.

I went that route not so long ago, on a return appointment to the hospital. And I was overwhelmed with the memory of it. I am overwhelmed now, at the humanity and empathy of my first child.

And when we finally made it home and I bent over to get the flowers my dad had put on the floor beneath his feet, I realized little yellow and red rose petals were everywhere. Mashed into the floorboard and not mashed at all. And as I stood up to flee, I saw them, and would see them for weeks, scattered in the gravel of my driveway as well.

I feel really grouchy today. I don't want to write a damn thing. Except that.

The post where I see lizards! But I guess I like them

So I've met Ella, that Thursday morning. I'll move through the rest of Thursday and Friday here, so I can get to Saturday in the next post, then zoom through. At some point, I need to get to the present.

One thing I did forget was that after I kind of came to after being taken back to my room, at some point, I remember that I was desperately thirsty and virtually begged for water. They wouldn't let me have any until after I'd had my own, erm, bowel activity. Sorry. Something about how my stomach would swell up and I'd explode if I got water and my innards hadn't returned to normal, independent function after the natural shutdown that occurs with the surgery. So they let me have an ice chip or two. One nurse did let me have a glass of water after I promised not to swallow but only swish, but GROUCHY ASS nurse stared killer eyes at me (undoubtedly envisioning me as I burst into tiny bloody pieces) and that didn't last long. But it was another of those intense moments of gratitude, where I would have sold my soul for a Super Big Gulp cup of Third World country water.

Thursday. There were so many little things, as has been the case with all these posts, that I won't remember. I called people to let them know what happened. I had panic attacks. I watched TV. What stands out are the following memories.

At some point during the morning, I think after I was back in the room just after seeing my daughter, I was trying desperately to sleep but could not. As I would sink into that tipping point, I would find myself gasping for air. Even though I could once again take deep breaths without any oxygen (that's how quickly the slide began to reverse) and could prove it to myself, I could not calm down enough to let myself go.

The nurse came into sit with me while I tried to sleep, and it was the same pattern. Terror overcame the point of release into sleep. Eventually, she went and got something to put into my IV, and I did sleep. Later, the social worker came to talk to me again. I had other visitors, too, to discuss the experience and to apologize and this and that and the other.

At some point this day, I was moved onto a different floor, into the post-partum recovery room. This was a ridiculous thing, too, and I'll try to explain why. This room was for EVERY recovering mother and family. It didn't matter if you'd lost your baby or your birth was traumatic. It was the same procedure for everyone, including this ridiculous white board where they'd erase and fill in details, such as who your nurse was at the moment and what your "tasks" were. (My "task" was to pump every three hours, which I found utterly ridiculous because what would be the point when my baby wouldn't make it?)

And there was one of those dorky posters with the cartoon drawings of people, about what to expect, either if you'd delivered vaginally or C-section, and how you needed to take your baby for a hearing screen and a post-release checkup within a certain amount of days. Except I wouldn't be going home with my baby and thanks the fuck for the reminder ...

A lactation chick came to teach me how to use the pump. I don't remember a single word of what she said. I just remembered her face, and when I ran into her again a few weeks later, I told her I didn't remember a single thing.

More tests to check my post-delivery health.

And at night, my dad and sister came. By this point I was able to get myself into the wheelchair with slight assistance from them. Because I couldn't yet exactly walk (that was on my "tasks" list on that stupid-ass white board), I had to take an elevator up a floor to the NICU ... except when we got to the elevators, the fire department was conducting a drill and the elevators were not working. Staff randomly walking by assured us the drills never lasted long, but it did. Eventually, I sent my sister and dad to see Ella and I sat in front of the elevators in my wheelchair bawling. I didn't see Ella then, though I did go back later.

It was the first time my dad saw his granddaughter. He's never told me this (my sister did much later), but at this point he didn't believe either that Ella would live.

They went home, and the nurses wet themselves (hah!) waiting for me to be able to pee on my own for the first time (no more catheter.) I was surprised, too, that I'd have to worry about bleeding. Duh, it's all connected to the same places, but after nothing else was normal, why would I have expected that to be?

More extreme panic as I cannot find sleep in the gasping and choking for air, and more of the mystery drug.

Friday. I went on my own (after being helped into the wheelchair) to visit Ella again. I remember this time because I guess I must've been showing some ass because Claudia (the NICU nurse) sweetly and subtly adjusted my gown.

More tests.

At one point, I was visited by a doctor leading a group of maybe four or five med students. He came in (didn't bother to ask) and asked me questions about the experience, explaining my "case" to the students first. Random questions about my health, my life. And then, I swear to god, he actually took off his glasses, held them in a hand that also held a pen, chewed on the end of a temple and regarded me. I actually said, "You are going to ask me about my childhood now, aren't you?" And I'll be damned if he didn't do just that!!

Friends came to visit this day, one bringing chocolate and rubbing my feet, another bringing a sweet little stuffed rabbit and a desperately needed book on premature babies. I took one to see the baby. And I received phone calls from friends, family and friends of friends. Thank you all; I love you all so much.

All the while, I was becoming more exhausted, but I was terrified about falling asleep. So I begged my family to stay with me that night, because I was so scared. My dad "slept" on a horrible hospital couch/chair setup he made in the waiting room, and my sister slept in the room with me. And here comes a story that's already become a family legend.

As I was drifting off to sleep (AGAIN after they'd ended up having to give me something to knock me out because the panic stole my dreams), I muttered something. My sister said, "What did you say?" And I, in my drug-sleep-induced state, replied in a very enthusiastically bright voice, "Lizards! I see lizards!" To which my sister understandably said, "WHAT?!" And I replied, "lizards!" in a very happy, content voice. And then began to snore.

Of course, I remember none of this. She could be making it up.

Take note of this

Remember an earlier post where I wrote that I'd scrawled a message to myself to get off the medication? Well, since I'm coming up to the point where I realize how screwed up I am (ed. note: was! I mean was!) because of the mucky stew of all the drugs, let's insert that note, oh, right about


And, because I know you've been waiting, the message left by my sister should look good somewhere around

I meet my daughter

I know — I promised an uploaded note. You're going to have to wait for now, as I want to introduce you to Ella.

The next morning, sometime. Still incredibly groggy but in immediate need of seeing my little baby girl. The nurse is very understanding, and gets a wheelchair in asap.

Getting out of bed was very humbling. I know — major surgery. I moved as slowly as I could, but it's hard to know how to move when you've been sliced in half for the first time, and I put too much strain somehow on my right side and sent this nerve-shooting ripping pain across the right side of my wound.

Pause. Catch breath.

Slowly, slowly, I make my way into the wheelchair and am given pillows etc. to make me more comfortable. I'm taken down a floor to the NICU.

I don't remember my feelings at this point. I think I felt that I was playing along — going to visit the baby as I should. But I did need to see her as well.

We checked in at the front desk in the NICU, and the procedure was briefly explained to me before I was taken into the smaller room where Ella was and introduced to her on-duty nurse, who in turn introduced me to her.

There's no way to know how such a situation would proceed, of course. My sister's note assured me of Ella's perfection, her perfectly formed creation. But could you truly comprehend being presented not with a healthy newborn into your arms, but this:





If the top picture of Ella takes up about a quarter of your decent-sized computer monitor, then you're seeing an approximate life-size representation of my little one.

Though I'd been told after delivery that she was an amazing 2 pounds at birth, in actuality she was 1 pound, 7.7 ounces. She weighed less than a large yogurt container. And she was 14 1/4 inches long, just longer than a ruler.

As I gazed at my daughter, the NICU nurse, Claudia, who would be one of Ella's main nurses during her time in the NICU here, gave me a very brief introduction to begin my degree in NICU 101. She explained what some of the wires were for, what the monitors meant. It was. Hm. Overwhelming? Oh, yes. Terrifying. Numbing.

But I don't know that much penetrated my shell-shocked state. I know now that I was in shock, that the shock would last a good 10 days. It carried me through in a fog, and I'm sure protected me on a deeper level than I can ever understand.

After a bit of time, Claudia suggested I go back to my room to give myself more chance to recover. She told me that I could visit anytime I wanted but insisted I needed to take care of myself first. I don't know if I was truly exhausted or I just couldn't take anymore or I needed an excuse to flee, but I was grateful to her for giving me a way out.

There.

I admit it, and it makes me so instantaneously regretful. Nothing would have prepared me for what was happening, nothing at all, so there was no way to know the "proper" way to be. And despite later assurances that there simply IS no "proper" way to deal with everything, I still can't help wishing I'd reacted differently. Even when I can't remember how I exactly reacted.

Isn't that the pisser? I can't give myself a break even when I don't remember the minute details of how I was. Even if I was merely human.

The laters, part 1

It's probably a good time now to backfill a bit, share another perspective of the situation and bring some clarity to what happened. It was the first major surgery, the first surgery period, that I'd ever had, and it was the ultimate in traumatic. Obviously.

My sister filled in some of what she witnessed, and it will add another perspective.

After they took me in, she waited around for some time before they came to tell her how to suit up. She donned the protective things, was covered head to foot in egg-blue scrubs, mask, etc., and ushered into the operating room.

She said she was overwhelmed, immediately. She didn't see me at first among the multitudes of people and machines, it was so overwhelming. Then she came over to stand near me.

During the operation, she said I wasn't screaming as I thought I was, but muttering. She was the one who told the assembled medical professionals what I was saying when I was moaning in pain. She translated my thanks to them for saving mine and my baby's life (the baby I knew would die).

At one point, she had moved aside, worried she was in the way. When I began to beg for her hand, she came back.

And when Ella was born, she saw her lifted above the gape in my body. She said the baby was miniature, but perfectly formed, very clean aside from a spot of blood on her leg. They took the baby to the room next door to put her into an Isolette and administer immediate care.

And when the doctors began to sew and cauterize me closed, the smell made her woozy, so woozy that a nurse urged her to step away.

After Ella was whooshed by and briefly shown to me, she followed the baby contingent out, to see where they would take her. Then she went to my recovery room, wrote me a note and headed home. I'll try to upload the note for the next post.

As for myself, during the operation, I was pretty aware of what was going on, and I was in acute pain. It was later explained, when the anesthesologists were trotted in to apologize for it and for the "comfort the patient" dialogue, that it's impossible to know how a person will react to pain medication, or how much would be enough. They'd given me all they could and I was still in pain. I felt the tearing, the cutting, as I wrote in the last post.

But perhaps it was the blue drape in front of me that really affected me the most profoundly. I thought I would be able to see at least the doctors' heads above it, but it was literally a few inches from my face, hanging vertically. The post-op visions that repeatedly danced across my vision, the "Vivid blue lines with whisps of thread tendriling about them, evenly spaced around darker squares muted at the edges," were, in fact, of the too close curtain. Take a cloth and hold it as close as you can to your eyes. See how it patterns? See how the threads whisp and blur the edges of the spaces between?

On top of everything, I was told later that the operation itself was much more difficult than they had anticipated. It lasted three times as long as is normal.

I've still not recovered emotionally from the operation (along with everything else I've not recovered from.)

As for the hallucinations. I'm sure you'll dismiss them with the notion that they're attributable to the drugs I was pumped full of, and I've no doubt that's a reasonable conclusion. But why would I bring my grandparents to join my great aunt, for whom my daughter is named?

I do believe their souls came to me that horrific night. I don't know if they came to comfort me in my emotional and physical suffering, but I do believe they came to claim Ella and that their presence was meant as solace that they would care for her.

There was no fucking way I was going to let them simply take her.

And so I begged. And did not care if my daughter would be whole. Rational thought was torn away when my daughter was ripped out of my body.

And so I begged.