Sunday, December 28, 2008

The First Real Scare

And there we were, going along; waxing rhapsodic about diaper changes and then the house of cards comes down. I had only slightly understood what a house of cards is. I am now intimately familiar with this architecture. It’s funny, there’s no foundation.

I’ve been quiet on this page since the earliest December because we have been in the hospital. Our Willa, ever the adrenaline fiend, thought she would give us a good ole fashioned scare and teach us a Christmas lesson of love and gratitude. Didn’t particularly need the lesson but thanks anyway baby.

The morning of December 5th I awoke to the voice of my husband saying, “Oh my God.” This has not boded well in the past. For good reason. And now we had this sight to rocket us up and down to Philadelphia to Children’s Hospital at 6 am: she kicked out her g-tube overnight and the stoma had healed over. She smiled.

Long story short, g-tube was replaced in office by surgeon, sadly not in her stomach and the two feeds we emptied into her abdominal cavity combined with her meds produced a very unfortunate reaction. The baby went blue, her pupils would not react to light, she would not respond to me and she went very quiet.

She had emergency surgery to fix the tube and clean out her abdomen but by then she was a mess. She required a blood transfusion, she spiked a temp of 104 degrees, she wasn’t breathing and her heart rate was through the roof. She was also in terrible terrible pain.

It was the first time we were scared for her life and it was a singular experience to put it mildly. Colin and I stood like scarecrows at the foot of her bed while the doctors worked on her, tubes and wires leeched to her tiny frail body. She looked like a doll thrown into a thicket of brambles and just as unreachable. A piece of my heart broke off.

We then spent two weeks rebuilding, slowly slowly recalibrating everything. Her meds, her feeds, her calorie counts. Rather than bouncing back there were bouncelets. But she’s home, smiling again and she picked up a few new tricks in the hospital.

She’s yelling. Baby’s first vocalizations of any great volume. Willa yells, then looks at us with the greatest wonder. “Yes, you did that” we say and again, always, with her whole face, eyes and body, she smiles.

Our Christmas lessons of love and gratitude? Love your children and be thankful for them. They can be taken away. It’s that simple. The piece of my heart that broke off took its own journey this month. It came back to me carrying a suitcase plastered with foreign stickers of exotic locales. But it came back. We all did. And I am so very very happy.

Tuesday, December 2, 2008

The Center Falls Apart, The Diaper Cannot Hold

I have managed to avoid the scatological in my musings here but this mum can stay mum no longer. I spend the predawn hours, covered, her ass to my elbow in poop. I knew parenting required its pound of flesh, and pee, and vomit with the inner workings of various mucus membranes being common parlance of my day. But we’re talking about bowel movements here that are beyond the realm of all that is holy. She’s 14 pounds. That’s it. Our cats are larger and in no way capable of this level of production.

A lot of my time is spent teasing out what’s Costello, what’s Willa and what’s random. There are all the medical considerations and then the developmental. We see so much through a doctor’s lens, or a therapist’s. Days are spent addressing issues that have nothing to do with parenting per se. We are bunkered in what I imagine mission controls the world over must look like: charts, important telephone calls coming in, a vague but persistent sense of threat.

But in those morning moments, wherein all is disgusting and bleary and bad smelling I feel most a mom. I suppose this is just to say, parenting is gross. Really really gross. It’s something we all share whether our kids have a syndrome or not. It’s the universal. If you had told me when I was on my three month’s bed rest that these were to be the moments I would cherish…well… let’s just say you might not have been invited back.

But they are. I do cherish them. She fusses, she relaxes, she wants me to kiss her feet and then she may actually, if I’m lucky, fall to sleep for a while: warm, comforted, freshly diapered and sweet smelling once again. I love her. I mean I love her with a passion that I have never felt. Even if at the same time I am desperate to wash my hands.

It’s the feeling of inclusion that most strikes me. When you have a baby that there are no books on you find a real challenge in recognizing yourself in anything. The books just do not cover this. I asked every doctor I met in the hospital in the beginning the same question over and over again. “Should I be reading parenting books? Or do they just not apply?” They never gave me an answer. None of them, and I asked many many doctors.

But how could they answer that? They didn’t know what I was really asking. My true question was, “Am I a mother? Is she a child? Are we just those simple things too?” I didn’t realize it at the time but that’s what I wanted to know. I had paged through my What to Expect and I just wasn’t finding anything applicable. I trolled Amazon for books with the keywords “disability, special needs, Costello Syndrome” to no avail.

I was an outsider amongst outsiders. My daughter did not have Down’s, did not have Cerebral Palsy, no Autism, no Noonan’s. If you had told me when Willa was in the NICU that these were to be the syndromes I would envy…well…let’s just say you might not have made it out of the room alive.

But sometimes I do. And again, it’s for the inclusion they offer. For a knowing nod of the head once in a while in a waiting room, for a doctor’s experience and for the absence of the following common exchange, “She has Costello Syndrome.” “Huh. I’ve never heard of that…”

And then there was poop. We all know poop. It’s something to laugh about with other moms. They have nothing to feel weird about nor intimidated by, not wanting to say the wrong thing, not knowing where to put their eyes, or how much to ask, not wishing to offend. We all of us belong in the “parenting is gross” moments and I thank God for them.

Diaper changes.

Yet again, who knew?

Wednesday, November 26, 2008

I.V. Pole

I’ve been thinking quite a bit about Morandi’s still lifes. Well, even more about Morandi I suppose and how he painted those same few bottles, vases, fruit bowls, containers of varying description for decades. He chose his palate early, he found his subject and he adhered to them faithfully. But these still lifes transcend. In this one it is a portrait, in this other a landscape. The every day objects of his small collection anthropomorphize, they grow outside of their function, they stretch the confines of their purpose. Morandi saw something more in these little objects and he found in them a life’s work.

We bought our house a few years ago. Spent the many hours painting the walls, hammering in the pictures, reconfiguring furniture. We took the time to step back and consider it. We locked it all into place. In all our iterations of how the bedroom would be set up never did we picture it with an IV pole. That was to come later.

Willa came home after her first month in the hospital to a fresh delivery from the medical supply company. We had an enteral pump with which to feed her, syringes, bags, tape of mysterious origin and an IV pole. That was the thing that stopped me in my dusty tracks. The IV pole is a serious thing.

For one, it’s large. For another, silver, new and gleaming. I’ve only ever seen these in one of two possible places: hospitals or movies. Which was I in?

It stands sentinel now in our room at the head of Willa’s bassinet. As she feeds overnight from her eight-hour ordeal, and ours by extension, the pole holds her pump and bag aloft. One of the many images of my life that sets a tableau of weirdness. It’s almost a normal scene: baby asleep in bassinet next to mom and dad’s bed, but wait, what’s that?

Everything in this house is just a little slant.

In the middle of the night I see it, the light from the street lamp setting off its curves, casting a bizarre shadow on the wall behind me. It morphs in my exhausted eyes into a beautiful tree, then a curling snake, a high rise for praying mantis, a robot of the future, an elaborate assistive laundry device.

It’s all in how you look at it.

This, all this, is life taking its own shape. There is the introduction of something new, throwing off all the corners, bleeding out the frame, forever twisting sight into a new reality. Even when we can order all our images, stack all the boxes, put in line all our life’s plans and intentions, they may decide themselves, “I am not a still life. I am a landscape. I am a portrait.”

Morandi painted his beautiful paintings in his bedroom. He had a set up to facilitate this, right there at the foot of his bed. In a little room, making little paintings of little things whole worlds were traveled, peoples met. I look at my room now and know that I have only just begun to see things in their new way. My eyes have been forever changed for objects. In this place they mean so much more than their function, their original purpose. Their meaning transcends and in order to see the beauty in all these new things, the beauty that I learn every day is stubbornly there, so must I.

Sunday, November 23, 2008

Dear Breast Pump,

Listen, I think we need to talk. This just isn’t working for me anymore. I’ve tried to figure out a way for us to move forward, spending more time together, making things special, remembering that you only want the best for me and my baby… But it hasn’t been good for a while now and after seven months I just have to know and trust myself that we need to let this go. We tried. There’s nothing you can say to me anymore. I wish you well, but goodbye…

And I swear to God it takes this level of commitment to get this infernal contraption out of my life.

Willa does not eat by mouth. She was never that into it as we say, it’s a universal Costello trait that held true and so I have been pumping since the day she was born, every three or so hours for seven months now and I am done. It’s killing me.

I looked up weaning in my trusty What to Expect The First Year and Jesus H. Christ; I haven’t been guilted this much since catholic school. You would think I was holding a meeting with the baby saying, “Look, I don’t love you as much as I should and I am going to take something away from you now that is incredibly important all because I am a selfish bastard who can never provide you with what you really need. Let’s just get that out of the way now.”

The other charming advice centers on how you are going to have an emotional meltdown as you sacrifice this bond with your child, throwing it away to oblivion, never to reclaim the closeness again. Once you sever the emotional attachment of breastfeeding you are half the mom you used to be. Well, sure I have an emotional attachment to the breast pump, in fact a codependent very unhealthy relationship but still… I will be happy to see the back of it.

Why do we do this to ourselves? Why? I mean really. I agonized over this decision for weeks, pumps attached to breast, wrestling with the decision. Then I told my husband. I asked him if he thought I was a bad mother. I sat on it more. Then I broached the subject with Willa’s nurses, on separate days, independently, testing out the words, listening to how it all sounded, “I’m thinking about weaning Biscuits.” I’d pause. “I mean, it’s been seven months and I am just so worn out and I’m not really producing any more and I think she’s gotten the important start she needed.” I wait again. I expect them to turn towards me, mothers themselves, nurses by profession safeguarding the health and well being of their young charges, I expect them to say, “You have to be kidding. Are you trying to kill your daughter?”

But they don’t. Not at all. They say, “That makes a lot of sense.” My husband says, “You did a fantastic job.” My heart tells me that it is just as full of fiery love for my girl as it was when the contraption pumped away. My breasts say, “Save us.”

And the rub of it all? Baby responds better to formula than to my breast milk. She’s more comfortable. She pukes less. She’s fine. Just fine. There is no haunting look in her eyes pleading me not to abandon her, there’s no hesitation in her grasp of my index finger. She appears to love me just as much.

So, bye bye breast pump. Thank you for our time together but now that it’s done I release you, and more importantly, I release myself.


Monday, November 17, 2008

And Then a Plank in Reason Broke or Who knew?

My first trimester was punctuated minute by minute with one of the following: vomiting, gagging, dry-heaving or at the very least an overwhelming nausea. I carried plastic bags in the car in which to retch while driving. I accustomed my coworkers to having me stop mid sentence, stare blankly into the middle distance for a second, then sprint to the bathroom to rattle the corridors with the sounds of my puking. It felt as if I had the worst hangover of my life for three straight months. Nothing I accomplished in my collegiate years could have prepared me for the brain crushing magnitude of this. Little did I know, these were to be the best days of my pregnancy.

At 13 weeks I went, alone, to my integrated screen. We all get these now, or at least our obstetrician's recommend them. I chatted with the technician about how, "Yes, this was to be our first. Yes, I feel awful. Isn't it all lovely?" I laid back and luxuriated in another ultrasound, peering into the hushed world of my growing child in the warm dark room these things happen in. The tech stopped talking. I noticed she was taking the same measurement over and over again. She was concentrating. I began to be scared.

An increased neuchal translucency. That's what we had. An increased NT. I met with the genetic counselor who informed me that this could mean Downs or another trisomy. That this could mean a heart deformity or a chromosomal abnormality. That I should have an amnio to investigate. That, then again, everything could be normal.

I had all the tests. The results stubbornly came back fine, every time. I continued to be relieved and tried with all my power to avoid the concern in my husband's eyes. To blot out all worry, all questions, all feelings something was wrong. I was angry with anyone who asked me about it. I was hell bent on normalcy. Then I went into premature labor at 23 weeks. I spent two weeks in the hospital. I took the drugs. I barely moved. I prayed to what I now knew was a daughter to stay with me. I begged her to keep living inside me because she was going to be fine. I held onto the roundness in the dark willing it to give her strength and I tried not to cry because I did not want to scare her.

Three months of bed rest followed. "The baby is normal. The baby is normal." The new thing that punctuated every thought, that kept me company through the long winter days. Finally the waters broke and Willa came. Well... the baby was not normal.

Willa's first month was spent in the hospital, diagnosing. We were lucky. Someone knew what it was. Our girl has Costello Syndrome. It is an incredibly rare gene mutation that happens randomly, causing all kinds of issues. There is not one system of Willa's little body that is not touched by difference, by some level of difficulty, by irregularity. She will have developmental delay, mental retardation, she runs a 17% risk of having cancer, she will never be independent. Our baby will be a baby for a long time. And then, our children have amazingly sociable and sunny personalities. They have a marked sense of humor, they are short, they have heart problems, they have long memories and remarkably well-developed fluid reasoning skills.

There are also so few people with Costello (1 in 30,000,000 that's million... It seems almost statistically impossible to get this syndrome. there are 300 people diagnosed in the world. That's world...) that we have no idea what to expect for her. Each child writes their own story, each child has their own combination of health problems, learning difficulties, personality traits, personal style, taste in music, age when requesting a cell phone or designer jeans. These kids are kids too you see.

Try telling all this to the lady behind the counter at the market who says, "Oh! You had the baby! Everything ok?" 


You learn something very important about people very quickly. Everyone is willing to take your lead. I do not burden the casual askers with too much information but I always tell them the truth. To friends and family I tell the whole long list. A list that is longer than the one above. It takes a while to explain it all. But there is happiness still in my voice as I tell it because this girl is a keeper man. I love her.

I have all kinds of opinions about medical technology. I absolutely ask the question,  just because we can, should we? I have alot to say about keeping such pregnancies and not keeping such pregnancies, about our role as parents starting at conception and the terrible responsibility of playing God.

But none of that matters now. Willa sleeps near me. I can hear her breathing and that hand I dreamt of holding on a dark night in the hospital reaches out for me. All that matters in my life is that I hold it and lead her far enough for her to be able to push me aside and walk on her own. Some day...