belly buttons, baby girls, and body confidence

My belly wasn't the same after this. I'm learning to love it anyway.
My belly wasn’t the same after this. I’m learning to love it anyway.

In response to some internet body-shaming, some other folks have declared this to be #BodyConfidenceWeek. And since Owning Your Awesome is kind of my wheelhouse, I figured I’d share a little body confidence here.

To talk about the confidence, though, I have to first say: carrying twins to 35 weeks and 6 lbs each, through some 55 lbs of weight gain and loss has changed my body. I still remember feeling the fiery sensation of my abs literally ripping apart, and they stayed that way. My belly button never went back in. My skin was stretched past its capacity to snap back all the way. These are not complaints, really, just realities. I made two people inside this body, and even though it almost killed me, I survived, and those little people are more than worth it.

In fact, they are what give me confidence, both because of the obvious love and delight they take in their bodies and mine, but because I want to protect them from messages that would have them do anything but love and marvel at the miracles of their bodies, and to do that, I have to show them how to love themselves by modeling self-love.

Right now, they’re obsessed with pointing out and naming body parts, but particularly bellies and belly buttons. I kiss their bellies when I change their diapers. “Belly belly belly,” I say as I tickle them and blow raspberries. They’re preoccupied with the part of me that was most changed by their entry into the world. When I’m sitting near them, they lift my shirt playfully. “Belly!” I say. Giggling, their little fingers point out my still-outie belly button. Softly, they tickle my stretched-out skin with their pudgy, sweet, dimpled hands. And in those moments, I don’t feel insecure. I don’t feel ashamed. I laugh. I smile. “You found my belly button!” I say. “Where’s your belly button?” They lift their shirts and stick out their little toddler tummies. They grin as they show me their belly buttons. All I see when I look at them are the perfect, wonderful ones I love. I know that’s what they see when they look at me too. In those moments, we love our bodies together. And that love is a gift that they give me, bigger than anything their gestation and birth did to my flesh.

two years ago, there were TWO

On this day in history, Jon and I went to my first prenatal appointment. 8 weeks pregnant, and so excited to hear our baby’s heartbeat and get the official confirmation that we were indeed having a baby.

Because the doctor was a friend, she gave us a quick ultrasound so we could peek at the baby. She jiggled the wand a bit and showed us a little blob inside a bigger blob on the screen. “There’s your baby,” she said. We heard the thump thump thump of the heartbeat. We watched the blob for a bit, tears in our eyes, and then she jiggled the wand again and said the words that I will never forget:

“And now we’re going to take a look over here at baby number two.”

I said: “SAY WHAT?”

And sure enough, there was another little blob inside a bigger blob, thump thump thumping away.

My sweet husband, who had suspected he saw another blob before the doctor showed me, well, his first words on the subject were, “You’re going to get soooooo big,” squeezing my hand.

I just kept saying “WHAT?!”

Twins had not even been on my radar. It never even occurred to me to think or fear the possibility. On the way out of the doc’s office, we started calling friends and family, and to a person, they all thought we were joking. I kinda felt like the universe was joking.

To anyone newly pregnant with twins out there, let me tell you, the shock is normal. I think we just kept saying “Holy shit,” to each other for a couple of months. And let me also say, it’s normal, I’ve learned, to have many complicated feelings about the whole twins thing. I really think I had to mourn the loss of a normal pregnancy, of the images I had in my mind of one newborn and a lot of snuggling and gazing into each other’s eyes. I only ever typed or thought of the word as “TWINS?!” for months. And some days I still can’t believe that I have two babies.

Mostly, though, I can’t imagine not having twins. There has never been one without the other, from the minute I saw them on that ultrasound screen. There is no Claire without Etta and no Etta without Claire. While I can honestly say that there is much of the exhausting early days I barely remember because of the mind-numbing sleepless HARD of it all, this twin gig keeps getting better. They ask for each other. They wake up talking to each other in the mornings. They tickle each other and hug each other and kiss each other, and yes, bop each other on the heads and steal each other’s toys and pull each other’s hair.

It’s been a crazy ride from blobs to baby buddies, but it’s also been a beautiful one. I wouldn’t have it any other way.

twins ultrasound 8 weeks

 

 

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looking back, seeing signs

A picture of me from the very start of my pregnancy, guzzling water, a pregnancy book beside me.
A picture of me from the very start of my pregnancy, guzzling water, a pregnancy book beside me.

I was just reminiscing on social media that this day two years ago was the day I woke up and confirmed what I suspected: I was pregnant. I had told a friend, Savannah, that I thought this might be the case, what with the sudden onset of fatigue, extreme thirst, and sore boobs, and she called me while I was still staring at the plus sign, which appeared IMMEDIATELY, completely freaking out. This is how she came to know I was pregnant before my husband did, because he was out on a 30 mile bike ride. I also believe I hung up on her abruptly when he walked in the door, and I remember saying “We’re having a baby!” and insisting he go look at the test on the bathroom counter. He took a picture of it, but don’t worry, I’m not the sort who posts pictures of things I’ve peed on online. That picture exists in one place now: a book I made for the girls about my pregnancy.

I remember the anticipation and excitement of that day. I sort of laugh at myself then, blissfully unaware that in a few short weeks, the TWINS?! bomb would be dropped on me, and all my visions of myself with my ONE BABY would go out the window.

I’d like to think I was picturing mornings like the one I just had two years later: waking up with the girls, bringing them into our bed for snuggles and bottles, moving to the den for playtime, getting Claire to her preschool where she went smiling into her teacher’s arms, returning home to Etta eating cereal with a spoon like a grown person while wearing red monkey pjs and watching Dumbo with her daddy.

I fired  up my laptop to write a blog post about the crazy ride I’ve had since then, and was slapped in the face with a great big SIGN.

Google is my homepage, as it is for zillions of people. And today’s Google doodle is a beauty– you should check it out. In honor of composer Claude Debussy’s birthday, his piece, “Clair de Lune” plays over a short animated film.

I had no idea it was Debussy’s birthday, but of course it is. Of course the day I found out I was pregnant is the birthday of the man who wrote the song that gave my Claire her name. You see, when we thought we were having ONE BABY, we were going to name her Etta Laine, after my grandmother LeaEtta and Jon’s grandmother Elaine. When we found out we would be having TWO girls, we decided to give each one a grandmother’s name, so they’d be Etta and Elaine. But I didn’t want them to have the same initials, so it was decided that we’d use Elaine as a middle for “baby B”. While we tried to think of a good first name, Jon sat at the piano, playing Debussy, a favorite of ours. He was playing “Clair de Lune” when he stopped and said, “What about Claire?” I loved it, thought Claire Elaine sounded lovely, and it was settled. (Etta’s middle name is Jane, for Jane Austen, a favorite author of mine who shares my birthday.)

And now, two years later, I find out the man who gave us the song that gave her her name was born on the day that my journey as a mother began.

It’s just perfect. It’s just a sign. It’s a little window into the story we’re living, often unawares.

These days, I hear “Clair de Lune” almost every night– it’s on the girls’ lullaby playlist.

Ms. Bufflo goes to the capitol

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Image I took on my way inside to testify before the committee, via my Instagram feed.

Today, I spoke before an Arkansas senate committee. Last night I was on the evening news.

Rep. Andy Mayberry is making national headlines by trying to ban abortion after 20 weeks of gestation (that’s the halfway mark, FYI). He claims this is because this is the point at which a fetus begins to feel and respond to pain, and he cites some studies, but this is hardly an established fact, and is controversial in the medical community. In the committee today, he testified that 98% of abortions happen before 20 weeks. Why would the minority get such a late abortion? It’s not because they just didn’t get around to it or had a sudden change of heart. Something big happens at 20 weeks. It’s the point in a pregnancy when the “big ultrasound” happens. The one that tells you if you’re carrying a boy or a girl (or two girls, in my case), but also the one that tells you for the first time that there could be something seriously wrong, even life-threatening, with your fetus. I know what it’s like to sit in that ultrasound room and get bad news. Like Andy Mayberry, who also has a daughter with spina bifida, I am fortunate that our news wasn’t as bad as it could have been. My daughter and the Mayberry’s daughter have a condition that is treatable and manageable and won’t stand in the way of a full life. Many parents are not so fortunate. For many parents, that moment in the ultrasound room is what turns a wanted pregnancy into a nightmare of heartbreaking news and difficult choices. Placing an abortion ban at that point in a pregnancy leaves these parents without options right when they need them most. It places a legislature between families and their doctors, right when those families most need compassionate care.

I know some will say that the bill has been amended to include exceptions for the health of the mother, for fetal anomalies, and for rape and incest. But as one of my own doctors testified before another committee, when we’re talking criminality for doctors who provide abortions, how much of threat does there have to be before it’s “enough” to justify an abortion? I have a congenital heart defect and a previous severe cardiac pregnancy complication, but no one can say exactly how risky another pregnancy would be for me. My doctors agree that I should not have more children for the sake of my health, but my condition is very very rare, and there isn’t much data on it, let alone actual odds of my survival. Do you think my doctors are willing to risk jail time and the loss of their career and livelihood on my chances of survival? I don’t. And yet I am not willing to risk leaving my girls motherless, and should my IUD fail (as it could, I personally know people who became pregnant with an IUD), I would not think twice before terminating to protect my own life and stay here to care for the girls who need me.

The bill passed the committee despite my testimony. It will probably pass the Senate. The governor will probably sign it. I fear for the state my girls will grow up in, and I fear for their rights and mine.

For every mother who testified that she’s glad she carried her anencephalic baby to term (that’s a baby with no brain and a damaged skull, with no chance of survival outside the womb), there are mothers thankful they had the opportunity for a post-20-week abortion (essentially an induction of labor), to prevent needless suffering for her and her doomed child. For everyone like Andy Mayberry and me, whose kids will have challenges but lead full and happy lives, there are people who got literally fatal news. For everyone like me who survived pre-eclampsia and peri-partum cardiomyopathy, there are people whose fatal complications developed too early to save themselves and their babies, and were forced to deliver to save their own lives, meanwhile their babies could not be saved. For everyone on the other side who calls themselves a compassionate conservative fighting for life, there is someone like me, literally fighting for her own, asking for compassionate choices when we need them most.

If you’re in Arkansas, please start writing to your senators and the governor and urge them not to let this bill pass. Post 20-week abortions are rare because they only happen in the most dire of circumstances. These people deserve compassion.

Awareness

I found out today that October is Spina Bifida Awareness Month. My first thought was: what a crap choice in awareness months. I mean, everyone knows that October is Breast Cancer Awareness Month, as pink has pretty much blanketed everything we see.

But then I thought, well, it’s just as well, since I’m generally skeptical of “awareness” in general. I mean, I’m not usually sure of what it accomplishes. Half of the pink I see this time of the year seems to have no real point, as most of us are aware that breast cancer exists, and the pinkwashing is often unaccompanied by anything about breast exams or early detection or risk factors or anything.

Feeding tiny Claire in the NICU.

I guess people are less aware of the realities of spina bifida. SB is a congenital defect of the “neural tube” which is the part of a fetus that eventually becomes the baby’s head and spine. Claire’s neural tube didn’t close properly, and when she was born, she had 4 centimeters of her spine visible from the outside. As a result of this defect, things like nerves weren’t hooked up properly, so she has/will have certain amounts of disability in her legs, bladder, and bowels, in addition to hydrocephalus, or fluid building up in her head (which for many people with SB requires surgery to place a shunt and drain the fluid, though we haven’t had that yet). While her spinal defect was one of the more severe types, she seems to have good enervation and musculature in her legs, and her doctors and physical therapists believe she will walk and will only need braces to support her ankles, though some people with SB require more extensive bracing or even use wheelchairs.

I certainly didn’t know all of this or really much about SB at all, and it really wasn’t even on my radar until my birthday last year, when we went in for a 20 week ultrasound, excited to finally learn our babies’ sexes, and instead learned that the baby we’d later name Claire had SB. It was a really scary, sad day.

But the thing I needed awareness of that day wasn’t just “spina bifida” as some vague concept. I needed to be aware of the beautiful reality that would be my daughter’s life. Yes, we both had a rocky start. She had surgery at two days old. She was separated from me for 9 days. She was in the NICU for two weeks. She had to stay on her belly for 6 weeks while her back healed. But despite all of that, she’s really just a baby. They’re all very needy. They’re all very fragile. They’re all very tiny. They’re all amazing little creatures. If you looked at my two girls today, you might not be able to guess which one has SB.

If I could go back to last December 16 and make myself aware of anything it would be this: Claire is beautiful. She is funny. She is sweet. She has a radiant smile. She loves to eat. She loves her mama and daddy. She is exploring and learning and growing every single day.

I was so worried about all the ways she’d be different from her able-bodied twin sister, but the reality is, they’re both just babies. They are completely different and yet so very much the same. And almost all of my worrying was completely unnecessary. That is what I needed to be aware of: that there was nothing to be afraid of.

So, no, you likely won’t see NFL teams raising awareness for SB this month, or yellow covering all your favorite products in the name of raising funds. And while you may not personally know anyone affected by SB, now you know a little more about our story, and a little more about my baby Claire, who is special, just like everyone else.

Claire the Bear today.

a birth and near death story

Some folks may be wondering, since my last post over a week and a half ago was OMG ONE DAY TIL BABIES LET’S FINISH THE NURSERY, whether or not I did in fact have those babies.

I did.

And what a crazy story it is.

One last belly shot the morning of the c-section.

Things started out as planned– we didn’t sleep at all the night before from excitement, and we showed up at the hospital at 7:00 am on Wednesday, March 28 (exactly one month before my 40 week due date) for a C-section that had been moved up 5 days because I suddenly had an elevated blood pressure and had started retaining fluid. I was really nervous about the surgery, but despite a little trouble getting the spinal/epidural combo in place (apparently folks with scoliosis and an extra vertebra are a bit challenging for anesthesiologists), the whole operation went very smoothly. It’s super surreal to be lying on a table, numb from the waist down, knowing you’re being cut open and having babies pulled out, but feeling nothing but pressure and tugs and then suddenly hearing cries. I’m pretty sure I was saying “I’m afraid I’m going to feel it!” to the anesthesiologist who was standing next to me as I was already being cut open.

It turns out my girls, who had been in “bunk beds” or in the transverse position for my entire pregnancy, had turned breech somewhere between my last appointment and the surgery– so I’d have definitely needed a C-section even without my blood pressure issue or Claire having spina bifida. Jon joked afterward that there are about 5 ways I could have died in childbirth this week if not for modern medicine– breech twins are one of them. Jokes aside, there is no one more supportive and awesome than my husband, who was right by my side for the whole surgery. The surgical team kept telling him when to pull out his camera for a good photo op, but he mostly focused on supporting me and keeping me calm. He did have the anesthesiologist give me some “goofy juice” at the end when I started to freak out a bit that I might be feeling more than just pressure (pretty sure that was mental), but overall, he kept me relaxed.

Jon and the babies-- Etta in front, Claire in back.

After both girls were pulled out, Etta weighing 6.2 lbs. and Claire weighing 6 lbs. (I am SO FREAKING PROUD of those weights for 35 weeker twins, I must say), Jon went with the babies to the resuscitation area, which sounds scary, but doesn’t necessarily mean the babies are getting like, CPR or anything. They were checked out by a team of neonatologists and pediatricians, and there was a transport team standing by ready to take Claire from the university hospital where I was delivering to the nearby Children’s Hospital (where my husband works), where she would be having surgery to repair the opening on her spine caused by her spina bifida.

It turned out that Claire’s spinal defect was both higher and larger than we initially hoped. I got to see my baby girl in a plastic transport box for about 5 minutes in recovery before she was whisked away by the transport team. I’m pretty sure the “goofy juice” is what helped me not completely freak out over not getting to hold one of my babies, but we had also prepared ourselves for the fact that this is what would happen on delivery day, knowing it would be happening since week 20 of the pregnancy. I was also very thankful to have met and consulted with the team of doctors who would be taking care of her, so I knew she was in the very best of hands.

Meeting and saying goodbye to Claire.

After recovery, Etta and I were moved to the peri-partum ward, and she was allowed to share a room with me. My blood pressure and heart rate were slow to go down, and labs revealed my blood counts were very low, so on Thursday I received a blood transfusion. Everyone who came in the room and saw me afterward remarked on how much better I looked, and the color in my face, even though I was about the same shade as the beige hospital blanket that covered me. I guess I was white as the sheets before?

On Friday, Claire had her surgery, a five hour process involving neuro- and plastic surgeons to cover the 4 cm. area where you could literally see her spine. I wished so desperately that I could be there for her, but was still not in shape to be discharged from the hospital, so a social worker set up a video-conference and I got to video chat with her before the operation. She opened her eyes when she heard my voice, which made me feel so much better that she still knew her mama loved her. She came through the surgery great, and continues to recover in the NICU at Children’s. She seems to move her legs of her own accord and also to respond to stimuli, which are great signs that she may not have disability in her legs. As with everything, though, we will just have to wait and see. She may also have disability in her bladder and bowel functions, but since no babies have bladder and bowel control at this point, we won’t know until she’s older if this is the case. We certainly hope it isn’t.

On Saturday, there was talk of discharging me from the hospital as I was doing much better, but I was still feeling very very weak and not very able to get out of bed, and when my doctor suggested keeping me another day, I said I thought that was a good idea. I needed the time to continue to recuperate.

By early Sunday morning, I was feeling well enough to get out of bed and walk unassisted the 5 steps to the bathroom, as Jon was holding Etta. I remember feeling so proud as I stood up and walked unassisted, thinking this was finally the milestone I needed to get to go home. As I walked back to the bed, I felt myself getting shorter and shorter of breath. I told Jon I was having trouble breathing, and he called for the nurse. It just got worse and worse, as I struggled for breath in short gasps, and a crowd of nurses gathered around. People were telling me to take a deep breath, but short gasps were all I could manage. I began to hear crackling in my lungs (Jon later explained that this was flash pulmonary edema), and I became more and more panicked. I knew from the way I felt and the look on Jon’s face that I was crashing.

The Rapid Response team arrived and soon I was being prodded and various breathing masks were being shoved onto my face, which only increased my feeling of panic. I know enough from being raised by medical professionals and married to an emergency physician that I needed to be intubated. I was looking at Jon begging him with my eyes to get someone to sedate and intubate me so I wouldn’t have to panic and struggle to breathe any more. From the look on his face, I could tell if he’d had a cart nearby, he would have done it himself.  I truly believed I was dying, lying in that bed, surrounded by people bustling around to save me, with my husband watching and my baby girl lying next to me in a bassinet.

And then I don’t remember anything.

My next memory is vague, like a dream, where you know there is something you MUST do, and in this dream, what I had to do was pull something out of my mouth. So I just kept pulling.

It was Monday morning, and I had extubated myself. I was in the ICU, where I had spent about 24 hours on a ventilator.

After consults with cardiologists and pulmonologists and internal medicine specialists and more doctors than I can count, it seems I have developed peri-partum cardiomyopathy, which was causing congestive heart failure. My terribly lay understanding is that possibly due to the stress of the pregnancy on my body, I either developed or finally exhibited a pre-existing weakness in the muscle of my heart, specifically in the last chamber (left ventricle) that sends blood out into the body. The ability of this chamber to pump out blood effectively is measured in an “ejection fraction.” Most people’s is 50% or better, and mine was 15%.

Reunited with Etta in the peri-partum ward after getting out of the ICU. I may look yellow, but this is "good" color compared to where I was.

Putting me on the ventilator helped them pump fluid out of my body to take the load off my heart and lungs. They removed 7 liters of fluid from my body in my 24 hours in the ICU, and continued to take more off through diuretics and fluid restrictions after they got me out of the unit and back in the peri-partum ward.

Tuesday through Thursday were spent trying to fine-tune the cocktail of medicines I am now on to control my heart rate and blood pressure and allow my heart to strengthen and heal. Every day they tweaked the meds a bit, and every day I worked harder to get out of bed and walk and move. By Wednesday night, I finally was able to make half a lap around the ward, pushing Etta in a bassinet, Jon beside me to steady me, with nurses cheering– even those who hadn’t cared for me had heard about the girl who was seemingly ready to go home and had suddenly crashed and wound up in the ICU on a vent, so they were proud to see me looking better.

Etta and me.
Claire and her daddy.

At first, the medicines made me feel worse, which my cardiologist told me would happen. I’d get my meds, and then for 4 hours afterward, feel hot flashes and jitters and general exhaustion, only able to sweat and sleep. But every day that got a little better. By Thursday, Jon and me, and Etta, if I may speak for her, were just DONE being in the hospital. Convinced that I would be compliant with my meds, diligent in home blood pressure checks, and sure to come back for follow-up treatment, I was finally discharged. I have never been so glad to breathe fresh air as when baby Etta and I were wheeled out to the curb in front of the hospital on that beautiful spring day when we finally got to go home. I’m feeling better and better since then. My heart condition may never be fully cured, but it can get a LOT better, and I have high hopes of being one of the successful cases. We will not be able to have any future pregnancies, however, because it would literally mean risking my life.

Another loss that I feel very deeply is the loss of the ability to breastfeed the babies. I had really hoped to be able to nurse them, and had been working on nursing Etta and pumping and building up my supply while in the hospital, however, after the whole almost-dying thing, my doctors convinced me that breastfeeding is a major physical strain on my body, and I needed to be conserving my physical resources to give my heart the best chance to heal, so that I could become strong enough to care for my girls. I have cried many tears over this loss, but I know that we made the right choice for our family. They need my beating heart a lot more than they need breast milk.

We’re still missing 1/4 of our family, with Claire still in the NICU, and we are anxious to get her home. I’m still pretty weak, though stronger every day, and my one outing a day is to go visit her. Blessedly, Children’s has a special “twin rule” that lets us bring Etta with us to visit her sister, and it’s super special just to have the four of us together for a little bit each day– giving us a taste of how great it will be to finally have all of us home. We don’t have a specific date that she’ll be discharged, but we hope it could be soon if she keeps meeting the goals her doctors set for her. Every day that I’m wheeled out of that NICU with only one baby feels incomplete.

Seeing Claire for the first time since her birthday after I got out of the hospital. It had been over 8 days since I saw my baby.
Reunited twins!

Overall, though, I am so very thankful. I’m glad I was in the hospital where I could quickly get the care I needed when I crashed. I’m glad Claire has such awesome people taking care of her, and glad we have awesome families who would come and take care of her and Jon and Etta and me when we needed them. I’m thankful for two beautiful baby girls. I’m thankful to be alive.

The whole family.

our babies have a birthday!

Just a quick update on Etta and Claire: they’re not even born yet, but they have a birthday!

I saw my OB this morning for my now weekly monitoring, and the babies and I look great. She had spoken to the Maternal Fetal Medicine team about our last ultrasound, and they decided that to be on the safe side, we should plan to have the babies at 36 weeks.

So…..April 2 is BABY DAY! It’s completely surreal to think we’ll just go to the hospital, have a c-section, and have babies in our arms by lunchtime.

I feel it is an auspicious date because April 2, 2006 is the day Jon asked me to marry him. Now that happy day gets exponentially happier!