The Scorpion Tale of Perinatal Mood Disorders


Last night, I had a rather in-depth discussion with Addye over at Butterfly Confessions. We’ve discussed the same topic before and we’re finally doing something about it because we both think there’s not enough out there about this subject. Her blog post went up last night, discussing the role her antenatal depression, postpartum mood disorders, and other mental health struggles have played in her son’s recent diagnosis of being on the autism spectrum. While our children’s diagnoses are different, our story is the same, and it begins with a long hard look at the stinging guilt with which we now carry along our paths of Motherhood.

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It’s taboo, really, more so than admitting you struggled with a Postpartum Mood Disorder. It’s a secret locked in a trunk hidden in a house deep in the woods where no one will find it. It’s the poison-tipped tail of a scorpion, the thing that gets you after the initial reaction of having a scorpion land in front of you. It’s the nagging feeling you get in your throat every damn time you look at your kid and think, even for a brief second, that you did that to them. It’s YOUR fault.

I’ve been there. I still am, sometimes. Not as much as before, but it’s something that I will always carry with me. A small part of my heart will always be tinged with guilt and a depth of sadness I’ll never shake. I’ve learned to accept it instead of fight it, to give it space to just breathe, knowing I’ll never get rid of it as long as I live. Right next to it though, now, is a space that is filled with a peace I’ve worked very hard to achieve – a peace that cancels out that guilt and sadness…as long as the see-saw is working that day, that is.

I struggled with Postpartum OCD after the birth of my first daughter. I’ve made no secret of that. I sought help but was shot down by my OB, an integral part of this story. I had to fight on my own to heal. Looking back, I didn’t do a great job at healing. What I excelled at was shoving all of the darkness down and faking it until I felt like I made it. Only by the time I got there, I was pregnant again and my hormones became the scorpion.

They flowed into my pregnancy, along with severe morning sickness. There were days I had to choose between eating or my prenatal vitamin. I often chose eating because I knew the vitamin would make me vomit whereas I might be able to keep the food down. One day, I lived on just one powdered donut. Other days, less. I couldn’t tolerate food for almost four months, if memory serves correctly.

I remember thinking I didn’t need the prenatal vitamin. I’d be okay, baby would be fine. Or so my hormone rattled brain said so. I didn’t want to get up, I would lay on the couch as our oldest, just a little under a year and a half, begged me to play with her. I couldn’t move or I’d vomit. So she learned to play by herself.

The pregnancy progressed, everything seemed fine, I didn’t have Gestational Diabetes again, the baby measured fine, all was good.

Until my baby shower. I went into labor that evening. I was 35wks and 6 days pregnant. (Women with untreated antenatal depression are more likely to go into labor early….or so says the research). At the time, I didn’t relate the two. I just knew I wasn’t full term and contracting. I labored at home until the next morning when we finally saw the doctor. I was dilated enough for them to send me to the hospital. Baby was on her way. Instead of happy, I was nervous. What was wrong? Why was she coming early? We were close enough to full term, really, less than a week away. But still, she was early.

After 42 hours of grueling labor, my daughter was born. She looked perfect. 10 fingers. 10 toes, screaming, a perfect squishable pink human all mine. I made her. As I tried to latch her to nurse, she wouldn’t latch. Just kept screaming. I didn’t know why. I tried for 30 minutes. Then we called the Lactation Consultant. I knew what I was doing, damn it, I had nursed our first for 16 months. Why wouldn’t she latch?

The Lactation Consultant swept her mouth as soon as she got to our room.

That’s when shit got real.

My darling perfect little squishable baby was rushed away from me, the word “cleft palate” left hanging in the air.

There I lay, in a hospital room, epidural still wearing off, all alone, no staff, no husband, nothing to show for almost 2 full days of labor except for the echoing of my heart shattering, insidious voices flooding my head with the phrase, “It’s your fault.”

I did that to her. She grew inside of me, imperfectly.

I lost it that night, brushed my hair for 10 minutes in front of the mirror. Ugly cried on the phone a lot that week, so much so that my ex-husband couldn’t even understand me at several points. In front of nurses. I cried a LOT. This? Wasn’t the way things were supposed to go. Why had I failed?

She was in the NICU for 21 days, undergoing one major surgery for her jaw at just 9 days old. Seeing your 9 day old infant on apparatus breathing FOR her… yeah.. um… yeah. “I did that to her.”

The kicker? The geneticist at the hospital asked me if I took my prenatal vitamins. I lied. I didn’t need any more guilt. I really didn’t. In my fog, I failed a lot.

People told us if we made it through the first year….we’d be scot-free.

They lied.

She’s seven now. Is one of the bubbliest personalities you could ever hope to meet. She’s perfect in every possible way. But she’s struggled so much and her struggles are far from over. Because of me.

She fights for every word she says. It could be worse, I tell myself. She could have so many other issues kids with her same condition have – texture issues, an additional syndrome, etc. Aside from her Pierre Robin Sequence at birth, she’s fine. She has speech therapy, and has had additional surgeries to help with her speech. Before she was 2, she’d been through three times as many surgeries as I have in my entire life.

I did that to her.

What if I’d taken my prenatals? Would she have been born this way? What if I’d fought harder for myself in seeking help for my depression after the birth of her sister?

Intellectually, I KNOW it’s not my fault. But still, the sting is there, long after the scorpion has faded out of sight.

It’s there, just a tinge of it, every time we talk. Every time I have to decipher what she’s said to me based on the context of the words I am able to understand because I still can’t understand every single thing she says. I recently won $200 headphones. They help me immensely in understanding her when we Skype. The ear-buds I had before just weren’t high enough quality to do so. Even now, I have to make her slow down and repeat what she’s said because she’s seven and well, seven year olds get excited.

She will need a lot of orthodontic work. She has the risk of giving birth to a child with similar issues. Kids will tease her because of the way she talks. She was born a fighter without having a say in the matter. While I know this will serve her well later in life, it is something with which I struggle.

Some mothers have Postpartum Depression, Anxiety, PTSD, etc, and they heal, with no adverse affect on their children. But there are those out there who experience issues with their children. And because of what we’ve been through, we draw that line from point PPD to point whatever Alphabet Soup DX with our kids. There’s research to back most of it up. There isn’t research (that I’ve found) to back up PPD related to cleft palate but a “Friend” of mine once tried to draw a line to the type of med I may have taken to my daughter’s cleft palate. Punch.IN.THE.GUT.

Moms like me need a gentle hand. We need to be heard, not dismissed. We don’t need to hear that “It’s not your fault” because in our heads? It is. It always will be no matter how much you tell us that it’s not. It just will be. We need you to stand with us, to be there when we need to scream, cry, vent, and shake our fists at the sky. To understand that our truth is a hard truth and sometimes it will break us but we will rebuild, a constant practice in our lives shattered by this spike of unexpected blow-back from our already complex, shame, and stigma-riddled experiences.

We are women made of glass. Under that glass, yes, we are steel, because we have to be, but on the outside, we are glass and we shatter. We need you to be someone who lets us shatter, someone who helps put us back together and take another step forward as we walk toward processing our new truth.

It’s time for us to come out of the darkness and speak up, to be honest about the role we feel we played in the issues affecting our kids, and to find support, REAL support, not dismissive attitudes, in our search for the light both we and our children need to thrive. We seek out the research drawing the lines from Mom to our kid’s issues, whatever they may be. Sometimes, the line tracing back to Mom is real, worth exploring, and worth understanding. Without it, we’re just left wondering why. I, for one, don’t like hanging out in the middle of nowhere with no answers.

Any answer, even a horrible one, is better than no answer at all.

It’s something. A direction in which we can begin to move forward from, a new beginning from which we can start to walk toward solace. Even if we never reach it, walking toward it is often enough. It has to be, right?

 

 

 

Confessions of a Cleft Palate Mama


As an active blogger and Social Media participant, I choose to live my life out loud. In choosing to live my life in this manner, I open myself and my life up for comments and questions. Sometimes, these comments and questions hurt. Sometimes they are meant to cut. Other times, they are not meant to hurt but are instead posed with the best of intentions. The latter often catch me off guard. Such a situation occurred this past week. Instead of dashing off a quick and angry response, I called a friend and nearly ended up in tears as I described the situation to him. I let it sit over night as I thought about the best way to respond. Then I took to Twitter to vent about the situation. Once I took to Twitter, I realized I was not alone in my very justified reaction to the inquiry. Instead of a private response, I choose to handle this in a public manner. There are many other mothers of children with birth defects in this world and all of us battle the same thing deep down inside. All of us are consumed by guilt.

The birth of my second daughter at 35 weeks and 5 days occurred 42 hours after my first contraction. I pushed twice and her screams filled the air of the delivery room instantly as she emerged into my nurse’s waiting arms. Placed on my chest, she continued to scream and writhe about as most newborns do. At first glance, she appeared healthy. All fingers, all toes, you know, the important stuff. When she screamed however, her mouth gaped at the top where her palate should have been. I blinked and tried to check but blamed it on exhaustion. I tried to latch her onto my breast to nurse but it didn’t work. After several tries, on and off, her screaming, me almost in tears, we requested the Lactation Consultant.

The Lactation consultant came in, slipped on gloves, and swiped our 30 minute old daughter’s mouth. “She’s got a cleft.” A swarm of activity buzzed about our room and suddenly there I was, alone, in bed, freshly delivered and still numb from the epidural. No one to talk to, no one to explain to me what was going on. The thoughts started. I knew of a cleft. I knew it meant something was missing. But I didn’t know the cause. I didn’t know why. Then I thought. I thought some more. What had I done wrong?

Early in my pregnancy, I was unable to take prenatal vitamins because they induced severe nausea. Forced to choose between taking the vitamins or not eating, I chose to not take the vitamins. I even tried taking them at night but it was a no go. My depression from the birth of our first daughter also played into the decision to not discuss this nausea at length with my OB. Nausea continued well into the 6th month of my pregnancies. By the 6th month, though, I still was not taking my prenatals. In my depression delusional mind, I even wondered if it would truly affect my growing child’s well-being.

At six months pregnant, however, even if I HAD taken my prenatals, it wouldn’t have mattered. Most clefts form between 4-6 weeks, well before a woman is even aware of her pregnancy. Many clefts are even impossible to link to a specific cause. Our daughter’s specific cleft, a bilateral complete cleft of both hard and soft palate (meaning essentially, she had NO PALATE whatsover), was associated with a condition called Pierre Robin Sequence (pronounced Pea-air Roh-ban). Her jaw was also recessed, her tiny tongue was floppy, and her airway was narrow. In the 1920’s, PRS babies had a slim chance of survival. Today, however, the rate of survival is very high and surgery is available to correct these issues.

I was asked, several times, by several doctors, if I had taken my prenatal vitamins. I lied. Yes, I know I shouldn’t have lied. I should have been honest. But between depression, PTSD, and the guilt now whirring around in my head, rational behaviour escaped me. My partner didn’t even know I hadn’t taken my prenatals until I confessed while in labor with our son. (Hell of a time to confess, huh?)

Bottom line: I BLAMED MYSELF FOR MY DAUGHTER’S CLEFT.

Yes, rationally I know now I am not to blame. There is no family history of cleft. No associated genetic syndrome along with her PRS. It formed well before I could have done anything about it and even Mothers who take folic acid religiously still have a risk of giving birth to a child with a cleft. I know clefts are nearly impossible to see on a standard u/s unless you are looking for them specifically. Intellectually, rationally, I know all of this. and yet, the guilt consumes me. She grew inside me. She grew imperfectly. Logically I am to blame. If she is imperfect, there is something wrong with me. I failed my daughter before she was even born. I failed at motherhood a second time before I even held her. I FAILED.

Mothers of children with birth defects, with special needs know what I am talking about. We feel this every day. We fight like hell to not let this guilt eat at us. We fight against stigma, misinformation, judgment, and ignorance. We live with the stares, with the internal guilt which threatens to rip us apart every second of the day. We ferociously fight for our children so they may have a chance to live a normal life. A life of which they are completely worthy.

My daughter is nearly 6 years old now. She is beautiful. She is intelligent. She is determined, obstinate, and full of perseverance. She is happy. She is thriving. She is PERFECT. She is LOVED.

It doesn’t matter what I did or didn’t do all those years ago. I cannot go back in time to change anything which happened. Even if I could, I would not want to go back in time to do so. Because if I did, I wouldn’t have a daughter who has taught me more than anyone else in my life about the importance of hanging in there, fighting for even the simplest things (like speech, breathing, and eating), or that the most important thing in life is to be happy and keep others laughing right along with you.

Milestones


This year has been a year full of milestones for our four year old daughter.

She blew out the candles on her birthday cake for the very first time. She belly laughed for the first time. She is thriving in an all-day pre-k full of absolutely normal kids her age. We understand almost 99% of her speech these days. Life is good.

Today, a milestone happened for us in the car.

When I walked in to pick her up from pre-k, she grinned widely, jumped up, and ran over to hug me.

The last time I picked her up? Tears. Total meltdown. Temper tantrum complete with thrashing in the floor. She is accustomed to her father picking her up and had not been informed about the change. She was NOT happy. Today she was happy to see me. We started last night to explain to her that Mommy would be picking her up from school to take her to a doctor’s appointment.

I had a snack waiting in the car. Once strapped in, I got her settled with her snack, got the tunes going, and off we went.

Halfway across town, as she snacked and I chowed down on Peanut M&M’s, a favorite song of hers came on Pandora.

I turned it up, she squealed, and we sang as loud as we could together.

Then, it hit me.

We?

Were a mother and daughter rocking it out in the car.

Just an average, everyday Mom & daughter totally grooving together.

I had to stop singing because I started crying. Furiously blinking back tears so she wouldn’t see me and swallowing my tears so I could sing with her again, relishing the normalcy of the moment.

My four year old and I did not bond when she was born. She was born with a condition known as Pierre Robin Sequence. At just 9 days old, she had major surgery and was in an induced coma for a week as the swelling went down from her surgery.

When she was 56 days old, I was hospitalized.

When she was 7 months old, I stopped exclusively pumping and stopped resenting her for all the issues she brought into my life.

When she was 3 years old, she had to have another surgery and I was forced to return to the same hospital she was at for her NICU stay. We bonded that week, the two of us, and have been growing closer ever since.

But today? Today was really the first time I felt that miraculous mother/daughter bond with my daughter.

I cried not only because it had finally happened but because it took nearly five years to happen.

You know what though?

TOTALLY worth the wait.

Prematurity Awareness Day: Remembering to Breathe


2 AM and she calls me ’cause I’m still awake

~Anna Nalick, Breathe~

I couldn’t sleep. It was time to pump again. If I did not pump, I stood to lose the precious supply of breastmilk I struggled to establish. Every three hours I hooked myself up to a yellow hospital grade Medela pump. The plastic horns were cold. Hard. Definitely not the warm natural manner in which I expected to be providing milk to my new baby girl. Never-mind she was in Atlanta about an hour away.

I sat on the couch, in the dark, hooked up to a whirring machine via tubes. 70+ miles away, my daughter was doing the same thing, hooked up to machines, whirring and straining to keep her alive.

‘Cause you can’t jump the track, we’re like cars on a cable
And life’s like an hourglass, glued to the table
No one can find the rewind button, girl.
So cradle your head in your hands
And breathe… just breathe,
Oh breathe, just breathe

~Anna Nalick, Breathe~

She was a little over 4 weeks early, my second daughter. A late-term preemie but a preemie none the less.

We had no idea she had a cleft palate. Or a recessed jaw. Or a compromised airway. Or a floppy tongue.

No idea she would be in an ambulance less than 24 hours after birth heading toward a NICU in the nearest large city.

No idea we were about to get a crash course in medically fragile infant care.

No idea of the plan to take our lives and turn everything completely upside down.

The plan was to have a baby. Go to the hospital, give birth to a healthy baby, nurse, go home.

Our plan failed. I failed. I wailed. I cleaned. I screamed. I cried. I wanted to leave her at the hospital. She was not mine. The hospital had made a mistake. They could keep her. I could not do this. I couldn’t. I just… I…. I was delusional. In shock. Processing but yet…. not.

Detached. Clinging to a series of routines. Clean, brush, wash, change, pump, meds, yell, scream, argue, repeat.

Stuck at home.

What I wouldn’t have given to have had her stay inside for a few more weeks.

To have known before we had her of the issues we would face.

But we did not.

I do not know if knowing would have changed a damn thing. I think it would have sometimes. But then I realize I cannot change what has been. Only what will be.

There’s a light at each end of this tunnel,
You shout ’cause you’re just as far in as you’ll ever be out
And these mistakes you’ve made, you’ll just make them again
If you only try turning around.

~Anna Nalick, Breathe~

The day we were to learn how to place an NG tube, I sprained my ankle as I got up from pumping on the couch. My husband freaked out along with me. Then I instructed him to bring me an ankle brace and ace bandage, bag up some ibuprofen and tylenol, and grab an ice pack. There was a grown up hospital across from Children’s. If things got worse, I would go, I promised. I never went. The nurses asked why I was limping. When I told them, they chided me. I did not care. I had limped around since arrival. 42 hours of labor wracked my body. I had the shakes, fever, signs of trauma. I kept going. I burned and re-tore. I should have slowed down. Rested. But I could not. My daughter needed me so I threw myself gleefully under the bus, a Cindy Crawford Pepsi ad smile glued to my face.

Why?

Because this is what a Mother does. Right? Right?

Everyone told us just get through the first year. The first year is the worst.

What they didn’t mention was the follow up appointments. The speech therapy. The potential for behavioral disorders. Allergies. Orthodontia. Additional surgeries. Ear Tubes. Feeding Tubes. Depression. Developmental delays. Hell.

They also did not mention the joy we would feel when our daughter, at four years old, finally blew out candles on her birthday cake all by herself. I cried.

Or the joy when she finally started talking and could TELL us in her voice instead of with her hands how much she loved us.

Or how much joy would spread across her face as she blew up a balloon after surgery #6 which created a pharyngeal flap to close off excess nasal emission of air previously preventing her from blowing up a balloon.

Or her giggles when she first blew bubbles.

Or how big we would grin as we listened to her teach her 2 year old brother talk.

How good it would feel to as she finally made progress.

How good it would feel to understand 80-95% of her speech instead of 25-50% of her speech.

How good it felt as we both recovered from depression and felt the sun’s warmth on our faces and in our hearts.

How grateful we would eventually be to God for carrying us through such a huge storm.

2 AM and I’m still awake, writing a song
If I get it all down on paper, it’s no longer inside of me,
Threatening the life it belongs to
And I feel like I’m naked in front of the crowd
Cause these words are my diary, screaming out loud
And I know that you’ll use them, however you want to

~Anna Nalick, Breathe~

When I became pregnant with her brother, I began to blog here. Not so much for others at first, but for me. I needed the support. I needed to vent. I needed to know I was not alone. Writing became a solace for me.

I know I am not alone.

You are not alone.

We are together.

There are thousands of us scattered across the world, just as scared as the next one. But we are not alone. We are not alone.

But you can’t jump the track, we’re like cars on a cable,
And life’s like an hourglass, glued to the table
No one can find the rewind button now
Sing it if you understand.
and breathe, just breathe
woah breathe, just breathe,
Oh breathe, just breathe,
Oh breathe, just breathe.

~Anna Nalick, Breathe~

Today I breathe. In. Out. Just as before.

But everything around me, in me,  has changed.

I have changed. For the better, I think.

Today I am stronger. I am braver. I am not stuck in that moment. I move forward. Not because I have to but because I want to do so. Because I choose to do so.

I am far from perfect. Far from June Cleaver.

I am me. Unapologetically me and unapologetically me as a mom. I do not worry about what I am doing right or wrong according to others. I don’t worry about what she says or she says or she says. What she says does not matter. All that matters is if my daughter has laughed with me today. Has she felt loved? Has she been hugged? Is she warm? Clothed? Fed?

Our house is a wreck. My kids watch TV. My kids eat junk food occasionally. I do too. We are imperfectly perfectly us.

And for that?

I am grateful.

So I breathe. I exhale. I move forward as an empowered unapologetically me.

The day I gave birth to my daughter four and a half weeks early was the same day I gave birth to a stronger me.

It just took me nearly five years to really figure that part out.

(This post is part of the March of Dimes Blogger’s Unite to Fight for Preemies event. You can learn more about Prematurity Awareness at the March of Dimes website.)

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Whatever Wednesday: Anatomy of a Laugh


Most new mothers will tell you about the first time their child laughed. Not giggled, not chuckled, but laughed from the depths of their very souls – a belly laugh jiggling on up just like that of Jolly Old Saint Nick. And they’ll do it with a grin full of reminiscent whimsy on their faces. Today it’s my turn.

Much of our second daughter’s life is composed of celebrating simple milestones on a delayed schedule. But it’s okay because this is our normal. We embrace this, celebrating each new achievement as they come. The bonus to the delay is that many of these milestones we get to really share with her which makes it even more special.

When she blew up a balloon for the first time – we were beside ourselves. When she blew out the candles on her own this past year as she turned four, I had to leave the room because I had tears threatening to break the dam of my perma-happy mama face. A little composition and I rejoined the party, laughing and downing cake with the best of them.

This past week, Charlotte developed an annoying habit. She over-laughs at everything. When I say over-laugh, I mean, over-laugh. Think a Seinfeld laugh track on speed and pumped up a zillion times past the highest volume of which your ears are capable. And she now over-laughs at the most inopportune moments at things which are not even funny. Now, Charlotte is a jokester. Her goal in life (and she’ll tell you this) is to make everyone laugh and smile. All.the.time! She is just not happy unless you are smiling, giggling, or tickling her. Then a glint in her eye sparkles and all is right in her little world. Course, snatching toys from her little brother (like she is no doubt doing right now because he is screaming) also makes her happy. We’re working on that one.

As many of my regular readers know, we have struggled with Charlotte’s speech development due to her cleft palate. She has greatly improved but we are still on an upward hill toward improving her speech. One of the sounds we struggle with are the “glottals.” Now for those of you who haven’t earned an unofficial Ph.D in speech therapy, I want you to put your hand on your throat and make a “guh guh guh” sound. Your “adams apple” should move and you should feel the sound vibrate at the very back of your throat. That is a glottal. Because of Charlotte’s cleft, she learned how to make several sounds by slamming her vocal cords shut instead of using her pharyngeal flap which is what helps make the glottal sound. It’s TOUGH to unlearn something your body has naturally adjusted to doing – it’d be a bit like learning how to walk all over again.

In researching for this post (I know, it’s a Whatever Wednesday. I’m supposed to ditch the research. But I like research), I tweeted Dr. Greene to ask him when a baby normally laughs first, making it clear I was asking about belly laughs. According to Dr. Greene (in 140 chars or less so be nice), “A: First laugh varies a lot. Some do by 2 mo. Most at least giggle by 3 mo. Evaluate if no belly laugh by 9 mo” Charlotte has always laughed. She was a happy baby. But her laugh was high-pitched as happens with most cleft babies as they lack the muscle control to make deep glottal sounds. Many cleft babies must learn how to make their glottal sounds later in life.

As the week progressed, Charlotte’s laugh slammed into me much like a mad seal barking at an intruder. Then last night I had an epiphany.

Charlotte, through her mad seal barking, has been practicing her glottals.

And by George, she’s really and truly BELLY LAUGHING.

For the FIRST.TIME.EVER.

Do you hear me?

My baby, at FOUR YEARS OLD, is finally belly laughing.

What a sweet, wonderful moment when the belly laughter comes!” Dr. Greene commented in response to why I needed the research.

Yes indeed. A Sweet, WONDERFUL, and AMAZING Moment.

Belly Laugh away, sweet Charlotte.

I promise if I ask you to stop it will be with love, gratefulness, and a warm heart.

And because Mommy has a headache and is fresh out of Excedrin.