Tag Archives: cleft palate

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

[youtube=http://www.youtube.com/watch?v=jPz3YaIJkjQ&fs=1&hl=en_US&rel=0]

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.

The importance of seizing teachable moments

Today, Janis over at Sneak a Peek at Me blogged about Teaching your Children about Differences. Sadly, this post is rooted in an experience she and her son were affected by today. During a trip to a local zoo, several children stopped and stared at her son. Their parents did not seize this opportunity to teach their children about differences. So she’s blogging about it to bring attention to this serious issue.

I agree with her.

As the mother of a special needs child, I have had to field questions about my own daughter. But my daughter’s issues are not clearly visible to those around us. So the challenges I face are different. It’s when my daughter speaks that we get questions. You see, she was born with a cleft palate, recessed jaw, and a floppy tongue (glossotopsis). This is officially known as Pierre Robin Sequence in her case because there are no other genetic syndromes along with her diagnosis. She’s had six surgeries, the first one at just 9 days old, the most recent one just over a year ago.

Her speech, while improved, is far from the normal expected speech. We have to constantly remind her to speak slowly. To enunciate. And yes, my four-year old KNOWS what the word enunciate means. And I know way more about speech therapy than I ever imagined I would when I started down Parenting Lane.

Our daughter tries her best. She does get frustrated because she’s terribly bright but more often than not, her ability to use her voice and words gets in the way of what she wants to share with us. She gets worn out and doesn’t want to try. Sometimes it’s hard for us to understand her. And sometimes it’s hard for others to understand her. She worries about being teased. And it happens. Someone asks her a question, they can’t understand the response, and voila. We get a question.

While it’s not the same as Janis’ situation, I understand the basic emotions. Immediately I worry they won’t understand or that they’ll make fun of her. The only place I’ve had to field an insensitive comment about her condition has been from a fellow kid in her special needs pre-k class. And I answered it appropriately. I seized it as a teachable moment by explaining to this child that issues with speech were what Charlotte needed help with because of the way she was born. But that she was trying her hardest at making her speech better each and every day. The child nodded and went back to his coloring. Charlotte shot me a grin (she had overheard the child’s question) and went back to her coloring as well.

It is important to us Charlotte understand how she was born. That she know we are not ashamed of it and she can do whatever she wants to do with her life. We celebrate the smallest of achievements – like this year – on her fourth birthday? She blew out the candles all by herself for the first time EVER. The first time she blew up a balloon? Squeals! Bubbles? Lots of squeals!

She did not start talking until she was nearly two years old, maybe even older. We talk with her a lot about her speech and why she has problems with it. She openly shares with us when she’s frustrated with it and we work to heal those frustrations together. She’ll be starting a regular pre-k program later this summer and is very worried about other kids making fun of her. I’ve been making sure to sit down with her to talk about her options if that happens. She’s getting very good at asking questions and opening up with us about her worries and concerns. I’m happy to see this development because it means I’ve done my job right in being open with her about what’s going on in her life. I know there are more battles down the road. Right now though, I’m building the base of a very strong building for my daughter. I want her to stand tall no matter what comes her way. I want her to know she’s perfectly okay the way she is because GOD made her that way. That we love her no matter what.

And if we see someone different out in public and one of the kids say something, we are down at their level immediately, explaining to them that GOD makes everyone different, that some of us may need extra help but that’s okay. We tell them we should love everyone the same, be polite to everyone, and that pointing and staring is not okay. We tell them that people who are different are still people and want to be treated with the same compassion, respect, and dignity as everyone else. So far the kids are doing great with this. I hope this is a lesson they carry with them for life and infuse into their own children’s lives. Because acceptance and compassion are half the battle in being the bigger person.

Graham Crackers & Peanut Butter with a side order of crazy: Part II

Welcome to Part II. Today I’m sharing how I ended up in Part I. Tomorrow we’ll be at the doc’s office and then the ER. Read that section here.

Our daughter was 56 days old. She had spent just 15 days more at home than in the NICU at that point, having been born with a cleft palate, micrognathia, and glossotopsis. This is known as Pierre Robin Sequence. By the time we got her home, she had endured major surgery, been in a medically induced coma for a week, and had a feeding tube placed. More surgeries would be necessary to close the cleft of both her soft and hard palate. The cleft was complete and bilateral, meaning there was NOTHING up there but a gaping hole.

The day of her jaw surgery, I checked out. Curled up in the sleep room with Linkin Park’s Remix album and wanted to sink deep down into the chair. It was dark there. And safe. Oh so safe.

I cried, no, bawled, my body wracked with tears that I had muscle aches the next day. I wanted to leave her at the hospital. How the hell could this have happened to us? Why us? What the hell was He thinking? I pushed her away from the very beginning. Her cleft destroyed all of my expectations. Birth, breastfeed, go home. All of this in between NICU crap wasn’t in the plans. Formula wasn’t in the plan. abandonment just 30 minutes after a 2 day active labor wasn’t in the plans. My new daughter going to Atlanta without us at less than 24 hours old – SO not in the plans. My mom picking me up at the hospital – not in the plans. Our 23 month old daughter’s life being turned upside down – I felt guilty.

I didn’t take my pre-natal vitamins. Clefts can be a result of poor maternal diet, folic acid specifically. I had severe nausea and wasn’t able to eat most days. SO I didn’t take my vitamins. Ever. Looking back, depression flecked the entire pregnancy. And now this? I would have fared better in a ring with Mike Tyson.

No one told us anything. My mom did research. She got me in touch with an online PRS support group (Thank YOU, Nancy, for all you do to keep us connected.)

The NICU doctors and nurses were great.

I wasn’t.

The night of her birth, I woke up at 10pm to pee. I stood there and brushed my hair for 10 minutes. I didn’t see myself in the mirror. What I saw was a shell. I willed a spark to appear – but none did. Eventually I gave up and went back to bed, lying there, confused, exhausted, worried – slipping in and out of sleep only because physically I needed to collapse into bed!

The next day I yelled at our nurse when she tried to get us to sign consent forms for C to go to Atlanta. But she wasn’t supposed to go until later in the week. What do you mean this AFTERNOON? Where are you taking my baby? Why are we.. you can’t take her. You just can’t. you.just.can’t.

More hustle and bustle. In and out. Charlotte seems to spend the entire day away from me. I spend the entire day away from her. But at one point, I am in the bathroom and she’s in her bassinet in the room. I hear a door open. A man walks in and I freak out. He prays with me and leaves. I’m scared and go to the desk to ask that no one be allowed in the room unless they are on a list I’ve scribbled up. On the list are our parents. No one else, no one else. I am not in the mood for random strangers to stop by. (I think he went to our church)

By that afternoon, we meet the transport team. They seem nice enough. Chris has bought a little lamb to ride in the incubator looking rig with her. She’s healthy, they tell us. Oxygen sats are good, breathing is good, she’s healthy. She’ll be fine. We’ll meet your husband there. We sign the first of a slew of paperwork.

Chris hangs out with me after she leaves and eventually he has to leave too.

I pace in the hospital room when I am alone. Pace, pump, clean, pace, pump, clean.

I am a caged animal blaming myself for my daughter’s issues. I caused this by not taking my prenatal vitamins. This hell is all my fault. I did this to my poor baby girl.

Later that evening, my in-laws swing by with On the Border and my daughter. They stay for a few minutes. It’s painfully uncomfortable, perhaps a misconception on my part. After they leave, I voraciously eat my now cold food as I watch Nothing to Lose, my go to happy movie. It doesn’t work.

By now, Chris is in Atlanta. I call him around 10pm and cry so hard he can’t understand a damned word I’m saying. We hang up and I wail myself to sleep. If I had given birth via c-section, I am sure I would have torn stitches. Again, I wake up to pee in the middle of the night. Again, I stand and brush my hair. But this time I straighten up the already immaculate room as well before going back to bed.

The following morning, one of the OB’s from the practice offers me Prozac. I decline, saying that I want to see how far I can get on my own before I go jumping into meds. I’m stubborn like that. The OB I hated came by to tell me we were doing a great job and everything would be okay. I wanted to believe him.

Later that day, my mother picks me up. We pick up Allison and head home. I collapse. We manage to get a rental breast pump delivered that night (oh sweet relief as my milk has finally started to come in). I double pump in front of my mother using a t-shirt as cover. Eventually I give up on trying to hide the pumps.

That Friday I went to Atlanta to see her in the NICU. I’m heartbroken. I don’t want to be there. We’re not supposed to be there. What do I know about NICU babies? Why am I mother to one? Who the hell approved this script change? I didn’t.

Over the next few days, Chris and I spend some time together at his Uncle’s house as we ferry back and forth to the hospital. We talk about having another baby (see how far gone I was!) and I quietly wish we could leave her a the hospital but don’t tell him this for a couple of weeks.

That first week the feeding team wants to get Charlotte up to speed but she’s not cooperating. So the Plastic Surgeon suggests a jaw distraction which gets the feeding team pissed and puts us in the middle. We go to the garden at the hospital and I cry on Chris’ shoulder.

We decide to go with the surgery. At 9 days, she’s prepped and we leave her for surgery downstairs. I cry – again. His parents are there. I don’t want them to be but he needs support and I’ve chosen to respect that. I get the Mp3 player and disappear into the sleep room. I’m safe there. Very safe and lost in Linkin Park.

She comes back up in a medically induced coma. A machine breathes for her, she’s swollen, shiny, and tiny. But she’s had a good surgery. She made it through.

That afternoon, my husband calls the OB for me. I’m not doing well. We make an appointment for the next day. I made it 9 days, I tell them. I need something. I need help. I want to function because right now, right now I am not.

Right now, I’m brushing my hair, changing my pads, washing my hands, washing my pump parts, and it’s all very routine and necessary but it’s also very comforting. Very very comforting. I use the same bathrooms at the hospital. I use the same sinks at the NICU. I don’t stray outside my comfort zone. I kept to this routine the entire time she was in the hospital. I got edgy if it changed. At all.

Beginning of April I sprain my ankle as I get up from pumping. It’s the day we’re supposed to learn how to place an NG tube so we don’t have to have more surgery for a G-tube. I wrap up my ankle, bag up the ibuprofen and tylenol and go. There’s a grown up hospital across the street if it gets bad, I tell my husband.

I can’t place the NG tube. I officially suck, I tell myself. I suck. She’s angry at me because I suck. I can’t take care of my daughter. What the hell kind of mother am I? She’s my daughter. I should be able to do whatever I need to care for her. But I can’t. And so I have failed. Again.

We decide to go with a g-tube. It’ll be easier for me. I feel guilty for making her go through a surgery because it’ll be easier for me but easier for me means better for her. So that makes it okay, right? Right?

Right.

At 21 days old, she comes home. The ride home we can’t figure out how to get her pump to work. That night we can’t get it to work. I stay up with her because I can sleep the next day. Chris has to go to work. I don’t sleep well. I pump, I feed, I care for our 23 month old daughter and two dogs. A vicious cycle has begun.

Within two weeks, I ask for my meds to be upped. They’re not working. I’m stressed. My thoughts are getting more and more intense. They need to stop. The meds will make them stop. Make them stop. MAKE them stop.

Within three weeks, the thoughts are firing so rapidly at me I wonder if I’m in front of a death squad. I’m disgusted and repulsed. Pillows, visions of death, horrible deep dark secrets slam into me every few minutes. They’re like contractions on speed, really, waves that don’t ever seem to stop.

Within a little over four weeks, I’ve broken down. Irretrievably.

 

Follow me to Part IV

Happy Survivor Day to me!

Today, four years ago, at 2:20pm, I gave birth to a beautiful little girl.

She was three and a half weeks early after 42 hours of labor and not quite complete.

Her palate it seemed had not quite made the journey.

But she was eager to join us and had lessons to teach.

Oh, the lessons she had to teach were difficult to learn. But beyond priceless.

Lessons in love, patience, joy, understanding, beauty, laughter, faith, discipline, coping, and discovery of strength we did not know we possessed.

FOUR years ago today my trip down a spiral staircase began at a rapid pace.

But here I sit, four years later, the mother of three beautiful children.

I laugh, I cry, I parent.

But I am here. And here I sit as I sigh and smile, grateful deep down for all the time we have had and the time to come.

The mother of a child who, four years ago, needed a feeding tube to grow. Who needed round the clock care for the first month of her life.

The mother of a child who needed 6 surgeries in the first 5 months of her life.

And now – now she laughs. She talks. She eats without help. Without fear. Without a feeding tube.

She can say “Bobby” and blow up balloons.

Bubbles? Not a problem for this princess anymore!

She can say her ABC’s and sing a tune.

A good book is often found clutched in her sticky hands.

She.is.HEALTHY.

And I am happy.

I can understand 85% of everything she says to me. (Less than a year ago I couldn’t understand 50% of what she was saying)

She hugs. She loves to be tickled.

She can tell a very funny (and original) joke.

She is absolutely uncompromising on more occasions than I care to admit but I still love her with all my heart.

She says “I Love You, Mommy and I mean it!” which melts my heart more and more every time.

Four years later.

We’re closer than ever.

Happy Birthday to her.

Happy Survivor’s Day to Me.

The Power of the anniversary

"A Floating Red Balloon" by jcarlosn @ flickr.com

Put the past behind you.

Move forward.

Be happy about how far you have come since (fill in the blank).

These are all common phrases people love to shoot off when they know someone is struggling to deal with something which happened in the past. While they are certainly lovely sentiments, the one thing people who give voice to these phrases do not know is that memory is very organic. Sure you can do your best to decide to deal with a tragic event in a positive way but then there are the memories which sneak up on us and scare us to death. The anniversary of the birth of my daughters and the anniversary of my time in a mental ward for Postpartum OCD are a few memories which did just that to me.

I am not alone in this experience.

Many women struggle when reaching their child’s first birthday, their hospitalization date, miscarriage date, or the date on which they lost a child. These are all events that leave more than a glancing blow. The fight to return to the “new normal” is an uphill battle. And once the “new normal” arrives and you’ve unpacked the last box, there’s a looming date trouncing your way ever so cheerfully. Sure you can bob and weave but even the best of us may find ourselves down for the count after a few sucker punches.

A fellow PPD warrior mom, Helen Crawford, shared with me that her 1yr anniversary was very traumatic. She could smell/hear the memories of the year before. “My fingers burned. I talked with my therapist. Surviving severe depression is like surviving extreme trauma. I took the finger burning as a reminder to ‘love myself more’ and say thank you to my body.”

Today my three year old daughter found pictures of herself as an infant. Awwwwww, you say. But these particular pictures included a feeding tube taped ever so gingerly to her less than 24 hour old cheek with cute teddy bear gauze tape. Classic symptoms consumed me – heart in throat, check, rapid shallow breathing, check, rapid pulse, check, dizzy, check. Oh.CRAP. She’s been flashing them here and there for the past week and I’ve been ever so nicely sidestepping the issue. But today, today she wanted to know WHAT that was on her cheek and why it was there. Oh boy. And I thought the hard question with kids was supposed to be “Mommy? Where do Babies come from?” (And for the record, I GOT that one today too from her 5 year old sister – what a day!)

Suddenly, there I was again. Curled up in the hospital bed, crying my heart out, aching, hurting, wanting to go back in time to BEFORE the birth, for someone to warn us about the rabbit hole into which we were about to trip. What.the.hell???

She knows about her cleft palate and knows doctors fixed it. She also knows which belly button came from mommy and which one belongs to the doctors. But we have never discussed the tubes. NEVER. As playfully as I could, I explained to her that because her mouth had a hole in it when she was born, she had to eat with a tube which went in through her mouth and went allllll the way down to her stomach. (I can still hear her laughing because I tickled her as I told her this.) Inside, I was dying. I smelled the NICU. I heard the sounds, the crying, saw the tense faces, the reserved mouths as they asked about worst case scenarios. I thought I was going to pass out when she said she wanted these pictures – the tube pictures – up on her bedroom wall. I softly replied that Mommy would have to think about it.

I thought about it all day. ALL day. Once she got home from her 2 hours of special needs pre-k for her speech, we talked. Honestly and age-appropriately. I told her that when she was born while I was very happy to meet her and get to know her, all of the medical stuff surrounding her birth like the tube feedings and surgeries were very difficult for Mommy to handle. And that it was very hard for Mommy to look at pictures of her with tubes and such attached to her. I promised her we would find some different baby pictures to put up on her wall. I also told her that it was ok she had to use a tube – and I was glad the nurses and doctors knew just what to do to help her grow strong so she could become the amazing silly little girl she is today. She was sad but seemed to take it in stride.

To top things off, 12 years ago today, my maternal grandfather passed away suddenly after experiencing congestive heart failure. Yay for anniversaries, right? (And in 19 days, I’ll be marking the anniversary of my paternal grandfather’s death which left me grandparentless. I was a real ball of joy 12 years ago, I tell you what!)

Grief is a tough thing to handle. 12 years ago I dealt with it in a very physical and raw manner. I remember crying, screaming, and punching my then boyfriend until I would literally black out. Healthy, right?

The thing is to give yourself PERMISSION to mourn/remember/accept whatever it is that your anniversary centers around. Celebrate how far you’ve come since said event. Honor the event but also do something to help propel yourself forward. One of the last things my maternal step grandmother said to me (in what I now know was her I know I’m dying soon so I better get this out while I can speech) was to always be the best that I could be no matter what stood in my way. Those words have stuck by me. And even in failure, I’ve always strived to do every single thing that I possibly could before giving up. It’s part of what got me through my PPD. I knew I was better than PPD. I KNEW I had to turn and fight. And every time I have an opportunity to help another mom through her struggles, I am celebrating my anniversary. I am celebrating no longer being alone. I am paying forward the help I received. I am choosing to walk the line between remembering the past yet striving for the future. I AM HERE to do that. And for that, I am grateful.

Remember to celebrate YOU on your child’s birthday too. It’s not just your child’s birthday – it’s YOUR own personal Mother’s Day. Don’t rush around for the kid without stopping to breathe for yourself too. Sure, Hallmark doesn’t make a card for this but that makes it all the more special, right? You’ve earned it. You’re worth it. And doggonnit, we like you. In addition, the more positives you make out of a negative, the less power it holds over you. Darkness cannot win when bathed in light. Choose to regain those reins as you approach your anniversary – whether it’s childbirth, miscarriage, hospitalization, recovery – it’s ok to cry. But it’s totally awesome to party too.

My Premature Gift

Today, November 17th, is National Premature Birth Awareness Day.

Hello, my name is Lauren. I am the mother of a prematurely born child.

(Hello, Lauren – that’s your line. C’mon – all together now. Hello, Lauren!)

Our second daughter was born three and a half weeks early after 42 grueling hours of labor. I was not on medication during my pregnancy with her. 30 minutes after birth, the lactation consultant discovered she had a cleft palate. Within 24 hours, she was an hour away at a Children’s Hospital in the NICU while I recovered for another 48. Within 9 days, she had her first major surgery. Within 21 days, she had undergone two more surgical procedures. The first five months of her life saw a grand total of six surgeries. Since then she’s had two more. Our daughter will be four in March and has already had eight surgical procedures.

She drank from a special bottle when she was not being tube fed. I pumped exclusively for seven grueling months stopping only because my mental health depended on me making a very difficult decision. While she does not struggle with basic needs as much as she did, it still takes her longer than usual to chew because her bite is lopsided. You see, her teeth only meet when she grits them together at one pivotal side – the right side. Her speech is garbled. I can only understand 50 – 75% of my own daughter’s speech. (Ok, cue the tears) Do you hear what I am saying? Out of everything my daughter excitedly tries to share with me, I miss up to half of it most of the time.

This past spring she had additional surgery to fix her pharyngeal flap. This flap closes off the airway between her nose and throat. Speech ordered the surgery to help with her nasal emissions. It’s helped some but it’s still an uphill battle given her poorly aligned jaw and all the air it allows through when she attempts certain sounds. And she’s trained her vocal chords to compensate for the lack of a pharyngeal flap. But you know what? She can say “s” now. Perfectly. I can tell it apart from an “F.” And she can blow up a balloon, blow bubbles, and clearly say “Please Push me mommy!” Most importantly, she can now clearly tell me I am STILL her best friend.

While in the NICU she underwent genetic testing to locate a potential cause or additional factors for her isolated bilateral complete soft and hard palate (that means there was NO palate up there on either side, hard or soft. Hard is when you put your tongue straight up. Soft is when you slide it back towards your throat.) But there was no additional genetic reason. She was diagnosed with isolated Pierre Robin Sequence. This more often than not occurs in boys, not girls. We hit the jackpot.

Despite all of her hardships, all of her struggles, all of the things she will face as she grows and has to overcome new challenges and issues, Charlotte is one of the happiest people I have ever met. Her goal in life? To make us smile and laugh. All the time. For real (to steal a phrase from her).

I went through hell with her. Emotionally, physically, every kind of -ally you can think of. I was there. Gripped on for dear life. Looking back, I know I was depressed during my pregnancy with her. Weighed down with an unresolved postpartum depression from my first pregnancy. Cleft defects often happen within the first 6-8 weeks of pregnancy. Before I even knew I was pregnant our angel was already awaiting us with a huge surprise all her own.

Where am I going with all of this?

I’m filling you in on how hard it is to be a NICU parent of a premature baby. What kind of challenges we face. How it doesn’t all end when we step out of the sterile nursery where our children spent their first days, months, or possibly year. We worry when things come up – anything – about it being related to something that happened at birth – is this because of such and such? She’s got a cold. How will this affect her airway? Should I let her sleep on her back if she’s so congested? What if she stops breathing? And so the monster is fed.

But on the flip side I am truly amazed at how often I manage to deny the monster his food. How often I am able to keep a cool head and maneuver my way around the big issues. I remember time B.C. (Before Charlotte). I would watch shows filled with parents of special needs kids. Amazed I would wonder where on earth they found the emotional stamina to wake up in the morning and face another day knowing the challenges that lay in store. But they did and I do. I look forward to her giggles. I look forward to her playful eyes, her hugs, her kisses, her tantrums, her excited babbling when her bus is about to arrive. And sometimes I want to cry. But mostly I want to rejoice. God has gifted me a perfect Angel and one day, in HIS time, I will understand her perfectly.