Tag Archives: cleft palate

Whatever Wednesday: Anatomy of a Laugh

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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

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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

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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.