Tag Archives: cleft palate

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.

 

Follow me to Part IV

Happy Survivor Day to me!

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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

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"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

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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.