Welcome to the Cleft Support blog. This blog was created as a resource and to provide support to parents with a child born with cleft lip and/or palate.

Sunday, October 14, 2012

Looking back and looking foward

Kaleb, my youngest son, is about 4 and 1/2 months old now.  Compared to when he was born, he seems so big.  Compared to Gavin, who is almost 4 and a 1/2 years old, he seems so small.  However, every time I look at Kaleb, I can't help but think that Gavin was his age when he had his very first surgery.  That's when Kaleb seems really small to me.  Looking back, I can't believe that Gavin was so, so small when his plastic surgeon first began repairing his bilateral cleft lip and palate.

I remember so many things about that first surgery; mostly being terrified.  Choosing a surgeon was a big deal.  It's an 18- to 20-year commitment.  It's a bigger commitment than buying a car, and it carries a lot more weight as this surgeon was going to be surgically repairing my child's face.  Not an appendix, or a broken bone, but his smile.  Rather than choosing certainty, we chose uncertainty.  Rather than choosing a surgeon who seemed to have a well-defined game plan, we chose the play-it-ear guy.  We went with our gut feeling, and looking at Gavin's beautiful face now, I know we instinctively made the right decision.

It doesn't mean that the play-it-by ear thing is easy.  In fact, it was, and still is, a challenge.  When the nurse took Gavin out of my arms and back to the operating room, I had no idea what exactly was going to happen, how long it was going to take, or what he was going to look like when he was done.  The surgeon had told us, "Well, I might do this.  But, if I get in there and I see this, I might do this instead."  Overwhelming uncertainty.  But, we trusted him, and I'm glad we did.

That trust came over time, though.  I remember thinking, after that very first surgery, which we knew was going to be one of four or five early surgeries, that we somehow messed up his face.  He somehow looked. . . worse.  But, we knew we had to be patient.  It all wasn't going to fixed at once.  It was going to be a long process, and we had to have faith in the process.

I remember crying as I sat down in the waiting room where we waited for over four hours.  The nurse called to update us once during that time.  The surgeon met with us and explained what he did as they were taking Gavin to recovery.  It was the longest 4 and 1/2 hours of my life.  What if he reacted poorly to anesthesia?  What if something went wrong?  When we were finally able to go back to recovery and see him, I wanted to sprint.

Through it all, Gavin was a trooper.  Sure he was a fussy and a little cranky, but mostly he was happy and resilient.  That's the thing about kids; they're resilient.

I look at Gavin now, and he's beautiful.  Of course, he's always been beautiful to me, but given where we started, I am in awe of how incredibly handsome he is.  I look at him now, how smart he is, how happy he is, how loving he is, and I am inspired by his strength, his resiliency, his courage, and most of all, his kind heart. 

Photo courtesy of Creative Elements Design Studio

And, every once in a while, just for a moment or two, my heart breaks a little to think that he will need to continue to be courageous and resilient and strong many, many times over the next 14 years. 

So much uncertainty lies ahead, but I have faith.  I have faith that we made the right choice when we chose our surgeon.  I have faith that my sweet little boy will be brave and tough.  I have faith that I can dig deep and put my fears and uncertainty and anxiety aside and support him when the surgeries start up again soon.  I have faith that it will all be ok.  More than ok.  It will be wonderful.

Monday, January 30, 2012

Monday, November 21, 2011

The Things They Forget to Tell You

Ever since my son, Gavin, was born and spent some time in the NICU, we have had excellent care by both the doctors and nurses who have worked with him (for the most part).  The medical professionals who we've spoken to have been informative, supportive, and encouraging.  However, I have still learned to ask a lot of questions.  A ton of questions, to be exact.  The doctors and nurses who work with our kids and perform procedures on them have been through the routine many, many times.  Sometimes, they forget to tell us things - not out of negligence or disinterest, but simply because they've been through it, and they know what to expect.  I, on the other hand, am never prepared because I've never done this before.

This never rang more true than when Gavin had his palate surgery at 1 year and 4 months old.  At that point, we had been through two other surgeries related to his cleft and procedure when he had to have ear tubes put it.  As always, we met with the doctor and nurse one week before his surgery to discuss what would be done, how long it would take, and what to expect.  We were told that Gavin could have nothing but liquids for six weeks while his palate healed.  After that, we could slowly start adding soft solids (applesauce and mashed potatoes) for the next two weeks and continue building up his meal selection from there.  Since he was much older than the average age that palate surgeries are performed we had already started feeding him regular solid foods, and we were told he would be upset about his new liquid diet.

So, when he immediately made the baby sign language sign for "eat" after his surgery we were prepared.  We were prepared not to eat in front of him (although this took a lot of strategy and cost my husband and I at least ten pounds a piece).  Before the surgery, I had brainstormed a list of liquid options that I could offer him: chocolate milk, milk shakes, smoothies, juice, etc.  So, if I made something and he didn't like it, I was prepared to offer him something else.

The palate surgery went well, the overnight stay at the hospital went as well as it could have, and we were released later the next afternoon after we got him to drink a little.  We knew he wouldn't be overly hungry right away (considering the pain meds he was on and the soreness in his mouth), but what we weren't prepared for was him refusing to drink anything at all.  We offered him a variety of drink choices, and he wanted none of it.  We tried giving him liquids through a syringe thinking that his mouth was still too sore for a cup.  But, he still wouldn't drink.

Since we were released on a Friday, and our follow-up appointment wasn't until Monday, we felt a little like we were on our own.  After almost an entire day of him not wanting to drink, we had to force him to drink something - anything.  It was either that or take him to the hospital so they could give him an IV and get some fluids into him.  I'll never forget laying him on the floor, pinning his arms down with my knees, and holding the top of his head so that we could squirt some chocolate milk into his mouth.  And we didn't have to do it just once.  Finally, by the time Sunday night rolled around, we were exhausted, but he was finally willing to drink a little bit for us once in awhile.  The entire time I worried:  I worried that I was traumatizing him; I worried that he would lose too much weight; I worried that he would become dehydrated; I worried that the lack of nutrition would affect his growth; I worried that he would wake up starving in the middle of the night and miserable.

On Monday, we went to our post-surgical appointment, and I told the nurse about how hard it was to get him to drink anything.  Her response: That's completely normal.  So, I spent the entire weekend stressed out and crying over something that was normal - to be expected.  But, no one ever told us this before or immediately following the surgery - so how were we supposed to know.  I don't blame the medical staff for not telling us - they probably forget simply because it was "completely normal."  They knew what to expect, but I didn't. 

Now I know to ask exactly what to expect following his surgeries - to ask a lot of questions and a lot more follow-up questions.  And, you'd better believe that I'll be paging the on-call doctor if I'm not sure.

Wednesday, September 7, 2011

How a Honey Bear Changed My Life

There are many everyday, run-of-the-mill things that we take for granted - things we can do with our bodies like running, walking, chewing, etc.  We've known how to do these things most of our lives, and we usually never give them a second thought.  One thing my son couldn't do when he was born was suck.  Oh, we was born with the sucking instinct - the natural human reflex - but his body couldn't do it.  Because of his bilateral cleft lip, he couldn't completely close his mouth to form a seal on breast or bottle.  Because of his bilateral cleft palate, he couldn't form suction or keep air in his mouth. 

He got by, though.  With the help of a special bottle (the Habermann - now known as the Medela Special Needs Feeder), he was able to eat.  The bottle had an extra long nipple that you filled with liquid (milk, juice, whatever).  Then, you squeezed the liquid into his mouth, and he swallowed.  Eventually, as he got older, he learned to put the nipple on either side of his mouth and use his gums to "bite" the liquid out.  Feeding him with the bottle always required the utmost concentration because you felt like you might gag or choke him if he got too much liquid in his mouth.

By 8 months, we had to start weening him off of the bottle due to an impending palate surgery.  The surgeon said he wouldn't be able to bottle feed for awhile, that we needed to use something with a shorter "flange," and to start him on a sippy cup.  We had to remove the "sippy" mechanisms that keep the cups from spilling (because he still couldn't suck as his lip had not been repaired), and we also had to slit the flanges (the part you drink out of) in order to allow the liquid to come out easier.  We also had to use the ones with a soft, plastic flange rather than a hard one.  Using the same "trick" he did with the bottle, Gavin was able to "bite" the liquid out of the sippy, and thus he was completely weened off of the bottle at 8.5 months. 

Fast forward to right before his 2nd birthday.  His palate was now completely closed, his lip was completely formed, and we didn't have any upcoming surgeries.  At this time, sippys were becoming old, and we were getting tired of constantly having to take a cup with us everywhere we went.  It was time he started to learn to drink out of a straw.  It seemed simple enough - we'll show him, and now that he has the proper anatomical parts, he'd get it right away.  Well, easier said than done,

I can honestly say it was one of the most frustrating things I've ever tried to teach someone to do (and, I'm a teacher, I've taught a lot of things).  How do you teach someone to suck when they've never been able to suck their entire life?  We tried everything we could think of: holding liquid in the straw with our thumb and then trying to get him to suck it out of the bottom, giving him a juice box and squeezing liquid slowly into his mouth, and demonstrating how to drink out of a straw over and over to him.  He just didn't get it.  He didn't understand how to suck.

Finally, at my wits end, I mentioned it to his speech therapist.  Gavin was monitored by a speech therapist until he was two.  Even though he never had speech problems, they monitored him just in case, and the therapist actually provided some great tips that would help any child - but more on that later.  So, like I said, I mentioned it to the speech therapist.  I told her I was exasperated because I couldn't get him to understand how to suck out of a straw.  It was hopeless.  After giving some suggestions - all of which I had already tried - she said, "You know.  There's this thing we sometimes use to help kids learn how to drink out of a straw.  I'll see if we have some, and I'll get it to you."

Okay, I thought.  I'll try anything.  So, days later, I get a package from her.  In it is this:

Yep, it's one of those bears that usually holds honey.  Except it's empty, and they've put a plastic straw of sorts in the hole on the top.  I looked at it in disbelief.  No way is this going to work.  This is no different than giving him a juice box, and that failed horribly.  In spite of my skepticism, I took it out of the package,  put some juice in it, and gave it to Gavin.  I showed him how to put the straw in his mouth, close his mouth around it, and then squeeze the bear's tummy to make the juice come out (as per the directions).  I kid you not, within 10 minutes he was drinking out of the straw without even squeezing the tummy.

I cannot begin to explain my joy.  I was literally in tears.  I remember calling his dad and saying, "He's drinking out of a straw.  I'm so happy right now I could cry."  And, I was.  I never realized how hard it would be for him to learn a simple action like sucking or drinking through a straw.  To this day, I have no idea why the bear worked.  I had spent weeks and weeks trying to get him to suck out of a straw, and all it took was 10 minutes with that damn bear.  From that day on, we said goodbye to sippy cups, and he was a professional straw-drinker in a matter of days.    And, a year-and-a-half later, we still have the bear. 

Thursday, August 11, 2011

Go to a Pediatric Dentist . . . Seriously

Around the age of three, children usually go to see the dentist for the first time.  I figured, no big deal.  He'll just go to my regular dentist, have his teeth cleaned, and all would be good.  Or not.  Actually, the cleaning went surprisingly well.  Gavin was a model patient.  He sat still, opened his mouth big like an alligator (or crocodile - can't remember which one we were pretending to be that day), and didn't cry, scream, or punch anyone in the face.  All seemed well, until the dentist mentioned that he had a cavity.  Ugh.

Now, the fact is, Gavin is going to have to have a lot of dental work in his life - braces, teeth implants, and he'll have to have his gumline built in places, so the last thing I want is for him to be in and out of the dentist all the time having cavities filled.  But, I figured that we would get this small cavity taken care of, then we'd really step up the dental hygiene, and that would be the end of our worries.  So, I scheduled to have the filling done with the same dentist - my dentist.  Before I left, I had asked the hygienist how they go about filling a cavity on a three-year-old.  Her response: We numb it.

A little alarm went off in my head.  You numb it?  That's it?  But I figured, hey, he did so well with the cleaning, maybe he'd surprise me with the filling.  Wrong

Needless to say, it did not go well.  He did fine with the numbing, but once the dentist started drilling, it was all over.  The dentist was unable to finish the cavity (due to Gavin's lack of cooperation), so he threw some sealant on his tooth and referred us to a pediatric dentist.  Now, getting into a pediatric dentist is apparently somewhat of a chore in this area - there is a supposed lack of pediatric dentists - so we had to be put on a few waiting lists while someone tried to squeeze us in. 

A few weeks later, we were able to get an appointment (which was apparently just a consultation, but I didn't know that at the time).  Once we got to the office, I realized that this is what I should have done from the start - taken Gavin to a pediatric dentist.


1.  They have a child-friendly waiting room.  As any parent knows, this can be a lifesaver at times.
2.  They have tv's on the ceilings so kids can watch cartoons or their favorite movie (they can even bring their own movie) while they're getting their teeth cleaned or getting a cavity filled.
3.  The dentist was very knowledable about Gavin's cleft.  She gave me good advice that I hadn't heard from anyone else - like the fact that I need to find a good orthodontist by the time he's 5.
4.  They took x-rays unlike my dentist.  This allowed them to find two smaller cavities that need to be monitored.
5.  They came up with a comprehensive plan for cavity prevention in the future that included more than brushing and flossing.
6.  They knew how to work with kids.  (My dentist was really lacking in this area).

Even if Gavin didn't have a cleft, I would still take him to a pediatric dentist.  The overall care for children was far superior than what we got at my general dentist.  So, when it's time to start taking your kids to get their teeth cleaned, get a referral to a pediatric dentist.  In my opinion, it's totally worth it.

Thursday, July 14, 2011

Think Before You Speak

Watch what you say about other people's children.  Check out my article on TheModeLife:


Tuesday, June 28, 2011

A Mother's Guilt

If you’re a mother, chances are you’ve felt your fair share of what I refer to as “Mommy Guilt” from time to time.  Society almost demands that we feel guilty.  We’re expected to work, have successful careers, and be productive members of society while at the same time being the ideal mother.  The unspoken standard is that you should be able to work a full-time job, come home (to your spotless and well-organized house), make a wonderful (and healthy) meal, play with your kids, read them bedtime stories, bake cupcakes for the class party, and wake up feeling and looking refreshed and rested in the morning.  When we’re unable to meet these ridiculous expectations, we feel Mommy Guilt.  If we forget to send a snack for our kid’s preschool party, we scold ourselves and vow to work harder and just generally be better at everything we do, even though we know it’s not always possible.

We’ve all felt that kind of guilt from one time or another, but the guilt I’m talking about is bigger and deeper than that.  This is the guilt that stems from the fact that my child was born with a birth defect, and somehow I’ve always felt that it was my fault.  My son was born with a bilateral (meaning both sides) cleft lip and palate.  This birth defect was not picked up on our 18-week utlrasound, so my husband and I were very shocked when Gavin was born.  My immediate reaction was, “Thank goodness he’s okay.”  This then stemmed into, “Okay, now we need a plan of action to get him the best care that we can find.”  And it finally resulted in, “What did I do to cause this.”  The fact that my child, my sweet infant boy who I already loved more than life itself, would be forced to deal with countless surgeries (the approximation is somewhere around 18 – 20), doctor’s visits, and speech therapy sessions was overwhelming, and all I could think was that, somehow, this was my fault.

Gavin shortly after birth

From that point on, I was on a mission.  Not only would I make sure that my son got the best care, had the best surgeons, and would see every specialist that he needed to see, but everything else in his life was going to be perfect, and I was going to be the perfect mom.  He would never lack anything: fun, toys, attention, love.  He would have it all, even if it killed me.  I would spend the rest of my life making sure he had everything he ever dreamed of in order to make up for all the pain and discomfort he would have to go through.  That was the extent of my guilt, but it actually got worse.  A lot worse.

Gavin after his first surgery

What I fondly refer to as “guilt gift buying” began with his very first surgery.  Here was my four-month-old son, getting ready to undergo a four-hour surgery, and I felt terrible.  He was such a happy baby, and I hated to think of the pain he was about to endure.  I was scared – scared as hell.  What if something went wrong?  What if he reacted poorly to the anesthesia?  What if something happened?  So, to make myself feel a little better, I bought him some new, elaborate toy.  There, that will make you happyA new toy. The good news is that Gavin did incredibly well with his first surgery; nothing went wrong, and he was back to his normal, happy self shortly after.  But, that didn’t make me feel any better because I knew we still had a long road ahead of us.

Gavin after his second surgery

Fast-forward to four surgeries later.  They were all trying, heart-breaking, nerve-racking, and exhausting.  But, we survived.  Somehow, we survived.  The guilt, however, never went away.  I tried to do everything and be everything for my son.  I made homemade lunches for him every night.  I refused to send a peanut butter and jelly sandwich, opting to send things like stir-fry instead.  I made sure that he was read to every night.  I made elaborate birthday cakes that took me hours and hours to decorate.  I bought him everything his little heart ever desired.  And, I worked.  I worked and I worked and I worked.  I worked to make more and more money so I could buy him more and more things and take him on countless adventures – all to make up for my guilt.  I worked so much, and focused so much on making money, keeping my house clean, cooking the perfect dinner, that I became someone I didn’t even like.  I barely got to spend time with my family, I was crying over things like over-cooking a slab of prime rib or forgetting valentines for his daycare, and I was stressed to the point where it was starting to affect my health.  To add to that, I wasn’t enjoying life, and I definitely was not a pleasure to be around.

Gavin at age 2

It was at this point that life gave me a much needed wake-up call.  Something personal happened that made me stop in my tracks.  I asked myself, “Is this really the person I am?  Is this the person I want to be?  Is this the life that I want for myself?  Is this the role model I want to be for my son?”  The overwhelming answer to all of those questions was “NO!”  After a few months of some very intense self-reflection and self-evaluation, a few things occurred to me:

1.  Maybe there was something I did or didn’t do during my pregnancy that led to Gavin’s cleft, but I did the best I could.  How could I have known?

2.  What happened, happened.  I cannot go back in time and “fix” this, and no amount of gifts or cupcakes is going to change what happened.

3.  Despite all he’s had to go through, my kid is happy.  He’s a happy, outgoing, well-adjusted child.  He’s handled all of this far better than I have.  So, if he’s happy, I should be able to let go of some of that guilt.

4.  The person I became was not the person I wanted to be, and I was not the mom I wanted to be.  Did I really want my child to grow up thinking that nothing’s worth doing if it’s not perfect, or that if he isn’t perfect people won’t love him?

5.  I should have accepted the counseling that was offered to me after he was born.  I shouldn’t have tried to tell myself that I could handle this surprising news all by myself.  I’m now finally able to start working through all of the guilt I’ve harbored for well over three years.

6.  Life doesn’t always give us what we want, but it always gives us what we need.  Despite all that he will have to endure, I was given Gavin (and he was the born the way he was) because the challenge of the birth defect will make us both better people.  And, I needed that.

7.  I’m not perfect.  Perfect is an unattainable goal.  But, people will still love me even if I’m not perfect.  I’m doing the best that I can, and that’s all anyone can ever really do.

So, the next time you’re overcome with Mommy Guilt, take a few deep breaths, remind yourself that you’re doing the best you can, and we’re all in this together.

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